Behcet's Syndrome Society
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Anyone been diagnosed with Neuro Bechet’s?

I finally got into a neurologist. I explained my pain and showed him pictures of the outbreaks I’ve been having. He has requested a MRA (there’s 2 different ones) he also referred me to a rheumatologist in the same clinic to help with the diagnosis and treatments. He’s pretty sure it’s Neuro-Bechet’s (he says it’s even rarer than Bechet’) and it’s attacking my central nervous system.

Wondering if someone suffers from this and if you have information you could share.

I have googled it and found some information but it all seems so outdated (1999-2010) .

I am reaching out for help with treatments and to see how fast you responded and felt better. I have been out of work since 11-14-17 and am worried I may lose my job over this.

It’s a helpless feeling when you can’t even wash/ blow dry or comb your hair without pain and when you have facial and eye neuropathy pain and Daily throbbing headaches you just want answers

Thank you all for responding to my other posts I really do appreciate it I have endured this pain for 28 years we’ve thought it was recurring shingles all this time, so having a really diagnosis will be a blessing even if it’s a curse autoimmune disease..

I just keep holding on to this I heard it on the radio it is what HOPE stands for:

H- HOLD

O- ON

P- PAIN

E- ENDS

Thank you 🙏🏻 😊

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oldestnewest

I don't know whether you have seen this on the BSS web site, but it is our general Medical Fact Sheet No 16 on Nuero Behcet's.

behcets.org.uk/wp-content/u...

Within, it refers to this research paper: Journal of Neurology (2014) volume 261 Sept 2014, with the comment that "it might be useful if you mention this article to your treating clinician" (though I suspect they will know about it already). Here is a link to the US NCBI website: ncbi.nlm.nih.gov/pmc/articl...

It would useful on your login page to list in which country you reside, then individual comments can be best tailored to your needs. Hope this is of some immediate help. T

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Thank you for responding TonyWT..

I really appreciate it and everyone on this forum have been so kind and helpful!

Do you suffer with BD?

I live in the United States. Close to Seattle.

Since the doctors where I live have recommended me to go up north so I am now being treated at the PolyClinic.

Is there a link to join the Bechet’s Syndrome Society to gather more information??

Thank you again I updated my profile so it may help finding more information and people closer to me!

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Have a look under an earlier post on 23 Feb "Behcet's resources for new members" by Joanne Zeis. It has lots of links including to our BSS site behcets.org.uk. Joanne knows a lot of contacts and info about Behcet's within the US (and indeed elsewhere). I don't have BD but one of my relations does. T

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I was diagnosed with this but I think they might be wrong

ng. I've had 2 flare ups since 2016, not working since either.

I'm quite private so would prefer a direct message if it's possible on here.

Thanks

Sarah

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I’m sorry Sarah,

I’m new to this forum and not sure if it’s possible to private message on here. I understand the being private about this but what I have found is that there’s not one person on here that hasn’t made me feel comfortable sharing. They have all been so empathetic and kind. Especially since they all have this horrible and painful symptoms that come with this disease. When you are dealing with this and having doctors or people in general treat you like your bat shit crazy or seeking for pain pills . (At least that’s how I have been feeling) it’s nice to have people be so compassionate, empathetic and help you find answers.

I will share on here as I find things out because honestly I feel like I’m going through this so I can help others, the Lord knows I will be an open book about it’ and that I will seek answers and try to help people find the answers they have been looking for.

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Thanks, bat sh1t crazy is right! What I want to know is: is there a cure?

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Hi Sarah sorry no cure it’s a case of how best you can manage it x

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From what I read NO CURE, but treatable and manageable. With the right medication and lifestyle changes. It can go into remission and flare ups minimal.

I’ve been suffering for 28years so I’m actually thankful I’ll have a diagnosis and that I will be able to know what it is and learn.

It’s hard Sarah but if we all share and help each other then that will keep you feeling like your not crazy!

WE ALL ARE NOT CRAZY! I can tell you precisely where I hurt I can describe it to a perfect T.

Have you or do you do yoga?

I love yin yoga and also chakra series .I also do Thai yoga massage.

Try it..

Where do you live?

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I'm in Putney UK, but moving soon. I tried Yoga for a bit. I can't do it now, I just relapsed and in recovery mode. Let me know where you do Yoga

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Sarah,

I live in the United States 🇺🇸 !

Have you tried doing the other things I wrote about??

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I'll try some more Yoga

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Try Yin Yoga it’s mostly floor stretching. You hold the poses longer and it is supposed to help get you in a deep stretch. It’s my favorite type of yoga that I saw and felt the difference.. Good luck!☺️

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Hello there

Yes, I was diagnosed with Neuro BD six years ago following the usual delayed diagnosis.

At the time I was absolutely terrified as the CNS symptoms were bad and I felt it would seem to strangers that I looked like I was drunk, as I struggled with mobility at that time, couldn’t seem to concentrate or keep cohesive conversation and had the memory loss and/or brain fog that is so common.

I genuinely thought I was going to have to leave my profession and was worried about my ability to care for two young children.

I was put on Azathioprine which has changed my life and controlled my symptoms.

I felt very robbed and cheated with the diagnosis, but my life has got considerably better and most people have no idea I have this illness. The CFS coupled with the brain fog are the main “neuro” issues which certainly flareup when I’m overdoing it.

I wish you the very best. Please don’t lose hope.

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Thank for responding and telling me about how you are dealing with this. I really appreciate it! It’s a scary thing to hear when you first get it and to hear/read the things you could deal with if it is goes uncontrolled is even scary.

I have some confusion and feel like I have to really think before I speak, but thought it was the medicine lyrica. But to know it’s a double whammy with the neuro and meds that makes more sense.

