Just diagonsed with PMA but that forum is inactive

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jb63

Distinguished member
Joined
Dec 13, 2011
Messages
164
Diagnosis
12/2011
Country
US
State
NY
City
Long Island
I would like to hear from others with this disease. I am in need of hopeful or positive input. I know this may be reaching to far. I know what I am facing and I am devastated. I am trying to hold it together for the sake of my husband who is in tears. I am 63 married with my only son at home with mild cp.

I received this diagnosed from a neuro doc with a good reputation who I went to see after the neuromuscular doc would not see me until my appt in Jan. This was after I called her in Oct. and told her I was only able to walk a few steps with my walker and it was very difficult. She has been following me since last April and told me I had motor neuopathy, each visit I was told I had "nothing to worry about," I did not have ALS, and and that I had no progression. I have a flaccid rt leg, bilateral footdrop, and leg weakness with atophy. I wonder what she meant by no progression? That it remained in my legs?

New doc got all my records and did an EMG. I saw him twice and he seems certain. In my favor now: Arms are neg but slightly weak, no face involvement. Prescribed Ritulek.

I still plan on seeing the neuromuscular doc in Jan. At this point I have nothing to lose.
 
I meant to say I received the PMA diagnosis, NOT ALS. Sorry I am nervous.
 
Hello, and a big big welcome to this forum, I am so sorry about your diagnosis. There are lots of lovely knowledgable people here. Pma has the same issues as ALS so you are in the right place. It's much rarer which could be why the subgroup is not so active.
 
Welcome aboard Jb
 
Welcome to the forum. 8)

I agree it would be good to go ahead with your appointment in January. If your diagnosis was not absolutely clear cut, the more options, the better.

Take heart that PMA generally progresses much slower than ALS. I have started to wonder if my diagnosis will eventually change to that. My upper motor involvement is very slight.

Don't be concerned about what forum you post on, those with PBP and PMA usually post on both the PALS and general discussion board.

Of the subsets of MND here on this forum, the only board that is especially active is the PLS one.
 
jb63, welcome to the forum...

I would also go to the appt. just for peace of mind if nothing else. From what I recall, PMA is usually just the lower motor neuron signs, so you wouldn't have hyper reflexes, etc. My version of ALS is mostly like PMA I think, it's been very slow going for me. Check into clinical trials if you qualify, and most of all, remember to live your life. Can't walk right? Get a scooter. Stairs have now become evil things that were invented by a sadist? Get a chair to go up them. Reach out to the MDA and ALSA organizations for help with equipment that you will be needing. And if you are a vet, contact the VA.

This forum is a lifeline to me and I'm sure it will be to you as well. Have a good holiday season!
 
Hi everyone. I was diagnosed with PMA August 2011. I have had this disease since 2003. I no longer walk. use a wheel chair or scooter to get around. Have a care taker 7 days a week, paid by medicaid since I can no longer take care of my self. I live alone but have plenty of support. I saw a second opinion in Houston and was told the same thing, PMA eventually leading to ALS. The doctor (Neuro- specialist) stated to me that eventually this disease makes the same progression of ALS. I may have 2 years according to this doctor. I have plenty of disabilities today. No balance, I choke at nite some and I am using a VPAP. get sick of my stomach after eating at times. Can not sleep and sleep all day the next day. I have a lot of pain in my lower legs, have had water therapy which I enjoyed a lot will join the YMCA this coming year to continue to relax that way- Medicare no longer covers it this year so I am going to the YMCA. I noticed I have pain in arms and elbows . had surgery on both hands which helped. I get numbness in my mouth and at times at my face. I am strong in my arms still but they hurt if I workout. I was told both of my ankles are already paralyzed. I am 52 years old and enjoyed dancing, still do in my living room while ridding my chair. I have had treatments since 2003 with a local neurologist, second opinions for my my back pain. Services for 3 years at Mayo clinic. 2 years of services with shands Neurology and finally received this diagnosis. I now reside in Texas where I connected with the ALS Clinic in San Antonio. Have primary physician in Austin and I am waiting to connect with a case worker from the ALS Clinic. I have hope that I will live a little longer I enjoy life and my family. I am trying very hard not to think about this disease. Sorry if too long.
 
