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I'm looking for some direction with some problems that I have had since
December 22,2000. On that date the back of my head on the left side
went numb nd stiff, on the 23rd it was the left side of my neck, on the 24th
it went into my left hand. Of course I thought that I was having a stroke
so I went to the emergency room - no stroke thankfully. None of these problems went away and my doctor sent me for another scan on my cervical
area. This seemed to show some shadow so he sent me to a neurologist
and he sent me for a cervical MRI which showed the same thing about the
size of a dime. He then sent me for a brain MRI because he was convinced
that it was MS. Nothing showed on the brain MRI so he sent me to a neuro-
surgeon to make sure it wasn't a tumor. Back to the hospital I went three
months later to see if the mark was still there; it was now about pencil point
size. The neurosurgeon said it couldn't be a tumor because tumors don't
shrink so it must be MS. I didn't know that there were only two things it
could possibly be! Back to the neurologist I went and he did an EMG for
carpal tunnel - negative, then a spinal tap to look for bands in the spinal
fluid - no bands, then an evoke potential to make sure there were no lesions
that didn't show up on the MRI - no lesions. So I am at square one but he
still thinks this is MS so he sends me to an MS specialist and he says it isn't
MS. Meanwhile nothing has gotten better. After 18 months of this with no
change my family doctor gave me some valtrex thinking maybe I just had some virus. After 3 pills I couldn't see out of my left eye. I felt that I haa reaction to the valtrex but the opthamologist, neurosurgeon, and MS specialist all blew that off because they said valtrex will not do that. I have
since found in a magazine ad for valtrex that on rare occasions it will create
vision problems - I guess that's me. Anyway the opthamologist told me it was probably MS. I told him that a specialist had told me no 18 months ago and all he could say to me was "that was then this is now". Nice, huh?
Anyway he told the neurologist to put me on solu-medrol (steroids) 1000mg
a day for 5 days with a nurse coming to my house for 4 hours a day to administer it. The night after the 4th day my heart went crazy and when the nurse came the next day she sent me to the emergency room and stopped the intravenous. It had killed my potassium and God only knows what else. Meanwhile the neurologist had sent me back for another brain MRI with optic nerve slices and everything was negative - no lesions again.
He was so sure that he would find lesions that even before the MRI he told me to go home and choose which MS medicine I wanted to go on. When he
saw the new MRIs he didn't know what to say. All he could do was throw his hands up in the air and say he didn't know what the problem was so he
sent me back to the MS specialist who had said it wasn't MS. Well what does he do but tell me now that it is MS because he thinks the eye problem
was another attack. So for 18 months nothing had changed at all but I take
3 pills and now I have MS. I just wasn't buying into this theory and I asked
him why nothing had changed for 18 months and allof a sudden I have added
problems. He couldn't answer me. I also told him that if I wear a support
glove when I'm doing crafts my hands aren't quite as bad and all he would
say to me is that my hands were a different problem. Wait a minute, my hands were the problem to begin with. He recommended that I go on MS
shots but I just couldn't do this because I wasn't convinced and to me the
medicine is scary. By the way nobody revisited the original "mark" on the
cervical area to see if it was still there. I kind of gave up on the medical profession and went to a nutritionist who got my system straightened out
in that respect anyway. I also was seeing a chiropractor to help my walking
and my hands. She at least gave me the feeling that someday I would get
up and walk okay instead of when will I be in a wheelchair. After all the steroids a friend recommended that I have a Lyme Disease test because about 2 months before all of this started my husband and I had been hiking
in Maine and had stayed in a cabin in Virginia on the way there. I went for
the test and of course was not feeling the best from the steroids (upset
stomach and no energy) and the test came back negative. Actually they
told me negative but I just talked to my doctor's office and they said it was
1.0 (whatever that means) and .99 or below is negative and 1.2 or above is
positive. I asked the nurse what about the people 1.0 - 1.2. She couldn't
answer me. Does this mean that I could have taken something 2 years ago
if it's Lyme Disease and would not still be going through this? Anyway in the
meantime over the last 2 years it has affected my walking, sleeping - what
is that, and also has gone into my right side. This started happening right after the steroids. Could they be the culprit? I did see on a web sight that
under no circumstances should you give anyone with Lyme Disease even the smallest doses of steroids. You couldn't get much bigger a dose than what they did to me. I went to accupuncture and that helped some with my legs but my hands have been 24/7 stiff and a little numb since all of this started.