I sometimes feel like my equilibrium is off and when I try to lay down I will feel the room spinning like I’m drunk. So this all now makes sense.

Thank you for sharing!

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Hey there- 29 F MD here. My doctor didnt officially diagnose me with Neuro BD, as she "honestly wasnt sure." I used to get aseptic Meningitis A LOT. Twice a year, every year, and during flares- a lot- up until about 25 with my last flare. Before being diagnosed, we chalked it up to- "i have a weird body" *shoulder shrug* But everyone else i have talked to- no one mentions meningits. Being that its a CNS thing- i assume its gotta be neuro aspect. (WE WIN THE PRIZE)

To answer/question off the bat- did you apply for FMLA? That's a real thing and lets you keep your position while being out.

As for neuro things- the pain is real. I contemplated suicide my last flare (sorry to be so grim, but just being honest) because it was never ending for about 3 months. Felt like sledgehammers on every inch of my skin. I could barely walk. Head felt like it weighed a ton, neck was brittle and couldnt move. I felt like stressed glass. It was the worst I'd ever had- My first time at 18 being pretty bad too (i was in the hospital for a few weeks) but this was seemingly unbearable. I had made a mantra like you, "this wont last forever" along with "THIS IS TEMPORARY." It wont. There is a light, I saw mine when I changed my diet.

I also had thrush at the time. All the antifungal medicines stopped working, (mind you I was not on any pain meds-fuck me) When i went full blown candida diet, on day ten- i felt a difference. A good difference. I essentially went into a ketogenic state. Incredibly anti inflammatory- this move alone started my 2 year recovery.

Here i am, 5 years later, a completely different and healthy and happy person. You too can be here- something so LITTLE, so easy- I push it on everyone. If only I had known earlier- change your fucking diet.

Cut processed food, and carbs like bread and pasta. (cut potatoes and rice for the time being, i added them back in, in very little amounts later along with low sugar fruit) eat MEAT. FATS. VEGGIES. drink only water. the change is real. the first week or so- super sucks butt. i mean, the fatigue and aches are real. then you wake up with energy. the ulcers go, the pain GOES.

ive been tinkering with a low carb/keto diet now for over 2 years. best thing IVE EVER DONE. im healthier than my normal friends. im on IG @bitterbiologist for meal ideas. DM for anything- ive posted all over here about my other experiences and meal ideas too. to add to my anti inflammatory experience, i fast until 12-1. theneat a turkey wrap (low carb wrap) with some sort of veggie. then dinner around 7. i posted some ideas below, as i had NO idea what to eat in the beginning.

food as medicine- WHO KNEW? i went from 15 medicines. to half dose of colcrys. no more nsaids, no more anitbiotics, no more antifungals. im not shitting you- the diet is what did it.

You got this girl, there is light at the end of the tunnel! xoxo

off the bat ideas for you-

salmon and brocolli, use rosemary and garlic on salmon.

roasted chicken and green beans and bacon(rosemary and thyme)

shrimp with lemon and spinach, parmesan (parsley and garlic)

steak and asparagus, with a garlic rosemary aioli

cheeseburger, no bun, all the fixings. salad with full fat dressing.

all of the above can be ready in ONE pan, in under 30 mins. use herbs. theyre the best.

xoxo

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Thanks for sharing I often have a stiff neck and was thinking it was job related but my atlas (neck) was out and locked 9 degrees and it seems to not stay in.

Whenever I saw my Massage therapist she would say I was so tight in my neck and same with my Thai yoga instructor.

So this is all making sense.

Do you have achey legs (in the IT BAND area) thighs and hamstrings tight?

I appreciate you response so much!

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I still get a stiff neck very easily. It’s like i never regained 100% mobility. My shoulders remain very tight and I’m so fortunate to have a boyfriend who rubs me almost daily. I don’t need much a few mins at most. Stretching is hilarious. I did hot yoga for a season and it helped a lot but when I stopped it’s like I stiffened back up.

If I don’t work out, I stiff up. If I walk too long, I stiff up.

I have the tightest hamstrings. No aches. Just super tight neck and hammies. Sometimes when I hug people it puts a weird pressure on it? Lol I try not to say too much to others bc my body is just that weird all the time.

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Doesn’t sound weird to me! Sounds like I’m talking to myself lol

I was exercising and doing yoga and it was going great. Then this hit me and knocked me on my butt!! 😩

I have the neuropathy so bad that it makes it difficult to wash my hair,comb or blow dry. I usually use a Clarisonic for my face and I can’t do that. Just rubbing my face hurts. 😏

I just want to get diagnosed so I can get back and figure out my new normal! I’m a very strong willed person and have had a lot of things I’ve had to deal with so I will Just take this as a challenge and beat it!!

Thanks for being so kind and sharing!

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Good grief - you are bang on!!! The funny thing is these are these are the foods I choose to eat when I am feeling well - when I feel awful - it seems only carbs will do - and it is the wrong thing to do. Will try harder. Thanks.

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You crave carbs bc your body knows it’s quick energy. If I sleep really bad or start to flare, I want stuffing and soda. I want all the bread. Instead I sit my whiny low energy ass down and eat my broccoli and salmon. Then I’ll get into a state of keto over a few days and be on the up and up dramatically.

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also in follow up to what i just posted, notice there is ZERO sugar. sugar is incredibly inflammatory. turns out i was intolerant to it, had no idea besides feeling fucking awful all the time. once you feel good, you wont go back. I promise.

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Rooser1

This is very interesting, my Arnp is Now practicing functional medicine. I have been changing over to this with her.

Few years ago I did a micronutrients blood test and some genetic testing.

