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Real members of MyMSTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

I Was Told My Form Of MS Is Relapsing And Unremitting. I Haven't Been Told What It Is To Have An Attack, Or How It Looks.

I Was Told My Form Of MS Is Relapsing And Unremitting. I Haven't Been Told What It Is To Have An Attack, Or How It Looks.

posted about 6 years ago
A MyMSTeam Member said:

Gotta love typos. Or not. Glad it was helpful. If I remember correctly, some 80%+ cases of MS start as RRMS, so there is a TON of information. Don't shy away from checking out other MS related resources, e.g. the National MS Society or the MS Association of America. These are both a wealth of information, in particular at least for me is the NMSS.

posted about 6 years ago
A MyMSTeam Member said:

I will say I had memory loss, but I remember a time when at work I heard people saying,she's having a seizure and another saying she's going the worm. A lot happened that day, I was so confused and didn't go to the hospital. Months went by and I flashbacks.I was still walking and talking fine until about six months later.

posted about 6 years ago
A MyMSTeam Member said:

I'm sorry, that's a typo. I was actually diagnosed with relapsing and remitting. This response was useful tho, it's frustrating getting info on this condition when a lot of doctors don't even know much about it, then are offended when u try bringing them information in hopes of getting better. Thanks :)

posted about 6 years ago
A MyMSTeam Member said:

It is tough when doctors use language that make it difficult to learn about what you exactly have as the terms used are typically not found in the common language of MS. A quick internet search rendered the results of four types of MS: relapse-remitting (RRMS), primary-progressive (PPMS), secondary-progressive (SPMS), and progressive-relapsing (PRMS). In light of the doctor saying your MS is not remitting, it would seem reasonable to rule out RRMS and SPMS since RRMS progresses to SPMS according the National MS Society (and other resources). So that leaves PPMS and PRMS. Maybe research them both and see which most closely aligns with what you are experiencing, and then focus on researching that type of MS. Just from a quick look it seems the main difference between PPMS and PRMS is if the relapse is following a regular progression of getting worse at each relapse. I'm no doctor by any means, but from what I quickly found if the relapses are worse each time, it is likely PPMS. If they are just relapses that are not getting worse, it would seem to be PRMS.

Unfortunately I am finding that when diagnosed with MS, you have to be your own best advocate and researcher. I have found this to be true spanning three different online MS forums, including this one. Take the information your doctor gave you, and try to piece it together to help be clear for you. Also, don't hesitate to ask your doctor's nurses. I had no clue what my specific diagnosis was aside from MS, so I asked her because I didn't want a lecture from the doctor. She told me, and I went from there.

posted about 6 years ago
A MyMSTeam Member said:

Any new or worsening old symptoms that last over 24 hours was what I was told before dx. My neurologist has a website where I can message him. I send him updates and ask questions. If your neurologist has a way for you to message him/her, you should use it or call if you feel the need. If they have a nurse, they may also be able to answer questions or pass along info or questions to your doctor. The general rule is 24 + hours for neurological symptoms for relapse. Hope this helps

posted about 6 years ago
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