i had my six monthly appt with the ms specialist on friday as im waiting for my official dx of ppms as he has stated it on previous appts that its looking like it but its just a watch and wait he says!!! .
my physio faxed him a report before i got there stating the things she has found over the last few sessions.
ie my pelvis is leaning to the left by about two inches due to muscle weakness and muscle inbalance
left sided muscle weakness , weak hip flexors, right side muscle atrophy on my trunk leg and shoulder,
all getting worse !! my weakness in my hip flexors and quads is now gross, she says
he did the usual neuro exam and said he wants to try the lumber puncture again as last time the could not get the needle in due to spasticity in my lower back. so he as requested an appt in january and may repeat my scans after that .
he also said that he wants to trial me on a drug called SINEMET that might help my tremors and stiffness .
he said its used for parkinsons but you DO NOT have that but i just thinks it might help with your symptoms. cos at the end of the day anything that helps your symptoms is better for you long term ??.
so as you can imagine im very confused as to what the hell is going on !!!
any thoughts folks have any of you heard of the drug or had simmiler experiances in your journy with a DX
Hi Mick, sorry, not heard of that drug. id be a bit wary about anything that isnt trialled and tersted. maybe Im being over cautious there, if it has had it`s trials.
But I know what it`s like to be kept in the dark re a diagnosis.
My story goes back 15 years now. i began with falls, then spasms and bladder/bowel accidents.
After being given a 95% diagnosis of PPMS, then a while of being pushed from pillar to post, I now have a diagnosis of spastic paraparesis, cause unknown.
Hi Mick, I have actually read about a drug that’s used for Parkinsons now being used for MS (or maybe I read about trial of it).
If the doctor has said that it is NOT Parkinsons, then you can believe that. The days when doctors lied to patients and withheld bad news are long gone. If he thought it was Parkinsons he would tell you so.
Some symptoms are shared by MS and Parkinsons and I’m thinking particularly of tremors… so I’m guessing the thinking is that if it’s helping tremors with Parkinsons then it can work for MS.
Sounds to me like he thinks it is PPMS but still wants that extra bit of evidence to confirm dx… hence another scan and LP.
Sounds like you have a good neuro Mick who is willing to try something to help you and also is willing to have another go at LP to help to confirm dx.
I had multiple lesions on my brain MRI and some on spine but they still insisted on doing an LP to confirm. I asked what would happen if I didn’t have the LP and they said they could only give a ‘possible MS’ dx.