I found out I don’t have the MTHFR mutation (https://draxe.com/mthfr-mutation/) but I do have one that I don’t process my B vitamins unless they are methycobalmin formal.

My first test showed I was deficient in calcium, l-asparagine, omega 3, l-carnintine and Low in B vitamins, Magnesium

My second one year later showed still deficient in calcium, inositol, l carnintine and now I’ve added alpha lipoid acid and SamE

My omega 3 were in normal range,

L asparagine was normal

I was feeling better. Then I got pneumonia and I couldn’t shake it I was

On a strong antibiotic for over 3 weeks

I got better and was pushing myself to start going to the gym and yoga.

Then I had this last flare 11-14-17 and have been down since. It comes and goes so this time we decided it’s not recurring shingles it’s something else and we’re not stopping until we find out.

.

So we did more testing. I have done a orgainic acid testing (OAT Test) (Great Plains lab) this shows how toxic your body is and what toxins you have. I was bad!

My gut was off, some bad bacteria & Candida. I had high levels of gasoline, ( I just pump gas once a week too)

Defiecient in GLUTATHIONE (this helps your body detox)

I take a big dose probiotic I use a b-12 spray (garden of life MyKind b-12)

I am high on oxyolates (so no berries, nuts or kale, spinach) if I have I must drink a calcium/magnesium citrate drink

Low levels in plastics and the other things.

So 1-2-18 I started a hard core detox,

I am now following Paleo and a autoimmune plan.

I am taking Biocidin

Doing the biocidin Lsf drops 2 drops 4 times a day and the GI DETOX take 2 pills 4 times a day. I drink only water. 80-100 Oz a day!

I am also doing all my supplements

I am Gluten Free, sugar free (that’s been hard I have cheated few times I love chocolate!) dairy free for most of time except cheese. I don’t drink milk I do love ice cream though. I watch the amounts of processed foods. Cheats are nacho tortilla chips, taco shells, potato chips.

Some seasoning for meat etc.

I have tried to limit rice and potatoes.

We love sweet potatoes though. I try to eat more salads with Brussels sprouts and cabbage, broccoli.

Sauerkraut (BUBBLES BRAND) it’s the only one I can eat.

I eat low amounts of fruit (micronutrients testing found out I am fructose sensitivite)

It’s been hard to folllow and I have to say there has been days I don’t eat much and a few days I cheated (my birthday, mom’s birthday & when we found what I could have) but the next day I get back on it and know that I need to keep detoxing.

This biocidin detox will last 3-6 months depending on when I retest the oat testing.

I also did a IGg blood testing for food allergies. I am waiting on my 23 & me health and ancestry results.

Most western doctors don’t want to understand these tests and what they can do for a person. It can get rid of a lot of illnesses. The are finding that If your gut is off it causes so many problems and inflammation is the big one too. Finding what inflammation is being caused and keeping that down.

I’ve got a long road ahead but I know that I have answers coming to my prayers.

I think I do need some western medicine in my system to calm things down until I get the rest fixed.

I am one of the luckier ones I don’t feel like if I have had Bechet’s these last 28 years, I have not suffered as much as some of the people on this forum.

I am suffering from headaches throbbing, I’ve pick jabbing . I can’t lay my head flat on a pillow, or lay on my left side. I have uveitis in my eyes (most predominantly in the left) I have 20% less blood flow and my vision is blurry at times and I have a hard time with reading 3&5 4&9 look the same. I feel like I’m straining to focus when I read.

I get electric shocks (zaps and zingers) neuropathy is the medical term. It goes through my left eye and thru the trigeminal nerve (cheekbone,nose,ears)

I’m cold to the bone.lower body temp for me (2 degrees lower than normal)

Lower blood pressure for me (100/75,113/70,115/83)

So that is why the neurologist is saying Neuro Bechet’s Cause of the headaches at the back of my head/skull. The neuropathy, shingles like rash, roof of mouth ulcer. I will see what the MRA shows and what testing the rheumatologist does.

Thank you all for your responses, I am overwhelmed by the kindness and empathy you all show!

Holding on to HOPE!

Hold on pain ends!!!

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i love that you had all these tests done- and the diet changes so far-keep cutting all processed foods and sugars, for me personally, it really is has to be kept out. if i eat some pastas or chips (esp chips) it wreaks havoc on my stomach and i get so sluggish and fatigued. if i eata bite of sugar, i get ulcers within hours. i kid you not.

i used to take Nexabiotic 23 strain, best one IMO, for the price and the strains. if you have the candida, thats a long process, and you have to be really strict with the diet (i did it for 9 months- my 2 fuck ups were sipping on a very small vodka with a splash of cranberry, along with a few drags of a cigarette bc i was just not having it those 2 times) (not a smoker like that either-used to have one with a drink)

candida really does so much more to the body and mind than people realize.

I eat a lot of omega 3 foods, between salmon and nuts etc. especially in a flare or if i feel one coming.

as for your gluthione- get on NAC, its available for cheap and from now foods. i supplement with this on a weekly basis. BEST SHIT EVER.

so weird about the candida and fructose sensitivity (mine is sucrose)- we sound too alike.

also the lowered body temp- ME TOO! i run about 96.6, i frequently joke that i am dead inside. I weight train and carry a fair amount of muscle, so it really boggles me how im so cold.

please keep us posted, and if you have anymore questions -post them!

XOXO

slow and steady wins the race!

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Omegas was the key for me but hard as I am anaphylaxis with shellfish (iodine) it was tough to find a fish oil I could take. I take Nordic Naturals, ultimate xtra omega and I take 4 of those so almost 6000 mg a day!

Where do you order the probiotics from?

My probiotic is like $67.00 for 2 months

The biocidin is super expensive but my doctor orders it for me and I get It a little cheaper.

