LUPUS UK
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Frustrated and Helpless

Since 2008 I have been dealing with an unknown disease(s) or disorder(s)--which may have been dormant in my system until now, but we have no idea. Doctor after doctor has given up on me, some even telling me I'm imagining it, despite real symptoms and problems. My guess is that whatever it is, the symptoms belong to multiple problems, but I don't know. I am 28 years old, caucasian, was born in Colombia but have citizenship in the United States and live on the East Coast (USA). I am currently a college student and am hoping to graduate soon, but am worried that my health problems will cause issues for that.

Here's the more pressing issues:

> an electrical shock feeling that goes from my neck to my fingertips, which has become constantly painful; and causes jerking sensation in hands.

> neck pain (esp near base of head), back pain (esp between shoulder-blades and and lower back), tail bone pain that radiates down legs (diagnosed as sciatica)

> re-occurrent oral thrush (one case sent me to ER with severe sores)

> joint pain and stiffness

> stomach, intestinal issues (alternating between constipation and diarrhea)

> headaches, sometimes reaching migraine status (and my migraines give me sensory problems, where I can feel textures just by looking at them)

> trouble lifting my hands or gripping, spasms in hands (and more rarely in feet); these tend to make me drop things

> vision change that the eye doctor couldn't see (I try to look at something, but my vision keeps shifting right while I do).

> more irritability and much more fatigue than I used to have 8yrs ago

> Paresthesia in 2010 that put me in the ER for about 6 hours, but they couldn't figure out what had caused it

> Trouble remembering words when I'm speaking (my professors have noticed it too), and problems staying on one thread of thought.

> Glands (sweat, oral) don't seem to work correctly and vaginal seems to get blocked a lot more in the last year.

> Ulcers more often now in vaginal area and mouth area

> Gallstones 1 year ago, still at risk for more.

> Irregular heartbeat/racing heart-rate is coming back (had an ablation to fix this in 2003).

> tingling in hands, fingers, scalp and feet; also have tremors in hands that I had since age 3. Also have tingling (likely from pinched nerve) between shoulder blades

> Unusually dry skin, and new diagnosis of aquagenic urticaria (blisters from water)

> nearly constant issue of motion-sickness, vertigo; tend to run into things a lot

> have been falling down the stairs a lot more or having a leg give way underneath me for no apparent reason.

> Ringing in ears

> Often extremely exhausted during the day and high levels of ADHD type symptoms (mind racing) at night.

> went from 136 Ibs in 2014 to 186 Ibs in 2017, and can't seem to loose weight, even with exercise.

> have pain with my tailbone, likely from a fall off a horse in november 2016.

> have an intolerance for heat (get rashes and welts), but am relatively okay with the cold (just makes me sleepy).

Am currently seeing the spinal doctor, to rule out any injury or disease to my spine. So far, it doesn't appear to be spine damage of any kind. He believes that it's something neuro-caused but said he would keep trying for as long as he could. I have plantar fibromatosis in both feet; when I was younger, my left foot was the problem--now it's 'dormant' and my right foot is having very painful issues. I had an ablation (surgery) in 2002 for an irregular/fast heartbeat issue, and had a chip of wood in my eye taken out around the same time (no lasting damage). Have had three serious falls off horses, but no damage to spine or head as far as anyone can see; did get whiplash from last fall but didn't seem to permanently damage my head or neck. Have trouble swallowing (always have), mild asthma, cracking knees and a chronic dry cough. Have history of gallstones as well, but the back pain has been there longer than the gallstones. Also have had swelling and pain in the joints for many years. From 2013-2015 I had a lot of bladder and kidney infections, but they stopped happening for unknown reasons. I had a tick bite that worried my doc and me, which caused lyme's-type symptoms--but without the weird target look; it's still visible on my hip as a purplish mark.

I had a lopsided skull [for unknown reasons] when I was born--has mostly filled out but still slightly disproportional in the face. Had failure to thrive syndrome as a baby, as well as some issues sitting upright, standing, and walking, but was okay walking until a few years ago, when it started up again. I still lean to left when sitting up, and have uneven hips. I am getting my wisdom teeth out in about 2wks as well. I have two grandparents who had MS, and one who had ALS. I will be getting an MRI in a few weeks to look at my skull for any issues, like lesions.

I am currently on Gabupenrtin 300mg, Carbamazepine (for the facial nerve disorder), nortriptyline (sleeping pill), and OTC thyroid meds (which do help). My diet is pretty normal, as is my daily routine. I'm sorry for the long post, but I'm desperate for answers. I probably missed some symptoms, but this is my best description for now.

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Hi - sorry you are as yet undiagnosed and feel disbelieved - there's really nothing more distressing than this kind of uncertainty i know.

My only thoughts are that vaginal ulcers are quite unusual but otherwise many of your symptoms tarry with mine. I have Sjögren's Syndrome - which can often present similarly to other autoimmune diseases, especially Lupus, MS and RA.

Sjögren's can also be confused for a rare form of Vasculitis called Behcets. A key symptom that distinguishes Behcets is oral and vaginal ulcers I believe. It can be very hard to diagnose, but the ulcers are highly suggestive of this and it's very rare apart from in certain countries such as Turkey - so many doctors may not think about it as a possibility.

