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Moonmark

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Hi, again,

I went back to the neurologist today to go over all the test results. As I reported earlier, both the EMG and NCV tests were normal, which, he said, indicates that I do not have ALS, peripheral neuropathy, radiculopathy, or a myopathy. When I asked him for greater clarification about ALS, he said that the symptoms I am having and the EMG results indicate that I "do not have ALS at this time." he said it does not mean that I could not possibly develop it "down the road" but said I do not have it at this time. what the heck does that mean?! are they required to say that or something?

My CK level was normal, as was the cervical spine MRI and the evoked potential test. The brain MRI shows several small white matter hyperintensities, which the radiologist indicated on his report could be indicative of MS, vasculitis, Lyme disease, drug toxicity, or other conditions. The neuro does not believe those lesions are consistent with MS and declined to order a lumbar puncture. He said there is a slight swelling of my left optic nerve, but is not sure whether that is just a normal anatomical variation for me. He also does not want to do a muscle biopsy because the CK level was not elevated and said he does not think a full spine MRI is necessary. He does not want to do any more testing at this time, but said he wants to do "watchful waiting" and have me return if symptoms worsen, and in any event, in 6 months. When I asked him about what appears to be atrophy in my hand/wrist area, he said he does not know what my limbs looked like previously, but agreed they are thin in comparison to other parts of my body. He did the pushing-pulling tests and said he does not think I am"pathologically" weak. (I can't hold a pen for the duration of an interview-- I am a freelance reporter/writer, but what the heck?) Basically, he said "it is possible" that I have a neurological disorder, but he cannot determine what it is at this time and said many diseases need to worsen before they can become more apparent. he said it is also possible that I had a virus that affected my nervous system.

Meanwhile, over the holiday weekend, I was unable to take a walk on the beach. I tried, but could not get very far before my right leg and hip weakened and I had pain running down the leg. I also have developed some kind of blocked ear thing in the left ear and when I swallow and my ear makes popping and crunching sounds. not sure if this is related to any of the other symptoms I have had, which I will not trouble you with by repeating.

just wondering: where would you go from here? another doctor? a different kind of doctor? wait to see if things get worse or better? I am thrilled to hear that this is not ALS, but very disappointed to have no explanation for my muscle weakness and other problems.

thanks--

Sandra
 
Yes, they are required to say that, at least in Germany. So you don't have ALS.
My doctor said: "For the transcript I say you: you do not have ALS at this time." "In private I can say you: you don't have ALS."

Tim
 
Hey Sandra, congratulations on being cleared of ALS, and welcome to the club of "watchful waiting". It is very very frustrating to not be able to label what is happening to you, especially when your way of life is impacted negatively. My life now is so different from a year ago, and drastically different than 2 years ago. You will hear that same story from many of us in limbo. We make the adjustments we need to make in order to get by with our new and sometimes worsening complaints/issues. I believe it was Brendapals who coined the term "the new normal". I know now to pencil in recovery time for any activity that involves walking, to not bother with sewing, to crawl instead of getting up and down in the garden, etc etc. We make do while we catalog our symptoms hoping for the one that breaks the case. We go for our follow-ups (mine are every 3 for neuro and every 2 for GP) and at least in my case, try not to get my hopes up that this visit will be "the one" that makes everything clear. I hate that this is what is in store for you, but honestly, when you compare it to an ALS diagnosed....it's a no brainer and you will be able to bear the waiting. BethU posted a quote at one time that said the longer it takes to get a diagnosed the less likely the diagnosed will impact your life expectancy (hope I got that right). I wish you no worsening of symptoms while you sort this out, and hope it is a virus that just has to work its way out-

Take care,

Lydia
 
Sandra

I got/get the ear thing. I cant believe someone else said it! I have had this on and off for 2 yrs and it is not an ear infection. I have even be to the ent for it, and they see nothing. It usually just goes away on its own. I also have the white lesions on my brain. I was told 10 yrs ago it was MS by a neuro because of the report but when I went to top MS specialist, he said they were not MS lesions. Go figure. I had a repeat Mri of brain Last year (10yrs later) and they had not changed that much. Who knows! Have you been tested for Lyme? I didnt know it showed up like that in mri.