Glutathione I order from JoMar Labs

Where do you get your things from?

Most of my vitamins are Thorne, Metagenics, Pure.

(brands that my doctor suggested)

I order off of a site called iherb.com

For some of my stuff you get money back in rewards so i use it for the next round. It’s expensive!!

Well more good news I’m getting the MRA of Brain and neck and MRI of brain this evening so I’ll have the results for my rheumatologist appt next week 3-8-18.. it’s all coming together, I just need a firm diagnosis so I can get back on short term disability and then my job will be secure and I won’t lose that and my medical benefits..

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i ordered everything off amazon.

probiotics are: nexabiotic 23 26$ for 60 pills

i also use acidophilus 2bil cfu by NOW foods.

NAC is from NOW foods too.

i had an mri of my brain done 2 years ago, i was so nervous with how shitty my memory was and long term effects, but am happy to report there are no lesions.

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Is it okay to have fish oil? They told me not to have anything too holistic or conflicting. But the fish oil supplement was expensive

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I don’t see why not. And honestly everyone is so different- only you can tell what feels right for your body. I don’t think it has to be some top of the line brand either. At least I wouldn’t buy it that fancy.

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My Arnp says yes there is a difference in vitamins. What added fillers they but in and the real amount of the essential ingredient you may need isn’t fully the amount you are getting.

I order from iherb.com

(You get money back on your orders in rewards so it helps keep cost down!)

I buy Nordic Naturals Ultimate omega and ultimate omega xtra.

I was tested and had zero omega 3 that was in April. I’m allergic (anaphylactic to shellfish) so we started out with plant based (hemp, chia flaxseed) I would grind them in a coffee grinder then sprinkle them on salad in my smoothies, oatmeal.

We restested in September and my levels were at a 4.

My Arnp Called Nordic Naturals and asked if I could take there products (they said No shellfish!!) so I started out slow and now I take 4 xtra which equals 5980mg of omega 3. I retested in December and I was at a 9. Now I’m normal levels.

I also only take Thorne research, pure, vitality,metagentics brand of vitamins.

Good luck, ask me if you have any questions!

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Bloody freezing too. In 2016 first episode in hospital (I've had 2 3 month stints). I was Vitamin D deficienct. Needed sunlight badly! I relapsed in Thailand late last year but they still kept me in freezing conditions in BBK. I think not to get fever. I was ever so grateful for occasionally walking/getting pushed in a wheelchair rather, for a 3 min warm air. Good luck!

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I don’t think I’m deficient as the only weird blood work I’ve ever had was a borderline hyperthyroidism once and it was from a really stressful job. Other than my urine containing blood and leukocytes one day and gone the next lololol. And the one time my alt and ast was 3-4x the normal limit. But my point is- I take 4000 units a day now to help with my lifting and well why not, I’m a woman- and I’m still running at 96.6. I can wear all the socks and shit in the world sometimes and still feel like a dead fish.

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Does your whole body ache especially in cold damp weather? I’m almost sore to just a soft light touch (makes me feel so whimpy!)

My ankle & wrists are stiff/sore.

My shoulders/neck are all stiff and tight (jacked up tight)

Wondering if this is common with Bechet’s?

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That sounds like me exactly but only when I’m flaring or just worn out now that I have a different way of life to compare it to. Oddly enough, I can say I feel great on rainy and cloudy days, but they have to be warm. My eyes are sensitive to light, so I love grey days. Not cold and shitty. But I also think that’s the general population. I can say from my past experience, I have felt like that for weeks on end. Weather related or not- because I remember feeling like death on a nice summer day. The same areas. Sheets felt like sledgehammers on my skin. Hugs- forget hugs. Death grips. Couldn’t hang clothes bc the motion hurt. And forget opening doors. I will say I still have very weak wrists and I’m working on strengthening them, but I find I still do my old coping movements/mechanisms to hold things or turn things sometimes(to take the strain off the wrist).

I also still have a really bad memory. I just don’t remember much from high school to mid 20’s. I don’t remember names mid conversation when I’ve known you for a while. I don’t remember how we’ve met. I don’t remember certain situations. People will tell me a story and I don’t get that “oh yeah....” moment. It’s like brand new to me. I used to get upset about it but I have a very supportive circle, so I remain honest, positive, and try to act with my best intentions so at least if I don’t remember what I did, I know my character. I write everything down on a weekly basis in a notepad and in my phone so there’s no pressure to struggle to remember. Including bills. I have my next 2 months of paychecks mapped out. That helps a lot.

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Rooser1

What’ medications are you on? Have you noticed any relief? If yes, How quick did they work? Side effects?

I know everyone reacts differently just curious though.

I’ve been off work since November and I’m close to losing my job I have been given 6 weeks to get back. I see a rheumatologist 3-8-18 and hoping she will get me started on medication. Frustrating but good news is the MRA’s/MRI came back normal limits so it makes Neuro Bechet’s less likely.the neurologist said I could have Bechet’s with neurological symptoms related to the Bechet’s. My large blood vessels are normal , even if The smaller blood vessels to the eye are impaired.

Im hoping you or someone else can suggest things I should ask, request certain tests at this coming up rheumatologist appt???

