Discussions By Condition: I cannot get a diagnosis.

Frustrated after 4 months of MS type symptoms

Posted In: I cannot get a diagnosis. 10 Replies
  • Posted By: Anonymous
  • July 27, 2009
  • 02:51 PM

Hey all

Just really looking for a place to vent for a bit .
Back in March of this year (09), I had a few weird things happen. Increased dizzy/spacey type feelings, muscle spasms and facial cramps.

I am 42, white male, worked out for hte past 10 yrs 4 days a week, 1-1.5 hrs at time. Watch what I eat and hardly ever seen in the inside of a doctors office.

So I go and I have seen a GP, Neuro, ENT, phsycologist and a 2nd neuro this morning.

Here is what I have been dealing with daily:
ear rining - 24-7, headache .. 24-7, muscle spasms (move from one place to another all over my body), tingling (like pins and needles), sometimes a buzzing feeling, I have fallen for no reason just standing there then BOOM on the floor. I had an episode where mu left leg decided it would not accept any weight on it, it would just shake (lasted about an hour), blurry vision, memory issues and concetration issues. many things appear to get worse the warmer I am.

anyway I am sure that anough of a picture. I have had an MRI, EEG and never tests which of course have come back normal. Yet sympotoms persist. 1st neuro thought it likely was stress related (thus the trip to the psychologist (a few times) .. so to see I removed myself from projects at work to have a light load .. took a 2 week vacaton .. still they persist .. the psychologist does not think its due to stress .. thus the 2nd neuro .. who basically saw me for 30 minutes .. read what the otehr neuro wrote .. did like 3 tests and said.. you look ok to me .. come back in 3 months.

Does any of this sound familiar to anyone? I have read a bunch of things in sites like this one and it seems to me I have many of the symptoms of MS, it this par for the course if I do .. where it takes a long time to figure it out? any one rlated to this at all .. or am I just being overly concerned. I have just never been one to fret over medical issues and not go running to the doctor over every little thing ...

anyway thanks for letting me vent, for those that have been dx with MS I have much simpathy for you, pains in toes and fingers and unexplained stuff just popping up out of the blue ...

Take care and thanks again

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10 Replies:

