reality bites

[Kerbear]

It is time for me to move from do I have als/mnd to another forum however I do not have a specific diagnosis as of yet, to explain which I am confident most or all of you will understand my 4 emg's and clinical exam cannot be denied.

I went in November 18 th for a fourth emg it is always an adventure, this time I had to soak my hands and feet in hot water before the testing began, the attending brought three fellows in the room so at that point there were five of us in the room. After about 20 minutes of testing she patted my shoulder and said that they didn't need to go any further and asked if I was still willing to the muscle biopsy.

I agreed because it is for further confirmation and research and the only way we will ever have a cure is to participate, well at least I feel that way.

With that being said they and I are leaning towards pls, except that I am beginning to show both umn and lmn signs, I had not ever thought I could have als because I thought by 3 years I would certainly be far worse off.

I still don't know what to think and say or do but I can tell you all I have learned a lot from browsing this forum, I have been baffled, saddened, encouraged, frightened, and sometimes amused at what I see. Mainly I find courage and because I often feel very alone, although I have an amazing support/care system, it is very lonely when even those who help button your buttons can not even comprehend what it feels like to become this dependent on others.

I had never been part of a forum or support group so this is all new and I will have to learn how it works. Thanks to everyone who has helped me so far... My cup runneth over

 

[Atsugi]

Glad to see you're getting the support you need.

 

[lgelb]

You say "they and I" are "leaning toward PLS." What did they actually tell you? What was coded on the discharge sheet? If they wanted to do a muscle bx, there must be a reason. What are they looking to confirm/rule out?

 

[Kerbear]

They cancelled the muscle biopsy when I went to the clinic and had the last emg on 11/18/15. I just wanted to let the people who helped me through the last several months on here that the clinic finally diagnosed me. I am having cognitive problems so I won't post anymore and have told my husband about the support for caregivers. I seem to confuse you people and don't mean to. Plus we are making the most of this holiday and have family and friends coming and going from all over the usa ... I have another appt Monday they are just doing blood work for some genetic testing. God bless

 

[Kerbear]

What do you mean coded, all I left with is paperwork for ssi/ssdi

 

[Nikki J]

There are diagnosis codes somewhere in the system. you may never see them. They are not even in my progress notes. The only time I see one is on my orders for labs etc. but some medical records systems it is in the assessment part of the progress note.

 

[Kerbear]

Oh okay I may be able to see that on the patient portal, and thought maybe it was super important so I was going to add it to my list of questions. My mom reread my first post here and said it is a bit confusing, so I apologize for thay .


So to clarify and I am getting help with this, in I had my first emg one year ago today it was only on my arms it came back, polyphasic units, cards and fibrilatiins that indicated primary muscle disorder so I was referred to a neurologist, didn't get in until March the exam showed clinical weakness in upper and lower extremities so that Dr did another emg himself it showed same as before but he did legs arms back of neck and hands he said I needed to go to Emory that referral said to rule out myositosis that the emg showed reduced recruitment in all but one muscle tested, and non myopathic polyphasic units, crds and fibrillations. Fast forward to my appt there that Dr confirmed clinical weakness, brisk reflexes, babinski, and ordered 22 blood tests, a comprehensive emg to rule out mg had already had negative blood tests, I had a 3 hour emg/ncs, we were told that day it was not cramp fascillation syndrome, mg or myopathic but was abnormal had muscle membrane instability he would confer with the team and I was to keep my appts, continue to stop smoking and I also say a Dr that day that put me on baclofen, and levsin.

I went in sept 19th to hear results and was told that they had my previous records but were still reviewing ... But so far for the first 2 yrs I had clinical evidence of pls but the emgs and their clinical exam now show both umn and lmn involvement ... They asked if I would be willing to do a muscle biopsy didn't say why but that it would be deep muscle so I agreed, I went November 18 for that to find out the muscle biopsy was cancelled and amother emg was ordered in which I soaked my hands and feet in hot water ... My husband said to get my temp up. It was 20 mins or so with some interns observing.

That's all I can say except I tune out a lot because I am having trouble processing this, and have cognition problems that I have only just acknowledged I also cry for no apparent reason.

To clarify the family part, I was estranged from my fathers side because of some abuse so I did not know exactly what my grandmother and her mother had and this was in the 50's and 80's respectively. Both died of respiratory failure paralyzed but aware, my cousin and I have been getting closer and has worked hard to get me some answers I have one first cousin in a similar boat as me at the univ of mi clinic. So now I will have genetic testing Monday.

Hope this clarifies what I have tried to express since I joined my only real question is ... Is anyone who is my age 41 or so with a diagnosis, a good sense of humor, and doesn't want to question my situation want to chat it up if so that would be great.

I have decided to live the b