Thank you for all your input. Never too long. I live in a ranch house and have a portable ramp I take with me if I want to visit friends with stairs. Also a portable toilet seat and a stool. I don't travel light

Question:
Back in the beginning of October neuro doc #1 put me on prednisone of 12 days as I was in agony with lower back pain. Shortly after I completed the dose, I was able to bend (not just move) 4 toes on my rt foot (rt side is severely affected) and my calf muscles increased in stength when contracted and I had regained a bit of muscle mass. My ham strings got much stronger. This lasted about a week or so until I got whacked with bedrest with a blood clot. Plus prednisone was not continued.

Is this a bit atypical for PMA? I thought once it is gone with PMA it is gone forever. I asked doc #2 about it twice and he said he did not know why that happened. Doc #1 does not know about this I see her in 3 weeks. Her diagnosis for me is motor neuropathy. She is a neuromuscular doc.
 
I worry about every little thing that goes on in my body. Honestly, passing gas gets analyzed.

My hematologist is working me up for hypercoagulation because my clot occluded all the deep veins. Did not come from sitting to long or other common causes. He thinks this all may be connected with the neuro problems. He also told me to get another neuro opinion.

Thank you all for answering. I am trying to stay in the moment.
 
YES! That could most definitely mean something. (improvement from prednisone) here is why:
https://www.alsforums.com/forum/do-i-have-als-als/17294-advice-please.html

If you read my little dissertation on prednisone in the above link, this should be of encouragement to you. I remember the 'guru' rheumatologist who wanted to try the radical dose of prednisone said to me that if I responded at all, no matter what the name attached to my illness, that it was treatable, and that if I did not respond, in his opinion, it was not—simple as that.

Were MMN and CIDP considered?
 
Thank you Rose for the encouraging information.

Initially I was told it was CIDP related to multiple cases of herpes zoster (got stronger after 2 weeks of valtrex). Then test were neg. I asked about MMN but my blood work was neg. I understand between 30 to 50% are seronegative. My spinal fluid was negative as well. I was told that it could become postive somewhere down the line. At this point I cannot see why a trial of pred can't be done.
 
Are you out on Long Island? The rheumatologist I saw is located in Manhattan. I will try to remember his name (its up there somewhere lol) and send you a message with it.

I can't stress enough to be proactive in making sure you have a correct diagnosis. If its PMA, then so be it, but if you have a treatable condition, then, what a waste to not find out, and have the chance of getting better, or at least not getting any worse.
 
Much appreciated, Rose.
 
Its on your profile page as a visitor message.
 
My husband was a diagnostic enigma for a long while and now is diagnosed with CIDP--MADSAM. He had a query of PMA by one specialist and ALS by another. Eventually he was seen at a neuromuscular disorder clinic and was given a trial of IVIG which he had good response too and has been on that since 2007. Dr. Carol Koski in Baltimore is supposed to be excellent in diagnosing CIDP, but the real guru for CIDP is Dr.PJ Dyck in Minnesota. These diseases are often very hard to narrow down. My husband was followed by one neurologist for about 3 years who said he had carpal tunnel and said his emg and nerve conduction testing was fine. I gather the testing is critical and some neurologists aren't as good at administering EMG's and nerve conduction tests. The neuromuscular clinic picked up demyelination on the first appointment versus the 3 years of nothing at the first neurologist. I think hubby's original neurologist had very antiquated equipment. Your response to prednisone is an optimistic sign. If it was MMN, the prednisone would likely make you worse. Lots of CIDP patients do have good response to prednisone. Good luck.
Laurel
 
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