I suggest that you look it up and if it seems a possible match then you try to find a rheumatologist who specialises in Vasculitis.

vasculitis.org.uk/about-vas...

I just googled for USA info and found this rarediseases.org/rare-disea... which may be of interest to you too:

"Behçet's syndrome is a rare multisystem inflammatory disorder characterized by ulcers affecting the mouth and genitals, various skin lesions, and abnormalities affecting the eyes. Symptoms include mucous membrane lesions of the mouth (canker sores) and genitals (ulcers) that tend to disappear and recur spontaneously. Inflammation of the eyes (anterior uveitis, posterior uveitis, or panuveitis) also affects individuals with Behçet's syndrome. Additional systems of the body may also be affected including the joints, blood vessels, central nervous system, and/or digestive tract. The exact cause of Behçet's syndrome is unknown."

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Behcets was the first thing that came to my mind when you said vaginal ulcers.

You certainly sound like you have done form of AI disease. The electric shock pain that you describe can be a symptom of MS. Have you had an MRI of your head? Had anyone examined your eyes for optic neuritis?

I totally agree with Twitch. Bechet's is what I would want be investigated for. Can you find a medic who specialises in this area? Its so important to go to someone with the knowledge that is needed to diagnose you. Anyone who dismisses your long list of symptoms probably feels out of their comfort zone so its easier to say its all in your head.

I'm so sorry you are having this battle. Many of us including me had to fight for years to get a diagnosis. Keep fighting on. Once you meet the medic who can put a name to your condition you will feel relief as you can then start treatment

Keep posting on here, we're all here to support each other.

Good luck.

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Never heard of Behcets, but thanks for letting me know! I'll be sure to look into it. What is an AI disease? I'm waiting on the scheduling department to schedule my MRI. I had one when I was little (due to tremors in my hands) that said there were no lesions. Another I had when I was older (due to migraines) said again 'all clear' but did state I had an unusual amount of activity in one area, which was later determined to be related to hypervigilance.

Thank you very much for your help and suggestions.

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I apologize, but I forgot to answer your question about MS. I've suspected for a while that it may be MS, but no answers yet. They have examined my eyes for any damage but said there was none--I have no answers for why my eyes have that issue. However, my vision did just change from 20/20 to 20/30 in one of my eyes--lucky me, both my birth parents had it.

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Thank you, Twitchytoes :) that helps a lot.

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Sounds like Behcet disease but I'm not a doctor, so don't take what I'm saying as gospel. But if that's what is affecting you, you will need to find a specialist who understands the disease and knows how to deal with the various things affected by it because it isn't that common even in those of us with several autoimmune diseases.

There is a good forum used mostly by US here inspire.com/search/?group_i...

Have a look, you may find how others got diagnosed and what clinics/hospitals treat this in your state/area.

You took a good step to post here, however, because that's how most of us managed to get to a diagnosis: we asked questions in many forums, some were not applicable, others weren't helpful but some have been spot on. Armed with that information we were able to properly discuss our cases with the medical profession and little by little we got there.

Don't despair - the road to diagnosis may be long and hard but what else can one do but persevere? Stay strong, be good to your body (watch the stress and sun, keep hydrated and sleep as your body tells you to) and keep reading and asking questions. The more you learn, the better.

All the best.

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Thanks, I really appreciate it :)

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Hi there,

Sorry to hear that you are dealing with all of this. I'm sure it must be exhausting.

Some of the things you said set off a couple red flags for me (btw-thanks for breaking them down so clearly). First, you NEED to stop with Spine and see both a good Rheumatologist and a good Neurologist. Show them both this exact list and give them each other's contact info.

What you are experiencing are most definitely neuro and immunologic. I would prioritize the migraine symptoms you're having, as (and I really don't mean to scare you) seizures need to be ruled out. There are types of seizures where you stay perfectly alert but experience odd things like exactly what you said about the textures. A friend had a version where he could "smell" colors. It's not life threatening but autoimmune disorders affect the central nervous system, so those experiences added to your nerve pain and speech/memory problems need to be evaluated asap. As a shoulder to lean on, I have seizures that we thought were mood problems, migraines and other phenomenon. Once we put the puzzle together, turns out it's related to the Lupus or, at the very least, influenced (modulated) by my immune system.

There are a number of other symptoms you've laid out that definitely make you a candidate for a Rheumatology consult. They can dive deeper into what might he specifically going on. There are hundreds of autoimmune conditions, so you'll want to work with someone who will take the time to track whatever it is down. It probably won't happen in one visit but find someone you like, keep at it and I'm sure you'll get your answers.

Also, I'm in the US as well, but out west in LA. If you want to let me know what city you're in or have access to, I'm more than happy to ask my doctors for a referral in your area.

Feel better!

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Thanks :) I stick to the Bridgeport or Morgantown (but preferably not inside of Morgantown--talk about stressful driving!) region of West Virginia. Bridgeport seems to have extremely good medical care and tests. I'm working on getting a neuro consult, but my doc claims I have to get an MRI done first. My spine doctor is sympathetic to the fact that my doctor seems to be...not great....so he's trying to help me for as long as he can. After that, I'm going to switch to a Bridgeport doctor I think, although I'm somewhat worried I'll loose my meds in the process (WV is extremely paranoid of any kind of pain-relieving medicine).

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