Another Question?

[KANSASTOM]

Thanks for answering all of my questions, I don't want to bother you guys too much.
I am very confused about the letter the neurologists wrote to my PCP. The neurolgist told me I had ALS and that he didn't have a crystal ball and I need to go the MDA clinic. By the way the MDA clinic cancelled my appt. and rescheduled for Sept 26. In the letter to my PCP he said I had lower motor neuron signs but no upper motor nueron involvement. Why would he tell me I had ALS? He also said, "I had it all over" and what he meant by that is I had positive sharp waves and fibrillation potentials in all my muscles. I still have no weakness and the atrophy in my calf is a year and a half old now. I still am confused how my emg results point to ALS, doesn't these results point to widespread denervation which could still be a some sort of neuropathy. I am too the point of doing nothing anymore on searching for what is wrong with me, would it be wrong to just let time tell or am I at risk of letting something treatable getting worse? I still think this is a hereditary motor neuropathy because of I suspect my grandfather and my father have something similar.
I know alot of questions but not knowing the answers has always bothered me. Thanks for any input.

 

[olly]

if you have no umn involvement/symptoms your neuro can not diagnosed you with als.
sometimes it can take a bit longer for some for the umn symptoms to show,until then you should not be told it is als.
it could be neuropathy but i think that is more focal not in all muscles.
it could be hereditory from what your saying.
there is the possibility of pma or sma.
you should keep your appointment with the mnd clinic,they will be able to tell you for sure if it is any type of mnd.
take good care.
caroline:-D

 

[awieleba]

keep your appt.
but I do think that what you have is hereditary. Your father and grandpa had what is similiar to you. The 'good' news is your dad is still here, is he functional? and you have some atrophy with NO weakness for over year.

I think there may be alot of variants of muscle disease that even docters are not sure of. Alot of people like our parents or grandparents did not have the internet or all the info that we hve so they may not of known or questioned what they where told.

Good luck and I would not stop advocating for yourself unless it is consuming you where you are not having a good quality of life.

april

 

[KANSASTOM]

April,
It has been almost 4 and a half months since I was told I had ALS. In the beginning I let this consume my life, constantly reading and worrying about my diagnosis. On one hand it was good because I have learned alot and on the other I have wasted too much time. I am now too the point where I don't care anymore I am going to live my life and let time reveal the nature of whatever disease I have. I will keep my appt with the MDA clinic but I don't expect much will come from it. My father still walks (with a cane) and drives but has lost a lot of function with his hands, and I am okay with that if that is my destiny.

 

[awieleba]

yes, I would be ok with that too. All we can do is live our life and if we have a moment and need some chatting or venting on it, then we can come here.

I wish you well, I really would hold on to the fact that this seems in your 'genes'.

best wishes,

april