PPMS - how were you diagnosed?

[anon07072023]

Hi everyone,

I was wondering for those that have PPMS - how were you eventually diagnosed with it?

Thank you,
Kelly

[HVAC]

If it is PPMS getting diagnosed slowly does not make a difference to the disease, although it is annoying.

The most important thing is that your symptoms are being addressed and treated as best they can now.

I am learning that things move slowly in medicine. I look back at conditions I had where in the span of thirty years I saw over fifty of the same kind of  specialist until I found the right one.

I am sorry your body is betraying you. It is totally unfair.

Alex

[anon07072023]

thanks for sharing Alex. I'm in limbo right now. My neuro says I had partial transverse myelitis and his PA says that I had/have clinically isolated syndrome. My symptoms have continued and have gotten progressively worse since they started about almost a year and a half ago.

I have at least one lesion in my spine but my lumbar puncture was negative.

I'm just trying to connect the dots....

Thanks again,
Kelly

[HVAC]

In September 2007 my PCP noticed neurological issues on my yearly exam. She sent me to neurologist who thought I had something else. He did a brain MRI but not MS protocol.
He said 4 neurologists looking at the MRI all thought it looked like MS. He was leaving town to take another job so he did not do an LP.

I went to many neurologists and had many test which all pointed to MS until March 2009 when I had an LP. I came back with 12 o-bands and after other diseases such as Lupus and HIV were ruled out I was diagnosed with RRMS.

This made no sense to me since I had never had a classic MS attack that I knew of. I had had neurological symptoms since childhood so I did not notice the MS. It was normal to me.

In February 2010 I was reclassified as PPMS. 1. Because the MS has gradually progressed and  2. because I have few enhancing brain lesions.

PPMS is usually diagnosed in your 40's. The same neurologist usually follows you for a year. It usually starts with walking issues. You usually have more spinal lesions. Few enhancing lesions.

Neurologist do not like to put you in this catagory because there are no FDA approved treatments for PPMS. Insurance companies do not have to pay for DMDs since they are not FDA approved.

It is thought by some researchers to be a different disease. It is a disease of degeneration as opposed to RRMS which has inflammation.

My Dr. told me basically my nerves are dieing. In my case the process has been going on for over 40 years so it is very slow.

Doctors found brain stem problems with me in childhood. I have had balance issues, double vision, and weird reflexes as long as I can remember.

I do not know if anything I said helps.

Alex