progress

[highlandmck]

dx 2011
3.5 years later
In permobil chair, left side issues now noticing right side similarities of when disease began.
Doctors think its progressed rather fast, i mean they noticed a difference of me being inpatient in rehab for 3 weeks saw my weakness grow in that time.
Anyone else progressing this fast?
seemingly still saying i have rrms.

last doctor visit i said things are getting weaker i feel like i am slowly dying, although i cant say how that feels, he says he can understand that.
he i think is also scratching his head as no meds seem to work.
Steroids work but weakness afterwards make me think the steroids caused large part of issues.

My neuro is hard to get hold of even when i need him 6 - 9 Months for appt's.
So for now i am frustrated and lost..

[fishead]

rrms is no "free ride".
You could have it and are experiencing some flares.

What makes you think you have PPMS? Have you discussed it with your Neuro?

[mercadies25]

I also feel the same way, unfortunately this is a progressive disease. Some go faster than others. My last neuro visit I felt that I was progressing and acted like I was. He started looking thru my files to see what his evaluations said before. Yes, I know they do that but he has never done his evaluation and franticly looked at my other mri's and evaluations.

I was scheduled another mri and now am changing from rebif to tysabri because he doesn't feel the rebif is doing anything for me.

Don't give up yet. Keep fighting.

Good Luck to you!!!

[highlandmck]

rrms is no "free ride".
You could have it and are experiencing some flares.

What makes you think you have PPMS? Have you discussed it with your Neuro?

i don't think i have that i guess the title progress leads to that conclusion.
I don't know what i have my rehab PT doc ordering MRI on me where the neuro should be doing that but neither i or rehab doc can get a response from the neuro and he seemingly the best there is for MS.
All i know is on the edss scale i was marked as a 7.5 heading very soon to a an 8

below notes from my rehab doc...

The patient is having some worsening spasticity and weakness. We will try increased baclofen.
He has tried tizanidine and this knocked him down. Did discuss Dantrium and labs/risks. Botox
was limited - could be from underdosing or the worsening of his condition. Also, there is a concern
expressed about getting in with neurology, so I will reconsult them. Because of the worsening, I
am getting an MRI brain/c-spine/t-spine with contrast and without. Follow-up with me in 1 month
closely..