SOMA's thread

[Soma]

Hello I am a 38 year old male. My hips/gluteal muscles are shrinking so much that my pants are constantly drooping in the back. I also have a large indentation on the side of my right hip that my Dr. said appears to be muscle atrophy. I feel weakness in my hips as well.

I have also had widespread muscle twitching for about a year, weakness and pain in my right hand, cramping in my calves, and Charley horse pain in my left upper quad.

Has anyone that has been diagnosed with als experienced shrinking hips as an early symptom? Could this and the other symptoms I described add up to possible als?

I know that you all are not doctors but any insight from your experience would be greatly appreciated. Thank you friends.

 

[Atsugi]

Re: Hips shrinking

hips/gluteal muscles are shrinking...Dr. said appears to be muscle atrophy. <> I believe the doctor, for sure.

feel weakness in my hips <> Not a sign of ALS. ALS doesn't "feel" weak.

widespread muscle twitching <> Can be anything, or nothing. Isn't diagnostic.

weakness and pain in my right hand <> ALS doesn't cause pain. The muscle just won't go. There's no feeling associated with it.

Charley horse pain in my left upper quad <> Pick one, hand or leg. We don't see the beginning of new onset ALS striking all over the body.

shrinking hips as an early symptom <> I can't say. Never heard of it, though.

Could ...symptoms I described add up to possible als? <> I doubt it very seriously.

Continue to work with your doctor to fix this, but I really doubt it has anything to do with ALS.

 

[Soma]

Stress Causing ALS?

Did anyone who is diagnosed with ALS have a very intense period of stress before the onset of symptoms? I had several years of intense stress before an onset of symptoms which my neurologist is saying is possible ALS. I have read several medical journals that suggest the possibility of severe stress for a 3-5 year period as a precursor to the onset of ALS. An example some give to support this theory is the increase of ALS amongst those who served in the Gulf War. Does anyone else here think that severe stress may have been a contributing factor to them developing ALS?

 

[Atsugi]

Some of us have asked that question before. I did, too. But no researcher that I've read has ever supported the idea. Could you share your sources, please?

 

[Soma]

Here is one example:

Monsores, N., Oster, C., Pagnini, F., et al. (2013 – present). Stress, trauma, and psychological factors in amyotrophic lateral sclerosis: an epidemiological study of the Brazilian ALS population. Dr. Craig has connected with another ALS survivor, living in Brazil, who surveyed over 1,400 Brazilians with ALS regarding psychological trauma and intense distress prior to developing ALS. Survey results were consistent with Dr. Craig’s theory that psychological stress and trauma, in combination with environmental, genetic and other variables, play a significant role in the etiology of ALS.

Dr. Gabor Mate is another supporter of the mindbody principle suggesting that stress is the most likely underlying cause of ALS and some other diseases.

 

[Nikki J]

These are not peer reviewed published research. These are people with an agenda. Certainly some PALS have had severe stress prior to diagnosis. Others have not. Most people with severe stress do not get ALS.
Gulf war vets certainly have a high incidence of issues. We do not know why. Most people lean toward a theory of toxic exposures as a trigger rather than pure psychological stress

 

[Atsugi]

Could not find the paper.

That group, Craig, Oster, and Mate credit detox, good diet, and good attitude for stopping ALS ( they stay away from using the word "cure").

I'm skeptical.

 

[Soma]

Clean EMG, Later Diagnosed ALS?

Did anyone who has been diagnosed with ALS initially have a normal EMG? If so, how long did the diagnosis come after the normal emg? I had a normal emg but my neuro said she could not rule out ALS due to atrophy, fasciculations, and weakness found upon examination.

 

[KimT]

Re: Clean EMG, Later Diagnosed ALS?

Is your doctor a neuromuscular specialist?

I had a dirty EMG long before my official diagnosis.

 

[Soma]

Re: Clean EMG, Later Diagnosed ALS?

So sorry to hear about your diagnosis. Yes she is a neuro at a major ALS Clinic. Going through the possible diagnosis process has been quite strenuous.

 

[Atsugi]

SOMA, I merged your three open threads so that the whole history is easily available. Please only use one thread.