Rooser1 ~ Thank you for always being so kind and helpful!!☺️

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They started me on colcrys right away. The adjustment period was really tough. It’s 0.6 bid. It was horrible on my stomach. I couldn’t stop shitting. If food touched my lips, it was time to shit. My butthole was bleeding. Joanne Zeis told me to start at one pill a day. I did. Took me about 4 months to stop pooping all the time. Half dose seemed to manage my ulcers and inflammation enough, I’d still get ulcers and stiff but just not as bad as before so I kept it at half dose. When I do flare or get a bigger than normal ulcer- I “double up” for a few days. This move, along with extra sleep and antinflammatory foods, has helped me stave off genital ulcers three or four times now. 🙌 The other medicine that was really helpful was nabumetone- that helped my wrists SO MUCH. It helped a lot. No side effects. my insurance ran out about two months in, so I couldn’t refill it for a month. When I got back on it, I was really light sensitive and dizzy a lot. So I stopped taking it. I was sad. But supplemented with aleve. Took too much aleve per day (3 a day) that I started pissing out pieces of maroon tissue. I tossed it up to renal papillary necrosis. Two main causes are nsaids and vascular is- go figure haha. I also had wbc and blood in my urine from time to time (I have urine analysis strips). So I stopped aleve. So now I just eat salmon with rosemary and bed early when my joints hurt. Seems to do the trick.

As for questions and tests- they obviously should be running your sed rate and c reactive protein. These are inflammatory markers. Also the other autoimmune ones like ALA and sjogrens. I tested heterozygous for sjogrens. As my dr called it”once you’re autoimmuny, you’re sort of autoimmuny all around.” I retested negative later. I also had an mri done for brain lesions. It was fine, but this was a few years after- but still a Relief.

As for questions- I mean I guess ask what do you in a flare? Do they have same day appts, will they call in prescriptions without a visit? What’s their plan sort of deal? Having that information always calmed me down.

I also requested Ativan. I had gotten Valium at one point during my 18 dr bounce “I’ve never seen this before” diagnosis. My anxiety was still sky high and I was terrified of going into a huge flare again. I remember I got my first ulcer after it and I had a panic attack. I was like HERE WE GO AGAIN- So I started Ativan to calm that down bc obviously if I’m freaking the fuck out about getting sick, well, I will get sick. WHAT A FUN CYCLE. I don’t use it anymore, but it helped me tremendously for the first two years after diagnosis. So maybe see if they prescribe that? My rheum was hesitant and told me well, we don’t prescribe that. I was like well, my anxiety is making me flare, and the flares are keeping my anxiety soooo. We made a deal. I bring in the bottle once a year, and it usually has pills left. She gives me 90 .5 Ativan. The bottle is for a thirty day supply 1 pill tid with no refills. But again, I make it last the whole year. I take them when I feel weird downstairs or am having anxiety that I can’t pinpoint. You can’t check your vagina every five mins at work you know 😅

But over the years it’s been less and less so that’s the point.

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Weird thing or should I say.. LUCKY.

I don’t get gential or mouth uclers. Have had few outbreaks of mouth uclers (rough Of mouth down throat and be felt them on my chest) but nothing down under. 🤷‍♀️

Think that’s why I’ve been so hard to get a diagnosis. I have as much as 3-4 years between outbreaks too. 😏

So really if I do have it I have had lesser of the evil so to speak.

It’s the every day body aches, sporadic shingles looking rash.

Switching to gluten free was because I really noticed that My sinuses were stuffy and swollen. Dairy free was because my tummy was bloating.

Sometimes I was attributing this all to age, I was very active as child played sports (basketball, softball) car accident (rear ended @ 55mph and we were stopped) thought it was just those things catching up to me. 😏😩

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I had a crazy flare at 17 with genital ulcers. Then the next horrible genital was at 25, so theres that many years for me. Then I had close calls down there almost every year since up until 1-2 years ago.

Mouth ulcers constantly from when I could remember. Just always thought it was from food.

I read an article about how emotional and physical trauma can trigger autoimmune responses. For me, mine started after my boyfriend of 2 years cheated on me with five girls. He was my first love so at 17- lol I took it pretty hard. Cue the meningitis and ulcers everywhere.

So I made it almost 10 years with not all the symptoms. I don’t have uveitis either. So if I went to the drs then, what would they see? Mouth ulcers? Okay andddd. 🤷🏽‍♀️ So just keep recording everything.

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I am so sorry you’ve suffered so badly. I’ve had my fair share of troubles with men😏.

Silly thing is I’ve had a lot more stress in my 20’s & 30’s than now. 🙄

I think my switch stuck🤔 and now I’m in the constant fight mode.

Well hope I get answers later this week so I can get over this constant flare and begin to get it calmed down and not so Angry! 😡

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Please keep us posted on results and any new symptoms. All ththe good vibes your way!

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Sounds like I’m reading about myself. Diet is the only thing I can use to control my symptoms. I came on here because I think my daughter has NB. I have other auto immune diseases including fibromyalgia ANK SPON and psoriatic arthritis, and

Sjogrens but I have symptoms of eye disease and being checked for uveitis and headaches for my whole life and nerve pain/ neuralgia etc and thyroid dysfunction. I use my diet to control my symptoms and am coping. I also take b12 daily and starflower oil magnesium and cranberry. I do Thai chi and yoga. These help but I’m still searching for answers. I have suspected NB and will mention to my rheumatologist at my next appt.

