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Andersk2

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DX MND
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04/2016
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I guess I am still looking for answers. It seems every Dr. Visit leads to more questions instead if answers. My Dr. Is wonderful and caring, but she has a terrible habit of walking out of the room talking to her self or the nurses and not really explaining to me what's going on. But from what I understand at this point from the conversations with her nurse and my primary Dr. Is that my EMG was inconclusive for ALS but definitely showed progressive muscular disease. My atrophy has progressed from moderate weakness with no detected atrophy in December to significant left sided weakness and left hand, foot, calf, arm, and shoulder atrophy. I have left sided foot drop, fasciculations and hyperflexions. I am getting a repeat EMG on June 10th and am going to Cleveland this Summer. While I continue to drive all my Dr.s nuts with questions and Im starting to fill in my family with little bits and pieces of info just because the limp is hard to miss, what I'm trying to figure out is, why so much pain? Everything I hear says these diseases are not painful yet I have uncontrollable 24 hr. Deep bone/muscle pain. Any suggestions on relieving it?

My Dr. Says we are going to continue to test for Lyme or Myesthenias Gravis or MS even though two years of tests have all been negative. Cleveland says they are testing for MSA. My Aunt dies from MSA, and this looks nothing like it. All I know is that it has to be connected to the myoclonic seizures (they started two years ago).

Anyway, as for the pain, right now, my only relief is intermittent stretching, heat, and essential oils. I love my hot tub, but obviously can't live there. And pain killers are hard to live on when you are trying to have a functional life. So, suggestions??
 

lgelb

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Do you sleep on top of a low voltage heated mattress pad? Or if you sleep hot, prewarm your bed and then turn off the heat.

You might try massage and find an acupuncturist who is familiar with stimulating endorphin release at non-traditional acupuncture points. I have also recently posted a bit on other analgesia options.

If you are going to Cleveland this summer, I'd wait on the next EMG and let them do it.

Best,
Laurie
 

Andersk2

Member
Joined
Apr 4, 2016
Messages
27
Reason
DX MND
Diagnosis
04/2016
Country
Us
State
Oh
Thank you Laura,

I do sleep on a heated blankethrough and my neurologist is working on getting me a referral to a massage therapist so hopefully insurance will help. I will look for an acupuncture specialist although I know of none in this area.

Thanks again, and thank you for this link. Hopefully simple answers with simple solutions will come soon...
 
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