You have sx and the EMG didnt pick them up, so that is good news. I assume that your clinical's were good. The 'wait and watch' is hard but thats what I do, and Its better than the alternative. SO, go with it and make adjustments that you need to.

take care
april
 
well Sandra u should not be concerned bout having MND as ur EMG/NCV are normal along with cervical spine MRI and the evoked potential test...so whatever it is that u have this atrophy from is not suggestive of MND as u wrote in ur post that u dont feel the weakness(holding pen...)....and answers to that can only be provided by ur doc(if they have any at this point in time)...as for that quote of his regarding u developing it "down the road"...its their job as in medical profession they NEVER SAY NEVER.....so dont worry its with everybody....its like them saying u dont have a bad tooth today but i can not guarantee if it wont be there 10 or for that matter 20 years down the lane!
 
Neurological illness

Your neurological symptoms are compatible with Lyme Disease of the Central Nervous System (CNS).

Your MRI is characteristic of Lyme lesions in the brain
.
You live in an endemic Lyme area.

If you have CNS Lyme the prognosis is better if the treatment is not delayed.
" Watchful waiting " is not advised
.
Your next step is to be tested for Lyme Disease.
The standard screening test is the ELISA. The ELISA will be falsely negative up to 50% of the time - it is totally unreliable and should not be done. The WESTERN BLOT is much more reliable and more specific.

Testing should be in a very good lab. In your area the most reliable lab is at Stony Brook, N.Y.

Interpreting the Western Blot can be tricky and the physician should be experienced- especially if they report it as " questionable".

When they give you the results ask for the specific BANDS that are positive rather than simply a "positive or negative " answer.
 
Hi Dralmiller,

I did have the ELISA test for Lyme disease, which was negative. I was not aware that there was a 50 percent error possibility, though. Are you an expert on Lyme disease of some sort? I have to say, I am sitting here, a bit depressed. Not because I apparently do not have a neuromuscular disease (quite happy about that), but because I have some peculiar illness that is interfering with my life in a significant way and limiting my physical activity, but have absolutely no answers from the neurologist. I did not think to discuss this further with him, as my initial Lyme test by GP was negative. I have wondered about this, however, as I am a hiker and I have spent a lot of time in the woods in Western Massachusetts and I have two dogs that I frequently pluck ticks from, despite the use of Frontline. Is there a Lyme specialist in my area that I could see? Before this all happened, I really did not go to the doctor much and I do not have a longstanding relationship with my current GP. I have only actually seen her once before I was referred to a neuro.

I was just sitting here looking at pictures of myself from a year ago with my daughter and my forearms and hands look significantly different. I was not aware that muscle atrophy is a symptom of Lyme disease.

anyway, thanks for your post and any additional guidance you can provide,

Sandra
 
Neurological disease

Lou Gerhig played baseball at the Yankee farm team in Hartford Ct.( 50 miles from

Lyme,Ct.). Later he had a weekend home in Lyme,CT.

The same TICK that carries Lyme Disease also carries co-infections.

Specifically Babesia,Erlichia, and Bartonella.

All of the co-infections and Lyme are very common in your area. As an outdoor person-hiker you very likely have been exposed.

I strongly advise you to read a new book "Cure Unknown". Available at Amazon or Borders-

it is factual and very enlightening. You will be better able to understand your condition and guide you to a solution.

For a Lyme literate physician in your area go to the Web Site ILADS.

Good Luck.
 
dralmiller, very interested in your repsonse, will be checking out, the website you listed, I have tested positive for Lyme, but my GP and Rheumy are disagreeing as to wether it is an active case(Crhronic Lyme) I have taken 2 rounds of doxy, but still do dot feel well, I think I need to go to a specialist in this field. I KNOW I was bit by a tick, had the classic bulls eye rash and tested positive twice. I live in Indiana, and have been trying to find a Lyme specialist in my area, thanks Margaret, I am also not diagnosed
 
Don't delay

You history is classic.

Two rounds of Doxy is often not adequate.

Please don't delay.
 
Congratulations on being cleared of ALS!

Zaphoon
 
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