???? Behcet's. ????

[Bjm0360]

Hello all,

I know this may be long but I have been having "flares" of an undiagnosed illness for 5 years. I am currently in the midst of one and I went to see dermatologist yesterday and she seems to think I have behcet's. Wanted to share and get thoughts from the people who know it best.....

The flares almost always start with pain in my legs. Shins first then Shins, calfs, thighs, butt.... the pain usually roams very randomly but this time it started as a roam and now sets in as a longer crushing pain. Roaming joint, muscle, eye, and what seems like organ pain. I also get muscle spasms throughout body.

I get very strong headaches that usually start behind one eye and feel like a tension headache. I also get long and short stabbing pains in my head. During my current episode and 2 previous I also have very apparent neurological symptoms. Vertigo, brain fog, and a tightness in my neck.

I have gastro symptoms as well. Constipation, diarrhea, abdominal pains. Staetorrhea, Upper right quadrant pain.

Urinary symptoms are frequency, and sharp random pains in my groin, testicle, and penis.

Cardiac, I have heart palpitations and the very strange feeling that my blood pressure is dropping out, or conversely feels like it is high.

Random symptoms:

Hives ( specifically in one patch on my left rib cage only )

Rapid weight loss ( I have lost 10 lbs in one week and 30 total during first episode)

Interrupted sleep

Red irritated eyes ( every time I am in a flare)

Occasional sore throat

Nasal drip

Strong Fatigue

Occasional mouthe sores ( usually preceding a flare )

Genital Sores ( Normally in my hairline )

Rash ( They usually resemble contact dermatitis and appear on random areas of my body. Wrists, genitals, anus, shoulder, etc )

I hAve had ultrasounds, ct scans - Negative

Doing a brain MRI, and ECG next week

Bloodwork:

Sed Rate - 3x always negative

C-React Protein- 3x always negative

CBC - 7x always in range

Metab Panel - Always in range

Cortisol - negative

RA and Lupus serum - negative

Lyme (Elisa) - Negative

HIV - Negative

ANCA - negative

ENAS - negative

FERRITIN - Slightly elevated

CELIAC PANEL - All negative except Gliad AB, IGG positive

TSH & FREE TS4 - In range

Biopsies: celiac and Chrohns- Negative

Any advice would be appreciated!!!

[Zevas]

Hi, welcome to the complicated world of bechets, sorry to hear you are going through such a rotten time.

Firstly I would see a rheumatologist and find one who specializes in bechets as we can all have different branches of bechets, however your dermatologist seems to be on the ball getting you all the right tests done, unfortunately it's a long process tackling all the different components of bechets. I have had bechets for most of my life with different levels of flares and remission throughout.. if I could give myself advice at my first diagnosis it would be this.

Get a good team of doctors whom you trust and research all the medications.

I have these in my team,

Rheumatologist (oversees everyone)

Gp who specializes in chronic illness, so important

ENT

Gastroentrologist

Physiotherapist

Naturopath

Acupuncturist

Chiropractor

All of these communicate with each other.

Manage the disease yourself too, a good clean diet (well balanced, no stupid fasting) and lots of strength exercise is so important. Clinical Pilates has been a revelation for me and bike riding

Cut out all processed and refined foods and look into good gut health (this is the epicentre of autoimmune)

Consult your doctors first before you try new things.

You may have to change your lifestyle sometimes to look after bechets so rest in a flare up and when your not flaring look after the body.

I liken dealing with bechets to like being a marathon runner.. it's about endurance keep a steady pace.

It can be alot of information to digest on the first steps and overwhelming so take care of your mental health too, these forums are great for connecting with others with bechets. You will hit alot of brick walls and dead ends but remember there is an answer for it.

These are things you can start introducing now, I was pretty horrid to my body at the start and wish someone had told me the above at the beginning. Although bechets will never disappear you can make the good times better!!

You didn't say if they haven't given you any drugs yet, predisolone is a great controller of a flare so I would be hitting them up for that if you are flaring right now. This can be taken in short bursts although it's a drug that's not very nice in the long term it is magic!!

