any one go from rrms to ppms?

[4boysmomRN]

Hi everyone, It has been great to see all these messages and know that I am not alone or crazy!

I have a question maybe you can help out with.

I was diagnosed in 2004 with RRMS after some big things, but had things going on from at least 2000. I was hospitalized for 1 week, doing IVSM was told it was RRMS after first being told brain tumor. I got my hospital records and There were more than 13 lesions between brain and spine, more on the spine. None of them were enhanced lesions.

I was on avonex for close to 1 year, but it made me feel really bad and lose my hair so I stopped everything for awhile, only doing oral steriods when my sx were really acting up, numb leg, dropfoot, gait problems, visual disturbance etc.

I got really bad this april and it hasn't let up yet. I just feel so much worse. I have had @ least six MRIs since being diagnosed, including one in april. Nothing has changed, their has never been any enhancing lesions.

My question is has anyone on here ever re-diagnosed with PPMS after RRMS diagnosis? How did it come about? what were your sx? Did you bring it up or did your doctor?

I know it is just a label and it does not really matter, but I am currently on copaxane, and I hate to put any medicine in to my body if not neccessary.

I am an RN, and thinking of bringing this up at my neuro appt next week, but I don't want to be pushy or seem like a know-it-all because I am a nurse.

Any advice is greatly appreciated! thank you in advance!



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[4boysmomRN]

Thank you for responding to my post. I guess I did not post my question correctly. I did not know if any one had been misdiagnosed or had their diagnosis changed from rrms to ppms. I realilze that the insurance companiew will not pay for any drugs with a dianosis of ppms, I guess that is why I want to know, I hate putting medicine into my body if it isn't going to do anything to help the problem. Does insurance pay for the symptomatic treatment of PPMS, such as ampyra, or provigil? Thanks again!

[lori]

I think I can relate to your situation. My history was a gradual worsening of gait problems over several years except for a brief period of numbness in feet and left hand following the birth of my son 10yrs prior to diagnosis.

My local neuro used the numbness episode to diagnose me RRMS. A second opinion at the Cleveland Clinic called it PPMS. (My lesions were c-spine.)They said there were no available treatments and IVSM that I felt gave me relief would not change my prognosis. Gee, thanks for the brutal honesty!

This was 1993 all the Dmd's were brand new and my local neuro thought they were worth a try, as did I. But he never wavered from RRMS, I imagine for liability issues. I tried betaseron and avonex for 6 months each and the flu side effect got worse every month. I was on copaxone for 4yrs, but I continued to progress. It's impossible to say if I would have been worse without it and I don't regret trying, but after 13 yrs my neuro changed me to SPMS.

Your insurance should pay for symptom relief. I wish you the best as a fellow medical professional...I'm a Medical Technologist and worked in the Immunolgy Dep for 21 yrs. I think it's very important to find a doctor that respects a pts ability to understand our situations and advocate for ourselves, no matter what our background. I have found excellent info on this website, did on-line reseach and brought it to my neuro. After 17yrs we have a good relationship of mutual respect.

Good luck,
lori

Can totally relate to how you are feeling.

Based on my past history I have probably had MS for 13 years but was just diagnosed in April.

I started into relapse last September and have been in the hospital twice this year.

My symptoms are not letting up and actually seem to be getting worse. I stared on Copaxone almost 9 weeks ago.

I go back to my doc on Monday and plan to discuss with him my situation.

Let me know what you find out, all the best.

[ddsan]

RR to SP

After 18 years with RRMS, I have now gone to SP. From what I have read, this is not unusual when you have the disease for a long time. I have been on all the DMD with the exception of Rebif. Some worked, some did not. My MRI's indicate black holes and many many leisons.

I am now on Ampyra as this is simply to improve walking -- which is my main difficulty. Despite yoga, exercise, etc. my balance is not always that good. I pace myself and continue to go, go, as much as possible. My neuro is the one that finally said the ms has moved to SP. I think I have come to the conclusion "it is what it is" and I have to live with it, always praying it doesn't get worse.!

[4boysmomRN]

Thank you

Thanks to everyone who responded to my post. I really appreciate you all taking the time to do so. I am in Ohio, I have to OSU and I am going to the cleaveland clinic in a couple of weeks to see what they think. Again, I don't really care what they label me as, I just hate taking medication with scary side effects if it is not going to benefit me in anyway. Since I have had zero MRI changes in six years, and progressing sx, I just do not see how this is rrms or spms. I do NOT NOT NOT want it to bePPMS. But I am terrified to go on tysabri if it cannot help me. Thanks again!

[rocky282]

I know how you feel

I just wanted to chime in since I am going through similar problems. My neuro has only been seeing me for a year now, and I have been showing problems solid for 2 years always getting worse and now a few over 10 lesions that appeared since December of last year. Soooo We have tried Copaxone, Rebif, Avonex and will be trying Beta next week. If the Beta doesn't work I am being sent to Dartmouth and My Neuro thinks it may not be RRMS but could be PPMS or PRMS (think I got that right). Since he can't show that I have ever had a remission since I started presenting symptoms and I continue to get worse, well he thinks perhaps we may be barking up the wrong tree. And when I informed him that there is pretty much no way I am going to try Tysabri because of the side effects and my mental family history of all kinds of nasty things, he decided we will need to look in other directions if the beta doesn't work. I wish you lots of luck and I know Ohio pretty well having grown up in Pittsburgh PA and where you are headed is a very nice place!!!