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Completely stuck where to go next...

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Unread 11-20-2012, 07:46 PM   #1
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Join Date: Oct 2009
Posts: 8
Default Completely stuck where to go next...

Hi to everyone haven't posted here for quite a few years now, will do my best to make this as brief and non boring as possible. Would love some perspectives and opinions on this if anyone has anything to share?

For over five years now I have been suffering from unsteadiness/balance problems, weak legs and at times fingers/hands.

My most debilitating symptom is the unsteadiness (feeling of walking on a trampoline/in a boat) and leg weakness. What originally started as a mild weak feeling in the right leg it has progressed to the above I am sorry to say. It seemed to be triggered in 2007 by banging my knee getting into a van - this brought the right leg feeling, then it came and went until slowly over several years it has progressed to permanent unsteadiness it did seem to get worse after a fall in my back garden on some wet wooden decking where I banged the back of my head and upper back - this could purely be coincidental? There used to be good days but now they no longer exist. My symptoms are a daily nightmare especially working as a teacher, heat makes the symptoms a lot worse as does stress.Over this five year nightmare I have seen two neurologists, a neurosurgeon and a rheumatologist.

Heat and stress are two major triggers for my symptoms. I went to Spain this summer and it was horrific, extreme heat fatigue, legs all over the place. Walking through what felt like treacle.

The following tests have been performed:

Two MRIs a year apart of the brain and full spine - clear apart from some minor disc bulge in lower spine and a few other minor irregularities that the neurosurgeon said would not cause my symptoms.

Two EMGs and Nerve Conduction tests - both clear. Complete blood panel for all of the usual several times - clear.

Several full blood panels - clear
Potassium Channel Antibody Test (some sort of ataxia test) - negative.
Coeliac Blood Test - Clear.
Wilsons Disease - negative
Neurological Examination - clear (although one neurologist noted dull deep tendon reflexes).
Lyme Disease - Western Blot/C6 Peptide (On NHS) - negative
Western Blot/ELISA - Sent to Igennex USA - negative

The neurologist I am currently under has quote 'assured me' this is not MS nor Parkinsons. I feel completely stuck in limbo I know this isn't psycholoigcal a perfectly healthy 24 year old gifted athlete shouldn't go from perfect health to having difficulty functioning on a daily basis.

I guess my main question here is where to go next, what would peoples advice be for more testing, routes to consider etc? Do I explore a different discipline other than neurology. There surely must be other avenues to explore...? I am not willing to give up on this yet even though the doctors have the opposite attitude.

Would really appreciate any input here thanks guys.
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Unread 11-21-2012, 11:34 AM   #2
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Join Date: Nov 2012
Posts: 8
Default I'm so sorry

I don't have many suggestions except have they tested your ANA Titter? It is to test for possible autoimmune issues.

I mostly wanted to tell you that I understand. For over three years I have suffered with many symptoms that ar severe. I too was a good athlete, I received a full ride in college. Most days I struggle to get out of bed. I have had 3 different diagnosis and two surgeries in less than a year. At this point I'm not sure what to do.

Just know that you are not alone.
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Unread 11-21-2012, 05:34 PM   #3
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Join Date: Oct 2009
Posts: 8

Thanks for the reply appreciate it, I have my notes from the hospital and I actually can't find reference to an ANA test on any of the countless blood form photocopies. Unless it is under a different name?

Sorry to hear you are also struggling, it is definitely reassuring to know there are others out there and your not alone. May I ask your symptoms? Are you in a similar position to me being stuck in limbo?

All the best, Paul
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