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The past two years have been a bit of an epic, but I'll

recap as concisely as possible...
The past two years have been a bit of an epic, but I'll recap as concisely as possible. I'll get the question out of the way up front: should I consider seeing a rheumatologist as some people have suggested, or just continue to let nature run its course? Here's a (brief?) summary of the history:
Spring 2010: While out for a walk, my feet started to sting, and then to burn, and then to "zap," and I got a massive dizzy spell and lost my balance. I managed to get home, but my feet continued to burn for several days and I took off work because it hurt too much to walk. I was 32 years old. My feet had fallen asleep often since my mid-20s, and my vision in one eye would become blurry on and off since around the same time. A doctor I met at a conference weeks later told me it sounds like possible MS and to see a doctor. Had a ton of lab work, including brain and cervical MRIs, NCV/EMG and blood (CBC, HIV, etc.), and everything was normal. The neurologist told me to relax and consider seeing a psychiatrist.
July 2010: While on a business trip, I broke out in hives all over my legs for the first time ever, and this continued for many months afterward and then stopped happening.
Feb 2011: Started seeing a psychiatrist, although most of my symptoms had waned, but I was feeling depressed and anxious. She put me on Zoloft and Wellbutrin and my mood improved pretty rapidly. In mid-May, my feet and legs began to burn again, my vision became worse, and I felt uncoordinated (tripped on steps twice) and unable to concentrate. Very soon, I lost my hearing in my right ear (sometimes with tinnitus and sometimes not) and the entire left side of my face began to tingle, with the ear almost completely numb. I put off seeing a doctor because of the previous year's experience, but I decided to go back to the doctor when I had double vision and my left leg actually stopped working on the escalator on the way there--it freaked me out. Had all the same tests again, this time including ANA, hormone (thyroid, testosterone and free testosterone), and Lyme blood work, as well as MRIs of my brain and full spine, EMG/NCV, visual and auditory evoked potentials, and an EEG. I had abnormally brisk knee-jerk reflexes (4+/5+ with clonus) and a "worrisome" right optic nerve, and was referred to a neuro-ophthalmologist. He said I have congenital cataracts and a "blurry disc margin," but that there was nothing to worry about. He took photos for my records. The neurologist's nurse said that the tests concluded no MS or CNS disorder and to try to relax.
November 2011: I started having stabbing pain in my right eye that would last 90-120 minutes and then go away. Based on the way the problem manifested, the best description I could find was "cluster headaches." I called the neuro and the nurse called me back and told me she was sorry but that it was not optic neuritis because it came and went and to see a doctor about migraines. My psychiatrist put me on Seroquel, an atypical antipsychotic, guessing that I may have a conversion disorder. The eye pain went away within a week and has not returned. It was by far the worst of all the bizarre symptoms I've had.
December 2011/Jan 2012: I had *severe* pain/soreness in my elbows, knees, shoulders and neck, which lasted about six weeks and then went away. I had the same pain in my inner elbows the previous two years for several months at a time but always thought it was from working out too much; I had stopped working out by this winter because of the foot and balance problems, so this time it was inexplicable. The hives returned intermittently.
March 2012: Had allergy tests and the only things I am strongly allergic to are cats, autumn ragweed, dust mites and cockroaches. The allergist said my symptoms sound neurological and that allergies don't cause the sorts of problems I've had.
July 2012: The foot and eye problems have returned, I lost my hearing in my left ear again for several days (it returned), and (to a lesser degree) have diminished balance and coordination. I weaned myself off Wellbutrin because it was exacerbating the tremors I have in my hands and seemed to be making me clumsier.
I've had all these inexplicable problems while medicated and before and after I was on medications for depression and anxiety. Two different neurology offices have told me that I don't have MS and that I need to find a way to be less anxious. I still see my psychiatrist monthly and feel much less stressed and much better balanced, but the symptoms persist. Some people have suggested I see a rheumatologist, especially because I have eczema and my sister has Hashimoto's thyroiditis. But I've had ANA and rheumatoid factor blood tests, as well as thyroid hormone, and all the tests were normal.
Should I just continue to live this way or pursue it? I'm really tired of people telling me that these problems are all in my head, caused by anxiety. :(
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Answered in 1 hour by:
7/9/2012
Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 11,443
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
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Dr. Rick :

Hi. I'm online and happy to answer your question today.

Dr. Rick :

Thank you for that extensive history.

Dr. Rick :

Well, it sounds like you have spent quite some time trying to get to the bottom of what is going on. I am sure that your previous doctors have thought of, and ruled out, all of the common and easily treatable conditions that could be causing your issues. Would you say this is a correct statement?


Dr. Rick :

Well I think it might be time for you to take a very difficult, and bold, step to see if you can get some relief. It seems obvious to me that your current doctors have reached the bottom of their bag of tricks and, yet, you are still having these problems. Is this something that I'm going to be able to figure out using "chat" as my only diagnostic tool? Of course not....I'm good, but not THAT good lol! I do, however, think I can point you in the right direction.

Dr. Rick :

It sounds like you have been receiving good care from very qualified physicians without any significant lasting improvement in your condition. At this point I think the best thing you can do would be to gather up copies of all your medical records and travel to a large University Teaching hospital. At an institution like that you could be evaluated and treated by a team of sub-specialists who are at the cutting edge of their respective fields. The best thing about these large teaching hospitals is that consultations are available with Professors and leaders in their field by just walking a few steps down the hall.

The Mayo Clinic in Rochester, Minnesota is an excellent example of just such a place as this. That being said there are many excellent teaching hospitals all across the country and I am sure that there is one near you.

If you could tell me what large city you live near and how far it would be possible for you to travel in seeking treatment I would be happy to give you some names. Of course, you could also ask friends and associates or check the internet yourself. Let me know what you would like to do.

Dr. Rick :

Does this make sense to you?

Dr. Rick :

Please remember the top 3 ratings are positives [Excellent service is my goal] and this is how we are compensated. Rate my answer when you are satisfied. If you feel the need to rate low, please stop and reply to me via the REPLY TO EXPERT button with the issue you have. I will be happy to continue further and do everything I can to provide you with the service you seek.

Otherwise, a high positive rating is very much appreciated, bonuses are great, and find me anytime for follow up.

Let me know if you have further questions.

Dr. Rick :

I see that you are offline. I'll switch over to the Q&A system. This system works a lot like 'text messaging' but an email is sent to each of us anytime something is posted to this thread. We can continue to work on your question there..... :)

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Have a good day.
Dr. Rick
Dr. Rick, Board Certified MD
Category: Eye
Satisfied Customers: 11,443
Experience: Ophthalmology since 1994 with Retina sub-specialty interest
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Customer reply replied 5 years ago
Hi,

Thanks for your extensive reply. I was offline (I didn't even realize it's possible to chat online here.) and the notification emails went to my spam folder. Thanks for your advice. I know a photographer who works for Johns Hopkins in Baltimore, MD (I live in D.C.), so maybe I will take him up on his offer to connect me with his contacts at some point. I'm just so frustrated because I feel as if doctors are getting tired of being asked questions by someone who has "passed" all the diagnostic tests without any tell-tale signs of a major problem. I understand that they are doing their jobs as necessary, but it's just frustrating and makes me feel as if they think I am a neurotic, but not neurologically impaired, hypochondriac. Thanks again for your attentive reply.


David
I agree with your plan: If you can get evaluated by the docs at John Hopkins they will do an excellent job....

Let me know how things turn out.
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Dr. Rick
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Experience: Ophthalmology since 1994 with Retina sub-specialty interest

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