first neuro visit

[vmd]

After seeing the local neuro for the first time, I was very disappointed in his lack of knowledge about ALS. He did a few strength exercises and will conduct an EMG next week, but he did not impress me. For example, he said that hypereflexes are more common in als than weakened reflexes. Having read about upper and lower motor neuron areas, I know both are part of the diagnosis.

In addition, he did not share his examination findings with me. I suspect he is concerned because of my set of symptoms, but he does not want me to worry.

Of course, he said he thought that the probability I had als was very low, but that is something we have all heard before.

After reading about the complexity of an als diagnosis, I wonder how many tests I will want done. If a normal EMG is not necessarily indicative of later als, then one wonders about the practicality of having repeated tests done. Why not just wait until the diagnosis becomes apparent. I suspect if I have als, I will eventually know it because I will experience progression of symptoms. If one looks at the Escorial criteria, both the original and revised versions, for a definitive diagnosis of ALS one must have both UM and LM symptoms in 3 regions. But by then, I will certainly know I have als. I won't need a doctor to tell me. The only advantage I can see of diagnostic testing is to eliminate other possibilities, but these are not always definitive either.

I guess the question I am asking is what is the disadvantage of not doing excessive testing, even by an als expert, and allow the condition just to manifest itself?

 

[ltr]

My personal opinion is that by finding the diagnosis you eliminate diseases that may be treatable. Some diseases, such as Lyme, can be treated, but the longer you wait, the more permanent damage that occurs. You don't want that. I feel it is important to rule everything out, just in case there is treatment. Don't give up investigating what is making you ill. You are your own best advocate and if there is a chance that it is not als, then find out what it is. Don't be discouraged by docs that seem uncaring or unknowledgeable, we all have had them on this forum. As long as you have the capability and there are blood tests, EMG/NCV's, MRI's, etc. get them and try to help yourself. God gave us the knowledge and power for a reason. You can go on and live your life happily while you are being worked up for your illness. Help yourself to get better. If it turns out to be als, then you will have the knowledge to make plans. Good luck. Leslie

 

[Al]

vmd. One thing about getting an early diagnosis is that if you choose to take Rilutek it is more effective when taken early on in the disease. If you need assistive devices or equipment the ALSA or MDA probably won't help unless you get referred by a doctor or Therapist of some sort.
AL.

 

[Peg B]

Reason for DX

Dear vmd.

I agree the need to know DX is important for purposes of treatment where possible. About 3 years ago I started symptoms. When I asked the neuro if MS or ALS was a possibility she said NO. Another neuo basically ignored me. October 31 2006 after going to a hand surgeon for atrophy of my finger and hand weakness he sent me to third neuro who told me I had ALS for sure. I liked that he did not see the need to "spare me" and was very straight with his DX and he was visibly angry about the first two neuros.

He sent me on to U of M ALS clinic and I had the tests EMG and nerve conduction for a fourth time. (The doctors were knowledgeble, kind, and supportive but straight.) EMG was abnormal for 3 limbs, finger atrophy, weakness right hand spreading to left, leg weakness, fastiulations, cramps and one borderline conduction block. But no sign of upper neuron, so I am DX with either Multifocal Motor Neuropathy (MMN) or "Atypical ALS." The advantage is I am getting treatment for MMN which is IVIG. My symptoms improved a bit - I can move my finger a bit, and type but I cannot write much but I have more energy and I am not worse. They say that the symptoms will show themselves eventually and one of the DX will stand but in the meantime I am living pretty well and feel better. So I think it is a good idea to go through the tests - I don't find them bad or hard- and you may, as Al said get the ALS meds to help or some other DX that is treatable. Let us know how it goes. Best Wishes, Peg

 

[vmd]

Thank you to all of you who responded to my concerns.

I suppose it is human nature to not want to be the bearer of bad news and neuros are no different. Heck, I feel bad when I have to tell one of my students they failed a test, even when they earned the failing grade!:?:

Your comments make me think that I should consider further testing, but I am not certain as to the extent of the testing. I will certainly have the EMGs, which hopefully will shed some light on the problem. As you know, I am solely responsible for the financial support of my daughter and in the back of my mind I think that if I do have ALS, I will need to save as much money as I can for her. Medical testing can be very expensive.

Like you, Peg, I probably have had symptoms for about 3 years, although I never seriously worried much about ALS because I had not experienced the muscular weakness. Perhaps I had some minor weakness on my right side, but it was not as apparent as it has become in the last two months.

I suppose for now I will pray and wait.