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Hi there. I suffer from Neuro Behcets. I have been suffering since I was 10 years old but diagnosed at the age of 34. I have tried EVERY possible medications, pills, injections, creams, canibis, you name it I've tried it. I absolutely agree that diet change helps your body feel a little better. However, for me anyway, diet change alone has no lasting effects. I still follow a strict Paleo diet. So nothing has worked to keep my symptoms and pain under control. I am going to start intravenous chemotherapy in April. I'm terrafied but hopeful. I completely understand your physical pain. It's unbearable at times....most of the time. I take many unwanted ER trips due to pain so bad that I feel like my head is going to explode or rip in two. It's awful. Most people (even with BD) don't understand this type of pain. I had to say goodbye to my career due to no relief and frequent reoccurring symptoms. It was one of the saddest days of my life. I have complicated Central nervous system issues as well. NBD has damaged my cognitive skills to the point that my 11 & 14 year old sons have to "watch" me because I feel so confused like a 5 year old child. There are some good days but they are far and few in between. Unfortunately my 14 year old son was diagnosed with BD 8 months ago. Doctor appointment scheduling, keeping track or lab and test dates is such a difficulty. When I have cognitive disfuntions staying organized and remembering anything is almost impossible. Thankfully my husband has set in place a scheduling and note taking system for us. It's helpful because my 14 year old can manage it all when I'm incapable. Its a lot of responsibilities for a 14 year old I know. I'm proud of him as he had to grow up and be responsible for things any other 14 year old would struggle with. We pull together as a family and keep trucking along. I pray that your neurologist and rheumatologist help get things under control for you. Keep in mind every patient is different. What works for me might not work for you and vice versa. I haven't found anyone with Neuro BD. I would love to stay in contact with you. Finding a good team of doctors, speaking up when you dont understand something your doctors say or does and staying strong is the only advice I can give. You never really know how strong you are until being strong is your only choice! My prayers go out to you.

♡Gina

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Gina,

I’m hoping I can get answers and as I do I will share in hopes it will help others.

I’m sorry you are suffering and I pray that we will all work together to help each other and the things I’m going through will help others.

I know that if my faith wasn’t strong that I would not be as strong as I am!

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On your brain scan, have you been diagnosed with Empty Sella? How does your pituitary look? Sometimes, scar tissue from Neuro-Behçet’s can form around your pituitary, which is what happened in my case. The nerves that control the eye muscles run right through the area that contains the pituitary, and if there is any pressure on those nerves, you will have trouble controlling your vision and, thus, you will get pain in and around your eyes. Behçet’s killed my pituitary with inflammation choking off the blood supply. Dave

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Wow Dave, thanks for the information, I just went in for the MRA of the neck and brain and MRI Of brain. So I will see what the results are. The neurologist I am seeing requested and saw the results from these scans not quite 3 & 1/2 years ago when I saw him for another outbreak on right side of my head that left me with ear pain, vertigo, Daily continueous headaches and migraines. So he will be able to see if there has been changes.

How long have you had this disease?

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I was only diagnosed in late-2013. My doctors think I have had this since childhood, but the disease process didn’t really start taking off until I was 27 (1997).

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It will be interesting for me to find out I’ve been dealing with this since I was 18years and I’m now 46 years.

Have you done the 23&me health and ancestry?

The health side is supposed to show your genetics, and if you have any mutations . I did it and am waiting for the results it would be interesting to see if we all had a genetic issue.

Thanks for sharing I do appreciate it

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Hi F2,

I noticed you are following me so I hope anything I have written or received so far has been helpful.

I am still waiting for a confirmed diagnosis as well, although my GP has said he will refer me to the CoE in Liverpool that was recommended to me.

Glad to see the amazing Tony of the BSS gave you some advice, they have great info and I am sure if there is a specific question you have they will have a document on it or you could send a question to Tony via this site and he will answer it if he can.

I completely understand the helpless feeling. I was diagnosed with Trigeminal Neuralgia in my face and neck at first , I have medication for it , but the neck and head pain usually comes with a flare up of mouth or eye symptoms and I , too , know what it is like to feel pain eating, or brushing your hair . I have just gone been diagnosed with uveitis , at the moment , I cannot do my art work, and the usual attempts to sort out getting better has made me flare up. At the moment , the throbbing , pins and needles and heat in my legs and joints is unbearable, it is at these times that you cannot give up H.O.P.E

I don't know about the effectiveness of BD meds at the moment because I am still not on them. I can give you some advice , keep an record of everything now , write down a full list of what you feel in quiet times and one of symptoms in flare up, write down estimate of time they last and how many a year, write a list of all the tests you have had, meds you have had , times in hospital and which illnesses you got negative results for. Print off one to give to every new doctor you see and keep a copy with you, just in case the brain fog descends you can look at it to remember where you were up to. Take a notebook and write down all they say, who they are and if you are to be referred to whom , so you can chase it up. With Neuro BD and eye related symptoms time is important.

Write a personal diary daily, keep an eye on food, with flares up in my whole body and head , I usual fall back on a sugar and gluten and fungal free diet , dairy free except for probiotic yoghurt and butter , I take garlic, turmeric and omega complex supplements during a meal, these seem to help with joint, leg and digestive issues. Diet is very much trial and error so you can try your own elimination exercise and cut out the things that caused symptoms.

I am light sensitive and have been for years , I wear sunglasses out, even in winter, but they also reduce the affect on wind on your face and eyes triggering stiffening in your neck and head. Wearing a hat in cold or wind is a must . Look for environmental factors that trigger pain and just take them into consideration when planning your day.

Try swimming and walking , I can't deal with rotations of yoga but do gentle circling exercises.

Keep in touch , either on posts or feel free to send me a personal chat if you want to talk

K

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Thank you so much for reaching out to me. I appreciate you sharing your story. I’m still in the diagnosing stage 🙄. But have developed more issues (Tummy ones) and the neurologist has diagnosed me with vasculitis and a flare in my cranial nerves and he found issues in my abdomen.

So he put me on Trileptal and that gave me relief. I’m seeing a gastro Dr now and scheduled for the upper/lower & capsule endoscopies next month.

Last week I had another cranial flare I did my blood work and my sed rate use to be 2 or 3 and this time was 28!

So when I saw the Retina specialist and she said my eye was ok and she even called my neurologist while I was there. The two of them told me to be patient it’s getting close for a diagnosis. My neurologist had me to the Trileptal until I find relief again.

