ALS or not? Concerned Caregiver

Status
Not open for further replies.

Dgirl72

New member
Joined
Jun 5, 2022
Messages
1
Reason
CALS
Diagnosis
05/2022
Country
US
State
PA
City
Bedford
Hi - I am the caregiver for my husband Mike - who is the last 6 months has gone down hill to places I would never have imagined. In December 2021 he starting losing the feeling in his feet. He had the pins and sensation. He continued to get worse and went to see his PCP on 2/4/2022 - the PCP sent him to emergency room for admittance because he thought my husband had MS. Over the next 4 months he was in one hospital or another.
7 days in first hospital with a round of IVIG - thought he had Guillain Barre.
4 days in rehab
3.5 in next hospital where he was tested/Treated for MS, CIDP, Guillain Barre, Lyme's, and the funny one of Acholic Neuropathy. He received another round IVIG, High Dose Steroids,
30 More Days in Rehab - he continued to get worse and worse, started to lose feeling in his hands and arms - did get a treatment of IV antibiotics.
3 weeks at Presby in Pittsburgh - A 5 day PLEX (plasmapheresis Treatment) was done
3 weeks in rehab in pittsburgh - One more PLEX treatment was done
then finally home for the last three weeks.
They said he has Myelitis -inflammation of the spinal cord, but they have no idea
what is causing it

He has no use of his legs, he can feel touch and pain, but otherwise no use.
he has lost bowel and bladder functions - he has a foley cath and bowel treatment regimen
He has limited use of his arms and hands - he has lost feeling up to his chest.
he has lost a lot of muscle mass and at least 35 pounds overall

He has had:
15 MRI's
4 CT scans
4 Spinal Taps - high proteins levels and shows inflammation
A spinal cord biopsy - also just showed inflammation
a PET scan - nothing showed on this test
Boat loads of blood work - WBC low and high, RBC low and High, Creatine was always off, potassium is low,
and 4 EMG's

His last EMG, done last Tuesday, the Neuro doc said that it pretty much shows he has ALS, his muscles are shrinking and have gotten worse since the EMG he had done in April. But they would like to do one more MRI of his brain and 2 more PLEX treatments to see if he shows any improvements before he gives an official diagnosis. That is 2 more months of sitting and waiting. It is aggravating, and confusing and exhausting. My husband walked into the ER in February, and is now confined to a chair. He is of course in complete denial over all of it, will not even consider ALS. I would just like to know something, some kind of a diagnosis, something to process.

He did have some tongue issues during his stay in the hospital, he said he tongue felt numb, and he is not able to blow his nose, but otherwise his breathing is fine at the moment. he said the numb lose of feeling in his legs and arms is hard to explain- he said it feels like you laid on your arm wrong all night, like a carpal tunnel numb rather than a pins and needles numb,

While at Presby he had a Neuro team of about 30 docs, students, residents. They said that they have never seen anything like this. They even went so far as to consult a Neuro doc at the Mayo Clinic, and he also got samples of the spinal fluid. They just keep telling me that none of Mikes "pieces" ( referring to test results) are falling into once category for a diagnosis. I am not sure how one test, the EMG can say he has ALS, but none of the other tests do?

Has anyone ever had the PLEX treatments? Did they make any kind of a difference?
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
11,352
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I'm very sorry to hear of this rapid deterioration. Can you post Mike's deidentified EMG? We could be more helpful. However, we always advise a formal second opinion, and this is no different. Can you get to Baltimore (Johns Hopkins) or Philly (Temple or Penn) for example? The Cleveland Clinic has a telehealth second opinion program as well, certainly not the only one.

Plasma exchange is used in several neurologic disorders, including transverse myelitis, but not ALS. Still, no response to PLEX isn't evidence for ALS per se. And, as you have indicated, the rest of his picture really doesn't resemble ALS. Did they run blood cultures?

Best,
Laurie
 
Status
Not open for further replies.
Top