Don't be dismayed if your next tests come back negative, just keep trying.

The muscle spasms and sleepless nights strong fatigue could also be fibromyalgia, which is hard to diagnose. For these acupuncture works wonders rather than having to take hardcore drugs. This condition can run alongside bechets too so don't read google on this as it will freak you out just ask your specialist to test you to rule it out.

For the eyes see an ophthalmologist these guys will sort you out if you have uveitus.

Hope this helps you a little, good luck.

[Bjm0360 in reply to Zevas]

Thank you very much for the great information.

I absolutely agree with you about diet and exexcise. I changed my diet and was in great shape after a very nasty flare up a few years back and I fell off the wagon. Started eating out again and was working 80 hours a week. I believe over exertion is what triggered my current flare. I haven't had symptoms in almost 2 years. I let it lull me to sleep...

Finding the proper Dr. Is the challenge. I have been to several Drs and they just don't get it. I am from Chicago so if you have heard of a good Dr here please let me know.

[rooser1 in reply to Zevas]

@Bjm0360

This is a wonderful response. I agree with all of this except the fasting bit- Ill fast every so often to help control arthritis and to settle down stomach issues. Also to follow up on ophthalmologist- ask for a slit lamp test.

Im really surprised the C reactive protein is negative. Like that is crazy to me. Everyone here is gong ho about using steroids, I have never used them so I can not account for a personal experience... I do notice that many people use steroids and ultimately find themselves in the same boat once the course is over.

Start probiotics- Nexabiotic (23 strain from amazon $22 for 60caps and acidophilus (now foods- amazon 2Billion CFU $20 for 250 caps) and cut all sugars out of your diet along with processed foods. Eat anti-inflammatory foods and herbs such as turmeric, coconut, oregano. I swear the probiotics and diet change is what brought me out of my flare.

I too had lost 20 ish pounds in under 3 weeks and my legs felt like sledge hammers hitting every inch of my skin. I couldnt stop crying from the pain. The fatigue is insane. Sleep. Your body needs it. Sleep as much as you can and also stay hydrated.

Yah- kudos on your dermatologist starting the tests- find a rhuematologist. Are you in the US? There is no specific test for BD, more so what can be tested negative and lump symptoms together. The oral and genital ulcers is a pretty good set. Also sounds like your eyes may be inflamed.

As for your IGG testing positive, thats linked to IgA with mucosal membranes. I tested slightly positive for sjogrens- which makes sense...dry eyes and mouth. I am not positive for celiacs or crohns but it is incredibly likely i am missing the sucrase enzyme now since ive started to have symptoms of BD (the body is a crazy thing). Either way- cut bread, carbs, sugars. Youll see a HUGE energy difference- plus those are inflammatory.

If you get started on Colcrys down the road for ulcers, start at half a dose a day (so one pill a day). It is hell on the stomach. Forever diarrhea. Took me about six months to get used to it. But it works and is awesome.

Good luck boop-

[Giac]

Hi,

I think you should consider prednisolone to control flares up, especially when neurological system is involved. However prednisolone should be avoided as a regular medication so you should probably consider more sophisticated immunosuppressive drugs such as azathioprine.

The above is my personal opinion based on the description of your symptoms , you should ask your rheumatologist and follow his/her advice.

I am followed by the Behçet desease centre in London Royal Hospital, maybe you should consider booking a visit there.

Good luck

[UKADMIN Partner Behcet's Syndrome Society]

Hi Bjm0360

Thank you for sharing your symptoms and I hope you are successful in finding the right diagnosis. There are 3 Behcet's Centres of Excellence around the UK, in Birmingham, Liverpool and London. If you dermatologist thinks you may have Behcet's, she may be able to refer you to one of these centres. Please email me for more information or look on the home page of our website for details of each of these: behcets.org.uk and [e-mail]

Warm wishes to you.

[Bjm0360 in reply to UKADMIN]

Hello! Thank you for the response. Unfortunately I am from Chicago.

If you have any advice on A Dr. Here I would greatly appreciate it!

