Multiple Sclerosis Community

Dear thestace,

The short answer is find another neurologist. Preferably someone who has a lot of experience with MS patients.

Though I'm not a doctor, your description of symptoms coming and going with a corresponding increase in brain lesions sound suspiciously like MS flares.

Please do let us know about your progress.

Kim

Thank you for your input. I have been searching for a MS specialist in my area ( it's rather small ) and have found one. Plan to call and see what I need to do to transfer my information. Thank you again and I will keep you posted.

These symptoms could be a manifestation of MS. If your neurologist is having trouble making a diagnosis it might be worthwhile getting another opinion.

Thank you for your response. I have an appointment with a different neurologist, but not until the end of July. Crazy, but I am willing to wait. Had an eye test done a few weeks back that confirms I have optic neuritis and my currect doc still does not want to say I have MS. Oddly though she is willing to put me on MS meds? I also forgot to metion that when I get sick with a cold or flu my symptoms go away. I have had a cold for the past 7-8 days and felt great. Now that my cold is over, I feel my other pains coming back. Strange? Don't know if that is common for people with MS. Again, thank you for your words and I promise I will keep you posted.

Well I thought I should get back and give an update on my health. After many months of tests and questions I am being told that I have Primary Progressive MS. I have not had any form of relapse since my symptoms began again in September. I am glad to know I am not crazy but now trying to figure out how I can really help my body. I am on an anti seizure med to help with my tingling and some days it seems to help. Also on 6,000 ibu of Vit D. I am taking high dose Vit B to help with my fatigue. Think I am getting use to the way my body is now and just really try to enjoy the days that I don't feel so bad...few and far betweetn now, but I am not giving up. If anyone has adivise for people with primary progressive I would love to hear it. All I have read is just more about treating the symptoms vs treatment for this type of MS. Thanks for you support with your previous emails.

Sorry to hear of your PPMS diagnosis. Though there are no FDA-approved therapies for this form of MS, some patients are trying Solumedrol infusions, methotrexate therapy (this is a pill), some are experimenting with Tysabri infusions and Novantrone infusions, and one of my friends with PPMS is trying daily Copaxone injections. You must tell your doctors that you want to do more than symptom management. At the very least, they should let you know about clinical trials in which you might participate.

My other thought is that you might consider getting another opinion on your dx. If you have any doubts about your dx, if there has been an inflammatory phase and relapses in your recent past, then perhaps there is a chance that the drug therapies which treat RRMS might be beneficial to you right now. If you haven't already, ask your diagnosing doctor lots of questions about how they arrived at this dx.

If you are interested in experimental therapies, you can do some online research to find out more by visiting the Multiple Sclerosis Foundation, Multiple Sclerosis Association of America, Multiple Sclerosis Society, Cleveland Clinic, Mayo Clinic, The National Institute of Neurological Disorders and Stroke (NINDS), The National Institutes of Health (NIH), and visit other MS forums such as medhelp and healthcentral to read about what other PPMS patients are doing to manage their disease.

It's up to you to push for more treatment options. Please keep us updated on your progress and the treatments you might undergo. And take good care of yourself.

Kim

Hello thestace,
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I am also in the PPMS category and I am Kim's friend who is currently taking Copaxone to treat my MS (am I your only riend Kim?!). My doc has said that for men only, Copaxone has shown to beneficial in slowing down (and even repairing) some of the damage caused by MS.

I have not had good success with the Copaxone. My symptoms have worsened considerably since going of Tysabri and starting the Copaxone.

I am seeing a new doc in July and I am going to seeing if I can get back on Tysabri.

Good luck with your management of your MS.

Dave