By the way the vision came back but I don't have as much light in that eye as the other. I think that I am just stuck with that. So over 2 years has passed since the steroids and I feel like I am getting somewhat weaker in my
legs but don't understand it because I can swim and exercise in the pool with
no problems, it is just the walking. I think it has become one vicious cycle;
my neck and hands are still stiff, my legs are weak, I'm lucky if I sleep 3 -4
hours a night, of course the lack of sleep has really screwed up my equlibrium
and that's no fun. I walk like I'm drunk sometimes and I don't even drink.
Because of the problems and the doctors letters to an insurance company
after my husband lost his job I can't get anything but high risk insurance.
That costs $482 a month with a $2500 deductible. My husband went to work part time just to pay the insurance and now we find out that the high
risk people are going to drop me in December because part - time people can
qualify for $1000 worth of insurance a year. That's right $1000/year, can
you believe it! That's why I so desperately need to find some answers beforethen. Anyway one night somebody came into my husband's workplace
and told him that her husband had some of the same problems as me and he
had fallen down and ended up with an orthopedic surgeon and he corrected
everything. Well I had fallen down too so I thought it was worth a shot. Well he even thought it might be MS because he couldn't see anything on the old MRI's that would indicate it was anything he could correct. He was
puzzled though that my hands had been this way 24/7 without any relief
especially after all the steroids. So he ordered a cervical (yeah) and a brain
MRI for me (Of course this is my deductible - all out of my pocket). Guess
what. He had a neuro radiologist read the MRI's and there is no MS!!!!
He can't explain the original mark that started all of this other than maybe
some kind of shadow or something. At least it isn't MS. Thank God I didn't go on that medicine. I think every now and then you have to trust your gut feelings. We talked about my stress level which has been very high for the last 5 years and he thought maybe I should talk to a stress management doctor, which I have no problem with except I have to pay for the MRI's first.
Of course I feel that was money well spent. But you would think that if it
was just stress then I would start to feel a little better. NO! Even the
orthopedic surgeon told me that if he had been told he had MS he probably
would have taken on some of the symptoms. I love him for hisability to step
outside the box and do the tests and also tell me this. My best friend's
daughter has made it her mission to find out what is wrong with me and was
reading the article in Newsweek a few days ago and got so excited about the story on Lyme Disease and how it can be misdiagnosed. She is convinced that this is my problem. Needless to say I never new that the test could say no when in fact the disease may actually be your problem.
I started to look up sights on the internet and was fascinated to see how many of my symptoms are on the list. Icalled an infectious disease doctor
here in Dallas and was told he would only see me if I had been diagnosed
with Lyme Disease and he would only accept the test if it had been sent to a
Doctor Allen Steere in Massachusetts - affiliated with Mass General. The
doctor's name here by the way is Dr. Edward Goodman. I guess what I am
looking for is whether or not you have heard of him and if he is any good or
do you have other recommendations. I thought about going back to my regular doctor for the test but after this long will it come out the same?
As I said before I am desparate to get rid of this problem and maybe get on
some regular insurance when the high risk people drop me. What I don't know is whether the insurance can not take me after having had Lyme if it
turns out to be that. I guess I was intrigued by one of your threads that
talked about a woman who started out just like me with just the left side,
I thought I was the only one with this problem. It is very weird to have a
headache on only one side of your head. If this is Lyme would I need to go
on an intravenous drug or is the doxy good enough? One thing I will say is that either I tolerate pain more than most people or I'm just lucky because
to me it has been very uncomfortable but so far not unbearable
I JUST WANT TO SEE BETTERDAYSFORME! Thanks for your website.





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