hello

[flappyfeet]

Hi my name is Claire

I am 43 years old and have my follow up appointment with neurologist on 20th feb so far I have had an mri which results showed inflammatory lesions at the level T5 an the right and C6 posteriorly, and lumber puncture initial results support the diagnosis of an inflammatory disorder affecting the brain and spine. does this mean I will finally get to find out what the cause of my balance and coordination issues, bowel and bladder incontinence, and why I have been steadily getting worse for last 2 years to the point I only leave the house to go to work 1 day per week and use a walking stick, feel a bit alone at the moment and unsure of my future but trying to stay positive. my family have been incredible in supporting me through this but it would be great to hear others experiences i fear that the diagnosis will be ppms

[ptlike]

Hi Claire, sorry to hear about your problems. If ppms there is a new drug available to help. I hope things work out

Take care

Peter

Edited 31 Jan 2017, 4:47 pm by ptlike

[Skippysprite]

Hi Claire

 

Hopefully you will get some answers at your appointment, but it maybe your neuro will want to monitor you further before making a definite diagnosis.

 

If it does turn out to be ppms, please do not think it is the end of the world, there is still a very worthwhile life to be had, different to what you may have planned perhaps, but with some adjustments, still very good.

 

Also with all the research going on now, some new treatment for ppms looks promising.

 

Hang in there, and remember you are not alone, we are all here to help when we can.

 

Please update after your appointment to let us know how it went, take care.

 

Pam X

[flappyfeet]

well here is my update he has diagnosed me as ppms and he is gonna refer me to ms nurse and for dmt.

[Skippysprite]

Hi

 

Welcome to the club that no one would choose to join, but it ain't all that bad, honest. Give yourself time to get your head around it, lots of different emotions, but that's normal so don't be too hard on yourself, and take one day at a time.

 

Did the neuro mention DMT's, only as far as I believe, thy do not work for ppms and we don't meet the criteria for them?

 

Interesting how different neuros have different ideas, but you will know more when you see the ms nurse.

 

Pam X

[flappyfeet]

yeah he did mention dmt said it would bring down the inflammation in my spinal fluid and possibly slow down progression but didn't go into it in great detail said he will refer me to ms nurse who will discuss further with me.

 

Claire x