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Slipper

New member
Joined
Dec 14, 2006
Messages
2
Reason
CALS
Country
US
State
Louisiana
City
Ethel
Hi. I'm new to the group. Nice to have a place to go.
Three years ago my sister, now age 60, suffered what seemed to have been a stroke that resulted in slurred speech. The MRI reflected a cluster of irregular blood vessels, thus the stroke diagnosis. It was blamed on diabetes. She lost about 40 pounds and now is very thin. Her "stroke" symptoms have continued to worsen and now she has symptoms of loss of ability to speak, drooling, inability to contain nasal discharge, and now great difficulty in swallowing her food and saliva. She had pneumonia two years ago.
Also over the past year her mental thought processes don't make it to the wording in her daily emails. By that I mean she began to send short emails with a few sentences, each the same as the ones she sent the day before. Once in a while she would address a question I asked via daily email, but not usually. Last month she stopped emailing altogether. When I visit her she seems to have her thoughts together and can write short answers on paper. She just seems to be aimless most of the time.

The swallowing situation prompted her husband to finally bring her in for more tests. Yesterday she was diagnosed with PBP and will begin speech and swallow therapy next week. The neurologist told her husband, "her brain cells are dying". When I read the posts herein, I pretty much think there is no other diagnosis that fits. So there things stand. I'm going to bring her to her therapies and I know enough about the prospects of her future to know the important things that need to be addressed in the near future.

My second thought as I read through these posts is one of self-preservation/fear, a big question mark. Eleven years ago I began experiencing weakness in my legs, and from there my left arm began to weaken. My swallowing was effected and I felt like I had a lump in my throat at times. Food would get stuck. I mostly felt all of this on my left side, as if I was cut in half. I had spasms in my limbs, painful throat spasms. Then one day a tremor set in, with a strange cogwheeling movement. The weakness became rigidity that varied in intensity throughout each day. Nothing showed up on any tests. I had MRI's, a spinal tap, the nerve transmission tests (the ones with the electrical wires), etc. Nothing showed up. (This was repeated 3 years ago - still nothing shows up). Eighteen months into it I was diagnosed with adult-onset generalized dystonia. I take Baclofen, Tranxene (for tremor) and Cogentin (anticholinergic for rigidity). My basal ganglia appears healthy on the MRI, but that is the area of the chemical imbalance between dopamine and acetycholine that is said to be happening. That is supposed to be the reason for the rigidity, spasms and tremor. I have lived a fairly normal life since then with the daily meds. I am very strong and my gait has evened out, the tremor is completely controlled and there are no outward signs of anything physically wrong with me.

After reading the posts and other info pertaining to PBP, I am questioning my own throat spasms and slight stiffness I feel at times when I swallow. I'm 50, only about five years away from the age my sister was when she began having slurred speech. If by chance my own symptoms are due to PBP, would that have shown up on the tests I've already taken, the most recent 3 years ago?

Thank you for your answers that I'm sure will be coming my way. I always enjoyed the dystonia support group, but when I began meeting some of the people in person I really didn't seem to be much like them at all. Their symptoms were much more severe. I guess at this time I would like to keep my dystonia diagnosis and count my own blessings.

Okay. God bless each of you and thanks again.
Slipper
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Hi. Slipper. Welcome to the site. Not great that you have to be here but all in all it is a good forum. You have said it well. Count your blessings. There are people here with a variety of symptoms from one year to many years old with out a 100% diagnosis. As one new member calls it, this "disorder" is probably one of the hardest to diagnose because as yet there is no one test for it. They still exclude everything else and then say it is ALS or PBP or any of the other MND's and then sometimes they are still guessing. A definite answer is a hard thing to find. AL.
 

Gina

Distinguished member
Joined
Nov 1, 2007
Messages
219
Reason
CALS
Diagnosis
04/2004
Country
CA
State
ONTARIO
City
CAMBRIDGE
Hi Slipper ,Im sorry i cannot answer any of your questions,My husband is in the late stages of als and i also have dystonia.You are the first person i have come accross who has it on this site.I am so interested in the treatment you are recieving and forgive me for asking these questions when you are the one looking for answers right now...Do you also have a tremor in your voice and if so do the meds help with that?I hate that especially and will avoid the phone becuase if it is a stranger or someone i dont know they assume that i am older than i actually am or that i am hysterical when dealing with problems.The tremor often effects my whole body and it is very hard to be in social situations.Right now i am only taking clonazepam a low does twice a day but it dosnt really help that much.Again sorry for making this about me but the holliday season is coming up and i will have to do more sociallizing and entertaining and i know that i am so lucky to have this and not als which is so totally devastaing but i do have to talk to lots of professionals and doctors,lawyers,landlord etc b/c my husband cannot do any of these things now....Maybe you would be kind enough to give me some tips on where to start......Thanks Gina...and all the best to your sister!
 
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