Bigshawn’s thread

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Bigshawn44

Member
Joined
Jan 9, 2020
Messages
17
Reason
DX MND
Diagnosis
12/2019
Country
US
State
PA
City
Markleton
To be clear, Shawn, the muscle biopsy would not be diagnostic (though it could be suggestive) for PMA, which is a motor neuron, not a muscle disease. I trust also that you had a second opinion after the PMA diagnosis. While your dx is not the topic of this thread, we also like to be precise for those not yet diagnosed.

Also, the advice in MND is not to exercise to exhaustion, as the motor neurons that have not yet died, only have so much "current" left.

Best,
Laurie
Thanks for the input Laurie. They have diagnosed me PMA but I have not had much luck getting any input on how to deal with PMA or how to preserve myself and still maintain somewhat normal lifestyle. I work Construction remodeling homes and after a low key day which normally would be a easy day followed up by a gym session. I’m left after work not recovering for a day and a half and no gym at all.
 
Neither ofyou have seniority to private message the other. If Shawn initiates it you may visitor message. ( those undiagnosed are otherwise not allowed to messaged the diagnosed)

shawn you said elsewhere you have cardiac issues including aortic stenosis and other health problems. The dizziness seems likely to stem from something other than mnd. Hoping, as Laurie said, that you have had 2 neuromuscular specialist opinion. Everyone should and if you have other medical issues as stated it is even more important
I have had 3 opinions and 1 opinion was ALS and the other diagnosed me officially PMA and the 3rd just wanted to wait to see how I progess over the next year. The 3rd one is a dr that didn’t exam me but as soon as she came in the room looked at me and said your too muscular your fine you have nothing to worry about. Lol. The first 2 I have been seeing for a year and have declined a lot in all areas even losing 20lbs in last few months. The heart issue is from radiation damage I had when I had stage 4 hodgekins lymphoma. They believe that the radiation damage part of the heart.

Mine started in the legs and continued to progress into upper body with the constant twitching. The upper body u can’t see twitch as much as the lower body but I can feel it and the EMG shows it. Over last 6 months my cardio conditioning has declined and I get dizzy when doing cardio. I also can’t perform much strenuous weight lifting due to lack of energy and it takes me a day to recover after each workout. I had a muscle biopsy done recently and found that I have PMA progressive muscle atrophy. Unfortunately in the last 2 months I have found it has started to affect my lung muscles and throat muscles.
 
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Hi Shawn and welcome here.
PMA is a pure lower motor neuron disease. Many people initially diagnosed as PMA eventually develop upper motor neuron signs and are reclassified as ALS.

I hope your progression is slow. Did your neurologist arrange for you to attend an ALS clinic?
Ask lots of questions. We’ll try to support you as best we can.
 
Hi Shawn and welcome here.
PMA is a pure lower motor neuron disease. Many people initially diagnosed as PMA eventually develop upper motor neuron signs and are reclassified as ALS.

I hope your progression is slow. Did your neurologist arrange for you to attend an ALS clinic?
Ask lots of questions. We’ll try to support you as best we can.
No she has not arranged that. I have the head dr at the ALS institute in Morgantown Wv. She has been an awesome dr but is very busy. I been trying to find out more on my own to know what to do and not to do. Thank you for helping and chatting with me. I believe I have developed upper motor neuron symptoms but have not seen her since and go back in April. Things have progressed fast in last 2 months and I’m praying it slows down. I’m so glad I found this site and thankful for all of you for helping.
 
if you are seeing the doctor who runs the clinic then you should be able to see other people when you are there seeing your doctor.

ALS clinics seem to have 2 different approaches. Some have you make an appointment and you see your doctor and also the various other specialties see you ( PT, OT, respiratory etc) every visit

the other approach -that my clinic uses is I have an appointment with my doctor and only see other people if she or I think it necessary. So I might see PT because I have leg weakness but not speech or respiratory because those areas are ok.

if you only had an initial consult those things likely did not happen but probably will next time in whatever model they use
 
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