[May_kost3 in reply to Bjm0360]

I know this was a thread from two years ago, but as I suffer from Bechets and will occasionally browse forums I saw this thread and happen to reside in Chicago as well! I found that Dr. Erin Arnold (rheumatologist) in Skokie has helped me manage my symptoms quite well. 4709 W Golf Rd, suite 1200, Skokie! I'm finally at a place where my flares aren't as terrible as they were a few years back. She's incredibly nice and caring, especially after many doctors dismissed my symptoms for anything else but Bechets. Hope this information is not too late!

[Bjm0360 in reply to UKADMIN]

Thank you for the reply!

I am from Chicago. If you have any resources here please let me know. I would greatly appreciate it.

[rooser1 in reply to Bjm0360]

jzeis Where is that list of Dr's thats always going around for USA?

[jzeis in reply to rooser1]

Hi rooser1, sorry for the delay -- I was out of town for most of the week and didn't see your question until now. The list of doctors for the US is on the American Behcet's Disease Association website, but some of the listings are seriously out of date. At least it gives you a start:

behcets.com/site/c.8oIJJRPs...

I've found you get the best results by entering the two-letter initials of the state you're interested in. Don't enter information in ANY of the other fields, and click "Submit."

Joanne Z.

[rooser1]

@Bjm0360

(i reposted it didnt take the tag)

Zevas had a wonder response. I agree with all of their response except the fasting bit- Ill fast every so often to help control arthritis and to settle down stomach issues. Also to follow up on ophthalmologist- ask for a slit lamp test.

Im really surprised the C reactive protein is negative. Like that is crazy to me. Everyone here is gong ho about using steroids, I have never used them so I can not account for a personal experience... I do notice that many people use steroids and ultimately find themselves in the same boat once the course is over.

Start probiotics- Nexabiotic (23 strain from amazon $22 for 60caps and acidophilus (now foods- amazon 2Billion CFU $20 for 250 caps) and cut all sugars out of your diet along with processed foods. Eat anti-inflammatory foods and herbs such as turmeric, coconut, oregano. I swear the probiotics and diet change is what brought me out of my flare.

I too had lost 20 ish pounds in under 3 weeks and my legs felt like sledge hammers hitting every inch of my skin. I couldnt stop crying from the pain. The fatigue is insane. Sleep. Your body needs it. Sleep as much as you can and also stay hydrated.

Yah- kudos on your dermatologist starting the tests- find a rhuematologist. Are you in the US? There is no specific test for BD, more so what can be tested negative and lump symptoms together. The oral and genital ulcers is a pretty good set. Also sounds like your eyes may be inflamed.

As for your IGG testing positive, thats linked to IgA with mucosal membranes. I tested slightly positive for sjogrens- which makes sense...dry eyes and mouth. I am not positive for celiacs or crohns but it is incredibly likely i am missing the sucrase enzyme now since ive started to have symptoms of BD (the body is a crazy thing). Either way- cut bread, carbs, sugars. Youll see a HUGE energy difference- plus those are inflammatory.

If you get started on Colcrys down the road for ulcers, start at half a dose a day (so one pill a day). It is hell on the stomach. Forever diarrhea. Took me about six months to get used to it. But it works and is awesome.

Good luck boop-

[SexChoc75]

Sorry you're going through this. First thing, find a great rheumatologist. Did I read correctly that you're from Chicago? How far are you willing to travel? I travel just over an hour to see mine. He's in Milwaukee. He's wonderful. He's even spoken at Behcet's conventions so he knows his stuff. If you are interested in his info, let me know. As far as controlling your symptoms, steroids would be the best course, along with either Colchicine or Azathrioprine. I was on Colchicine first. It worked a bit, but not enough. Azathrioprine has worked wonders! I've finally had a decent panel come back recently. When the level are too far off, we just adjust that. I'm also on doxycycline for the I've been on prednisone for the duration since my diagnosis. I also get Botox injections for the headaches. But my neuro-Behcet's is complicated even more because I have a spinal cord stimulator implanted. I have spina bifida & have have 7 back surgeries to remove/repair herniated discs. So I've always had the neurological symptoms in my legs & feet. Now it's getting to be my whole body. I fall a lot. I will also fall asleep whenever, even standing, yet, never while driving. New mri scheduled but I'm recovering from surgery on my stimulator battery last week. So I guess I'm not the "norm" when it comes to the neuro-Behcet's. I used to have mouth ulcers, especially on bottom lip, at any given time. Wasn't herpes, even valtrex didn't help much. Azathrioprine really is a wonderful medication in my case. Hope you find what works for you. If you'd lie the name of the Doctor, just ke know. Have a great day.

