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A MyMSTeam Member asked a question 💭
Hull, UK

Hi, I was officially diagnosed with MS in November last year. My first severe attack was in December 2011. But doctors have evidence that I've had it since 2004 and probably all my life.

I'm assuming it's relapsing remitting. I've been numb for four years. And exhausted for the last two at least. He hit me again last May 2015. In the last six months I have now got slight tremors, I've got slight twitches with my body will jump a little bit in different areas, started to get tingles and itches… read more

October 10, 2016
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A MyMSTeam Member

Have you had new MRIs with and without contrast with what you think may be relapses? Relapses are new or worsening symptoms that last between 24-48 hours absent of the usual triggers for what would cause pseudo relapse. Usual triggers are things like heating of core body temperature, illness, stress. An actual relapse may cause new, active, lesions which should be picked up with the contrast MRI. I can't tell you the positive or negative of DMDs because I don't take them, not that my neurologist didn't try to get me to take any (I only took aubagio for 3 months), but I'm ppms. I don't know why your neurologist wouldn't label your RRMS because there are meds only for RRMS. Usually doctors don't like to label either of the progressives.

October 10, 2016
A MyMSTeam Member

Thank You, there was a letter sent to my doctor in 2012 from my neurologist saying it was likely MS then she finally diagnosed me in November 2015.

The last 'known' relapse I had was may 2015 with new lesions also in november 2015 but there have always been new lesions. Usually 3 or 4 new and 3 to 4 old almost everytime, well thats what I'm told. So my neurologist says mild MS.

I've had periods in last 2 months where I've barely been able to move, 3 weeks straight at one point caused by fatigue mainly but was told it was the weather, and about 4 month ago where I could not move at all for a week but I had an infection then, I was given antibiotics and was actually the best I have been in years for about 6 week after that. All these tremors and jumps have been last 2 months and eye wobbles as I call it since the start of the year. majorly increased fatigue in last 2 months. I've always been numb all over but worse and really weak in the last 2 months. itchy feet and slight pins and needles in feet for last 2 weeks.

I guess from my point because no one ever tells me anything I don't actually know if the relapse back in may last year can still be causing this damage.

No one has ever mentioned DMDs to me, although I asked my neurologist in Novemeber on the day of the diagnosis and was told 'they' like to keep people off medication as long as possible. Like I said I just feel like I'm getting worse, new symptom nearly every month, I barely leave the house anymore and yet none of it constitutes a relapse, or an even an appointment. I've actually just specifically asked for one to go over my confusion and options with my MS nurse.

Thanks again, guess i'll know more on 4th November... until then :-/ Lost!!

October 11, 2016
A MyMSTeam Member

If you have definite MS, and it's not ppms then your doctors already should have at least discussed DMDs with a serious consideration for starting one. Waiting to start or not wanting to give you a diagnosis simply for fear it will follow you life long is a VERY old school of thought. In years past when there was nothing you could do, sometimes doctors delayed giving an MS even though they knew the patient had it because it was better for their mood. But now, since there are so many more treatments, DMDs should be considered from the time a clinically definite RRMS diagnosis is made. You should be asking the question.

Fatigue alone is not considered a relapse, tremors show up late after the injury has happened so if they show up it doesnt mean you are having a current relapse it could be from a relapse you had previously.

October 11, 2016

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