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Lyme Disease Message Board


Lyme Disease Board Index


Dear Ohio Hunter,

By now you have probably read my last message to Ticker and my plans
to see Dr. Kussman in Dallas. The nurse had told me about the patient
they had with ALS and Lyme and I thought it was interesting that you
made the comment about Lou Gehrig being undiagnosed with Lyme
disease. The nurse at Dr. Kussman's office told me that their ALS patient
is also seeing a homeopathic doctor in Pennsylvania and he believes that
he developed the ALS from the Lyme disease. They aren't completely
buying into this if at all but I think it very interesting that another person
has the same thoughts as you on this subject. Has any doctor led you
to believe this may be the case? I haven't met this young man but if I do
I'll let you know what his homeopathic doctor has to say in more detail. I
actually worried at one point if my problem was ALS but if the neuro did any
tests for this I wasn't aware of them. It is so hard to figure out the problem too because so may diseases have the same symptoms. Mine started out just on my left side with the stiffness in my neck and hand and after the massive amounts of steroids they gave me it seems to be bothering me everywhere on both sides. I was so energetic and now I have no stamina, can't sleep, both hands are stiff and tingly and sometimes I feel like I won't make it to my car after I do grocery shopping because my legs are so weak. My legs get restless and that's like ALS but I guess I would have every disease known to man if all I looked at were symptoms.I have been told it is a form of MS
but I don't know that for a fact. In fact, I didn't know anything about MS until I was possibly faced with it. I loved the orthopedic surgeon I went to because he was willing to check out with MRI's if there were actually any spots on my brain or cervical area, even though this wasn't his expertise.
Something about my problems just didn't gel with MS he said. And then when he said it wasn't MS he wondered if it could be stress because he said if he had been diagnosed with MS he would have probably taken on the symptoms of MS whether he had the disease or not because the thought had been planted in his brain and I had been told this for 3 1/2 years. That's a long time to convince yourself you actually have the problem! I'm sure that only sleeping about 4-5 hours a night is not helping. That probably creates some of the equilibrium problem. But I can't sleep during the day either because my arm and hand hurt worse when I lie down during the day (not at night) so it just isn't worth it. Actually I don't know how I'm functioning on so little sleep.But I know it isn't just stress, although there is a lot of that, because you would have thought I would start getting better when I got the good news. But seriously, I even was thinking ALS even after he told me no MS. I guess you just have to convince yourself that the neuro was wrong and go on from there
no matter how long it takes. I even saw an ad in the newspaper at one point in time for a trial for a new drug and I almost called the MS specialist to get in the trial because I can't afford the drugs on my own. What a mistake that would have been! How long have you had your problems and do you think the Lyme came first? If so, I think you have a valid point on
the cause. Are you being treated for the Lyme disease and if so are you getting any better? What are they doing for the ALS? Do you think they will reverse the diagnosis on the ALS if they see improvement? Do the doctors see a correlation? I swear they have funnel
vision when it comes to their specialty. I'm not saying my doctors wanted it to be MS but they just couldn't be bothered to think that it might be something else. I haven't even called the neuro to tell him that the spots
he saw are not even there and the orthopedic surgeon thought they might
just be a shadow on the film. He said the MRI 's were not the best quality. What do you do - you grow up trusting your doctor to always do the right thing for the patient! Enough griping for now!
I hope that somebody is giving you some encouragement. Does anyone believe (doctors) that it might just be Lyme and not ALS? What are they basing their diagnosis on at this point? I will definitely keep you in my prayers
and hope you will have a turnaround. Keep me posted. I CARE!!! We all
have to hang together and support one another. And hope for a cure.
Keep your spirits up, I know that plays a part in all of this.

BETTERDAYSFORME





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