[Jdrobyski in reply to SexChoc75]

Hello, Would you be willing to share the name of the MD in Milwaukee? Thanks much!

[Jdrobyski in reply to Jdrobyski]

SexChoc75 Would you please share the name of the Milwaukee MD that has knowledge of BD? If you would kindly email me the name I would be grateful to [e-mail]. Thanks so much

[SexChoc75 in reply to Jdrobyski]

aurorahealthcare.org/doctor...

I'll email it as well. Good luck!

[SexChoc75 in reply to Jdrobyski]

aurorahealthcare.org/doctor...

Good Luck!

[Bjm0360 in reply to SexChoc75]

Yes, I would be very interestedin the name of the Dr

[SexChoc75 in reply to Bjm0360]

aurorahealthcare.org/doctor...

I hope this helps!

[sassyscript in reply to SexChoc75]

I'm interested in your doc's information please share

[2106]

Hi. I really do feel for you, I have had various pains sores eye problems the list goes on. The worst pain that I felt was when I had a very low Vitamin D deficiency, the pain in my legs and feet were terrible. Also had the same pain in my head as you. May be worthwhile getting a blood test done. I now take supplement every other day pain now under control. I also had IBS symptoms but I found that coffee, milk, wine and a few others caused this. You need to keep a diary of what you eat, it will help and how you feel daily because sometime it may be a build up of things that you eat, drink. Also I don't use any soap etc on my body to wash as this causes ulcers which take months to go. My sleep has always been bad, it seems that my body does not regulate my heat very well and this is why I wake up many times in the night. I found that using natural products really does help, like toothpaste if you have mouth ulcers Aloe Vera Forever White is brilliant. All the best, it will get better but at the moment it seems that it is one thing after another. Hope that some of the things I have written may help

[Bjm0360 in reply to 2106]

Hello!

You know it's funny you mention Vitamin D. I was tested twice. 17 on the first test and 27 on the second. I wonder how many other people here have low Vitamin D

The Dr said it was the lowest he had ever seen. I am a believer in herbal remedies and diet. I think I pulled out of my first 2 really bad flares using high dose Vitamin C, Probiotics, Curcumin, and Grape Seed Extract. Nothing seems to be working this time.

I got some tea from an herbalist and it temporarily calms my body but doesn't last long....

[2106]

Hi. I was told that since I have lots of inflammation in my body because of the Behcet's it is absorbing my vitamin D so I must keep taking supplements. I must say it does keep the pain away. Also we are very lucky that we have spring water no toxins and we grow all our own veg organically, I am sure that this helps me keep things under control. If we go away I only ever have bottled water no tap water. Also coconut oil is brill, use for cooking. Do you keep a record of what you eat and drink? I also take manuka honey 15+ morning and night when I have joint inflammation

[Bjm0360 in reply to 2106]

I am not keeping a food journal but I'm sure that I should be.

Where do you get your manuka honey?

[2106]

I live in England, we can get it from Health shops, supermarkets or look on line. You wouldn't need anything higher than a 15+ could use 10+ as once over a 15+ this is used as a poultice to draw out an infection to help heal ulcers on the skin more for medical.

[distanttree]

When in doubt several days of boiled rice vegetables fish.

Default food to clear symptoms.

Then when you have found a combination of foods that leaves you comfy.. Introduce one new food every few days.

The food needs to leave the bowels to stop the body reacting to it.

This time varies.

It's a live experiment..fun..

I can eat one a apricot perhaps two.. But trouble with three..Ho hum..

What fun..

[gillianTS]

Hi Bjm0360

Did you ever get an answer to the nasal drip your were getting?

Thanks, Gillian