  • Ask a doctor to check your blood for blood clotting disorders - and not just the more common ones. I have had uncontrollable shaking leg (just one side), blurred vision, and the other symptoms you listed. It took me over 10 years to get a diagnosis but it turns out that I was having transient ischemic attacks (TIAs) due to an undiagnosed blood clotting disorder. Doctors would think that I had MS until all tests (MRI, CT, spinal tap, neuro tests) came back negative. After 10 years of frustration I went to a neurologist at a larger hospital in B'ham and she immediately knew that my symptoms were vascular. She called a couple of days later with a referral to a hematologist who repeated the blood work and confirmed that I have antithrombin III deficiency and had been suffering minor TIAs. I have been on blood thinners for the last 3 years and am doing much better. Google TIA and see if any of the symptoms are familar to you. My blood clotting disorder is genetic. My doctor insisted that my family come in to be checked also and it turns out my father has a blood clotting disorder as well. He had quadruple bypass 20 years ago and no one had ever checked to see what was causing the problem. Turns out he has homocystene anemia (spelling?) which causes blockages in the heart. Hope you feel better soon.
    Anonymous 42789 Replies Flag this Response
  • You said: "I have had an MRI, EEG and never* tests which of course have come back normal."*Never? have any test came back normal or is that a typo?? What did your statement mean?? Sounds like to me you have advanced stage lyme disease, same symptoms, etc. Check this out: http://en.wikipedia.org/wiki/Lyme_disease
    Anonymous 42789 Replies Flag this Response
  • Like most everyone, yes I use a cell phone, not a lot but its normally with me or near me. My home phone is cordless and I have a wireless network in my house.I'll check out the links you have posted here. Thank you for your time in doing so.
    Anonymous 42789 Replies Flag this Response
  • Do you have any GI/stomach issues? Ask them to do a tilt table test. My mother in law has somewhat similar symptoms and also has GI issues and back problems. They think she has orthostatic intolerance (brain sends wrong signal to heart), but she won't let them test her.
    slynnkelley 1 Replies Flag this Response
  • Hi Jon:I've been dealing with similar symptoms. They seem to be ever-changing. It's the pins and needles in my feet and hands and now shoulder that have me convinced I have MS. My doctor, like yours also thinks it's stress-related and wants to put me on anti-anxiety meds. Went to a neuro last year who saw me for a short visit and said I'm fine. Probably just B12 deficient. My B12 numbers are "normal" - you may want to have yours checked. May also want to have thyroid and glucose levels checked also. Mine were "normal". One thing I HAVE learned (or not) is that "googling" your symptoms is probably not a good thing. Good luck to you! TC
    Anonymous 42789 Replies Flag this Response
  • Thank you for the reply.I might be able to rule that out as the symptoms do not relent when I lay down.Actually, if I am under the covers and begin to get too warm, muscle spasms seem to increase in frequency. Along with pain in my feet and toes.
    Anonymous 42789 Replies Flag this Response
  • I had the same symptoms since May 22nd. I was just diagnosed with Celiac Disease. A friend mentioned that she had the disease. They did a blood test that tests for an antibody to gluten and, BOOM, that was it. After months and months of people testing me for MS, Lupus, Lyme, blah, blah, blah. Some doctors told me it must be anxiety because they couldn't find anything (not because I'm an anxious person). It was Celiac. A very commonly missed disorder.Good luck. And I hope you feel better.
    Anonymous 42789 Replies Flag this Response
  • Thanks to everyone who has replied, I will checking into the TIA's more (so sorry you have to go through that for 10 yrs, fantastic that is was finally sorted out!) .. I had looked at that briefly as well as the other suggestion. Yes the "never" was a typo .. another issue I have where I type or say something completely out of context, reading it over I believe I wanted to put other tests (5 different blood tests .. for stuff like lime and such)Thanks again everyone.
    Anonymous 42789 Replies Flag this Response
  • I have been living with the same for 4 years now, had all the tests two years ago and all normal, even a lumbar puncture. I was then dxed with fibromyalgia a year and a half ago after I researched and asked to see a rheumy. Now I'm getting worse and have neurological problems unrelated to FM so it's back to the neuro for me. Apparently if you have only just started to have MS or only have small lessions an ordinary MRI scanner won't show anything up as it's not strong enough... similarly if you have remitting MS and the lumbar puncture is taken during remission nothing will show up... this could well be why your 2nd neuro asked to see you again, he will want to check to see if anything has got worse over time.Hope this helps.
    Anonymous 42789 Replies Flag this Response
  • Hey allWell its going into the 8th month, my Neurologist no longer is thinking that its stress related (neither did the psychologist). I kept a journal (thanks to reading in this area) it helped a great deal. I am now having physical therapy 2 times a week on "MS" program and have been started on Baclofen recenty (which doesn't do much so far, but I understand you have to take it for a few weeks/month before it begins to).I had a 2nd MRI of the complete spine, no lessions have been found, which is good. I suppose I am going to have to have a LP in the near future (uhg, turns my stomach thinking about that, lol). I have fallen more in the past 4 months then I did before I posted, once on the stairs, luckily just skinned up my shin. I hope the PT will help with that. I am doing a whole 1/2 my weight plus 55lbs on leg press .. in March at Gold's I was doing 800-900 on the leg press. crazy even after working out hard for 11yrs how you can change so much, some days I can't get to the sugar in its air tight container.The fight goes on, at least now it seems the docs are listening and not just pushing it off as in my head or too much stress. I have a rheumatologist now who is running yet more blood tests, said they are muscle indicators, that will be done today... so getting closer to figuring it out.Thank you all for this area and your kind responses.. Bless you all.Take careJon
    Anonymous 42789 Replies
    • November 2, 2009
    • 01:53 PM
    • 0
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