Curious,Ms Doctors Opinion

[chrissyle]

I haven't been on in a while but since I've seen an Ms doctor and he seems to think I have a progressive form of the disease Soo...I guess my question is how can that be?I have only one lesion on my brain and optic Neuritus in one eye much pain and foot drop.So just wondering if anyone else has been told this or if its even possible,please any info will help me understand.Hug:)Chris

[Sumanadevii]

From my limited understanding, PPMS tells her story in the spine.  There are few lesions on the brain.  It presents itself with no real remissions.  It attacks normally those over 40 both men and women.  It is associated with a quality in the decline of walking.  

Just what I was told...

[twopack]

This is certainly not something I know a lot about yet but I was thinking that this type of determination isn't usually made until at least a year after diagnosis.  I thought the doctors had to have a while to map out how your symptoms come and go.  How long have you been diagnosed with MS?

When it comes right down to it, it seems all MS is progressive.  It's just a matter of what the pattern is.  I'm not sure that primary progressive is more agressive in nature or results in more disability sooner (although I did initially think that was so).  The worst part would be that the DMDs aren't prescribed for treating PPMS.  

Can anyone tell me if we are sure immune modulators don't change the course of PPMS
or
are they not indicated because the drugs were just never tested in that particular sub-group of MS patients?

I hope you can talk to your MS specialist and get this all clarified.  We all need to be active participants in our own diagnostic and treatment plans.

Mary

[chrissyle]

I guess he's basing it on very few admissions,I have alot of symptoms/problems but like I said I only have one or two lesions the last I new,just had another Mri on stronger machine but don't have results yet.I go back to see him August 5 to talk about the next step and then Ill find out for sure.Thanx again for all your support,best wishes all,many hugs:)

[Sumanadevii]

Do you have lesions on your spine?  

[rendean]

Hi,

I can't help with your specific question but there are several members here with a progressive form of MS. Hopefully the will chime in soon.

Have you considered getting a second opinion regarding this dx? I know I would want another opinion just to make sure this is actually what is happening to my body.

Sending good thoughts that the dx is wrong, especially with your limited symptoms. However, you didn't mention what your MRI looks like. Perhaps he is basing the dx on the MRI results.

With good thoughts and a hug,
ren

[Sparkysarah]

This sounds like it has been unexpected and quite a shock. It is bad enough receiving a dx of MS but to then be told it is progressive is very frightening.

Did your MS doctor explain on what grounds he thinks this dx fits your symptoms as it sounds as if you have just been given this label without enough explanation.

I am sure that others will chip in with their experiences and I just wanted to send some support and say hope that your have friends and family around you who you can talk to.

With best wishes and big hugs

Sarah