I think my trigger this last time was over doing it, or maybe having my hair done 🤷🏼‍♀️🤦🏼‍♀️

I also lost my job! 😢

I am on a strict diet no dairy, gluten or sugar. Yes I have failed a few times but I get right back on it.

My primary doctor she practices functional medicine gave me the results of my 23&ME. I have issues in my genetic pathway which show issues with my detoxification pathway. So we are working on that. She’s got me on a lot of supplements.

I’m hanging in there knowing I’m getting closer and I have 4 wonderful doctors that are not going to give up until they get the diagnosis they all believe me. I’ll just need to find a new rheumatologist & dermatologists the ones I saw were useless, and didn’t believe me.

Thank you again for reaching out to me!

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Sorry for the delay in responding and I hope your symptoms are improving.

It sounds like you have been fortunate in finding a team of doctors who are willing to work closely together as soon as possible.

I am still waiting for my diagnostic appointment, with throbbing eyes , legs , head and joints at the moment, the fire within can take its toll.

I have found over the years that there is nothing that makes you feel more sick than trying to get well.

Doctors ask if you are suffering from stress but the worst stress that increases a flare up of your symptoms is actually having to deal with doctors, chasing up appointments and results or being knocked off consultants list because the day you went there wasn't a flare up in your condition so they class you as alright now and discharge you without looking at your history.

Crazy I know, but in some ways it was a relief to be diagnosed with uveitis last month because at least it proved something was going on.

I am sorry to hear about your job, someone did mention a way you could get help , but I realise that the stress and sadness that can cause can increase the problems.

Keep your mind strong with the smallest goals of the day, like yes I did some washing today and cooked a meal, or I had a brain fog free day, or I spent some quality time with others. It really does help. You will be on a good remedy soon and in remission ready to get back on the horse. You may find a job you would love that is easier to do with BD, a possibility you wouldn't have thought of before.

Optimism is the key to surviving long term illness and pain. Always look for the silver linings.

I will give you a giggle, I told my friends the other day that the upside of my blurred vision is that we are now all wrinkle free in my eyes!!

Please feel free to send a message to my chat board if you would like my email for ideas on food , benefits of fungal free and food advice , especially for times when you have digestive symptoms , I am happy to help.

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Blearyeyed,~

What a nice message to receive today from you.

Thank you for taking the time to respond to me I really appreciate. I am slowly figuring it out. It’s been difficult for me to get use to depending on others, I am use to doing things myself. Lately I’m feeling well as long as I don’t over do it and get my rest. I usually ache more on days when the weather is cold and wet. Sunny days or just no rain days are my best.

I have my scopes in a few weeks so I will have answers soon. It’s the waiting that gets tiresome.

I do know I have learned things through this illness and I’m sure it’s things that will benefit me in the end. 1)self love and taking care of your needs first. 2)It’s ok to say I’m tired and not do things when people ask. 3)Saying “No “is ok just because you don’t want to do what someone asked.

4)eating healthy foods tastes better

5) if you have a cheat meal it’s ok

Be Grateful and Thankful for the people I have in my life.

I know that I feel terrible but I have read others on this forum and I know others on here that suffer more.

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I wrote a reply a few weeks back to a member of very similar sentiments.

You certainly have the right approach.

It is really hard to let go of the reins, especially when we are used to coping alone, and most people with long illnesses , especially ones with no diagnosis, cope alone more than most , not wanting to bother family or friends with their illness . We all go through a sort of guilt for having to put people out but part of coping is learning not to be guilty about taking care of yourself.

The more you do , more you are willing to say no , the easier it is to manage your symptoms.

Let the little things go, rid yourself of stress you don't have to deal with, nap when you need to guilt free you will feel better for it than trying to stay awake because you feel you should , just have an alarm to off after a couple of hours.

Tell friends and family you are ill even if you don't look it, that you may not be able to take on as many commitments or jobs as you used to, you may not be able to go to as many things or might have to cancel at the last moment , even if it is important and you hope they will understand and support you until you are back on your feet. Real friends do understand and prefer to know why you have changed, the ones who don't you can do without.

Just breath, stress is your enemy , I realise that worrying doesn't help me solve my problems any quicker it just makes me feel worse when I'm doing it.

Exercise when you can , in small amounts, work out what foods suit you and enjoy quality time with those you love rather than worrying about the small stuff , the housework , or the petty squabbles around you.

Positivity and a patient smile takes time to grow but it is worth it , and always remember , you may find it hard to do the same things you did before but you are still the strong , confident , clever and funny person you always were

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My GP suspects Neuro-Behçet’s, but I have not yet found a competent neurologist who doesn’t just want to be on the gravy-train it easy diagnoses and a paycheck. (Sorry, I get cynical sometimes about finding the right doctor.) Does anyone have a neurologist who is competent in treating Neuro-Behçet’s? If not, a good neurologist for MS would be a good substitute. Thanks!! Dave

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Are you in the UK or elsewhere?

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Dave,

I’m in the USA, where do you live?

Also, since this post my neurologist did more scans and he has now diagnosed me vasculitis with a flare in my cranial nerves and abdomen. I have seen a gastro Dr and have scopes next month

( I still waiting for firm diagnosis of Bechet’s)

He’s put me on Trileptal for the horrible neuropathy I was having. That’s helped me a lot. Before I was on that I couldn’t even lay my head flat on a pillow or lay on my left side.

I’m so sorry you are having this issue now.

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Oh gosh, sorry you’ve been having Neuro symptoms. It hits all of us differently.

I am in Atlanta. My Behçet’s doctor is very good, as is my rheumatologist, but I have not been successful at finding a neurologist who is comfortable working with my complex issues. If you’ve been firmly diagnosed with vasculitis, I would recommend getting on some kind of immune-suppressing regimen to knock out the flares and suppress further ones.

My GP who is very knowledgeable and up to date on Behçet’s, is Gladstone Sellers, and my rheumatologist is Gary Myerson. It took a long time to get my insurance to cover my medications because there isn’t an established medical treatment regimen for BD. I also have psoriatic arthritis, which is treated with Humira, and I take Methotrexate as well. I feel better on the cocktail, but went through an infection that interrupted my treatment for about six weeks and caused my symptoms to come back with a vengeance. I’ve been back on the treatment for about a month and I am starting to feel better again.

Thanks for the tip about Trileptal. I take 3600mg of Gabapentin a day and it makes a difference, although the whole-body bone-crushing pain I have will still sometimes land me in bed writhing in pain at times.

BD killed my pituitary/hypothalamus system, rendering my endocrine system mostly inoperative without lots of pills and shots to replace the missing hormones. One hormone that I inject to control my kidney function, DDAVP/Desmopressin, has changed. I am only taking about 20% of what I was injecting when first diagnosed with Central Diabetes Insipidus, stemming from the dead pituitary. My endocrinologist said that sometimes the brain makes more cells to make vasopressin, even if the pituitary is destroyed. Neat how the body tries to compensate.

Just to be clear, the surgical biopsy of my pituitary showed that the inflammatory process that killed the system ultimately was all about the vasculitis choking off the blood supply to the pituitary. This is very scary because it also means that the blood vessels in my brain are having waves of the same inflammation and it scares me to think of what might lay ahead. The pituitary is attached to the bottom of the brain. The sooner you get on treatment, the better. Don’t let them keep poking at you with endless tests while you deteriorate. Push for aggressive action/treatment. Even if they don’t call it BD, you know it’s some kind of autoimmune/auto inflammatory disease, and treatment could essentially be the same.

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Dave,

I’m so sorry to hear about your struggles. I’m in Washington. I’m having a hard time finding a competent rheumatologist the one I say was useless but maybe after I’m firmly diagnosed I’ll get better results. My neurologist intends to send her a report letting her know she gave up to fast on me and that he kept looking and he found the problem. Guess that’s why he has been Seattle Top Doctor every year since 2014.

I want to clarify why they are not treating me yet.

My doctors are all on the same page, if they treat me before the gastrointestinal doctor does his endoscopies they are worried it may start to heal or mask the inflammation & vasculitis that was seen in the scan. Now it’s just waiting cause my gastro doctor is booked. I’m sure I could have gotten in to see some else but I have history with this one and so does my family. My older sister had Crohn’s (this doctor got it in remission for her). I just have until 6-13.. follow up on 6-20

Once he varies and gets biopsy and compares my scopes from last ones (14yrs ago) he will jump on it. He’s got a plan that he’s ready to roll out. He’s very knowledgeable and he’s seen this in the intestines before. Plus I need a firm diagnosis so I can appeal short term disability insurance. So If I can’t work again we can move towards long term disability benefits.

With it effecting my cranial nerves it’s hard to stay focused and I wouldn’t be able to do my line of work now. I’m hoping once I get on medication I will be able to.

Are you able to work?

Does your vasculitis cause you to ache to the bone?

Do your body ache to the touch?

If you walk long distance does your body, legs feel itchy?

These are symptoms I have and I curious if others do?

Have you ever looked into a functional medicine doctor?

I know some where in Georgia there is a DR JOCKERS.

I wonder if you would get some good advice from him I’ve had the best experience and finding & I’m working on fixing a lot of the root causes.

You could also go into

Www. Ifm.org to search for a doctor in your area. (IFM- Stands for *Institute functional medicine)

My Gp is a nurse practitioner and practices functional medicine so I get the best of both worlds.

I am gluten dairy and sugar free, I cheat on occasions but try not to.

My Gp has wanted to put me on something and same with neurologist and Retina specialist, but all feel we need to let the gastro Dr do his thing. I’ve been misdiagnosed for 28 years so what’s a few more weeks 🤣🙄🤷🏼‍♀️.

Thank you for sharing your story with me I appreciate it so much. Before I found this forum I felt so deflated and depressed but with all the wonderful people I met through here it’s really helped me change my way of thinking and learning I’m not alone nor crazy 😜. My family says I’m handling this so well for what I am dealing with and the pain I’m in. I’ve learned that I can say NO I’m not feeling well and rest that I don’t have to feel guilty that I can’t do things or push myself until I’m exhausted.

I learned That what I’ve felt and tried to explain is REAL AND NOW I’m gonna find doctors that believe me and listen to me and help me get back to being better!

Again thank you and I hope you figure your issues out soon

Have you check not even sure if this is close to you this neurologist out?

google.com/search?client=sa...

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Gosh, thank you for the information! I actually did go to the neurologist you looked up many years ago, and he is great. If he were in a safe area, I’d go back in a minute! Ah, the diet. The one thing I cannot seem to avoid is sugar. I’ve been better - sugar substitutes are coming into my diet inexorably slow. If it tastes good, spit it out immediately. That’s the general rule! LOL

I’m glad you are happy with your medical care. It takes us years to find develop relationships where our doctors and nurses listen to us and genuinely understand. I wasn’t diagnosed properly until I was in my 40s. So grateful to have survived to see a firm diagnosis followed by aggressive treatment.

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Dave,

I’m 46! Been misdiagnosed for 28 years! 😳😏😱😤

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Omg!!😬😱

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Even being misdiagnosed for that many years I’m feeling that I’ve had a milder case compared to others on here, mine has always looked like acted like shingles- mouth ulcers/rash, body rash/ achey body. It’s now been getting more prominent since November and things keep happening and showing up.. 😏

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