Hi all, ive been dx since 2006, and even though i experience around 4 times a year, a few weeks feeling awful, weak, malaise etc etc, (well im never feeling great but just try and manage as we all do) but these times leave me housebound basically, but the last time i saw the ms nurse a couple of years ago, she said its not a relapse. So to be honest i never go to the docs/nurse with it but these last 2 weeks ive been like it again, and am really fed up and worried now. In my opinion its a relapse as its a real worsening of my ânormalâ state. What does anyone else think and do you have a similar issue?xxx
Hi Sophie
Would definitely contact your nurse.it may be relapse or something aggravating your m.s like an infection.
This happened to me recently along with funny neck sensation and difficulty swallowing and she said to get a full blood test.
Turns out my thyroid is going a bit loopy after coming off tysabri but just have to be re tested in a couple of months.
Also bladder infections are a common culprit and donât always show obvious symptoms.Also happened to me.
Good luck and hope you feel better soon.
Bx
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Hi Sophie
There is an attitude amongst some neurologists that extreme fatigue on its own, without any neurological signs, is not a relapse. This would obviously spread down to the nurses under them. This does not, as Bx has pointed out meant that nothing else is going on.
All my relapses (when I was RRMS) were fatigue. I was reclassified as SPMS, and had a major attack of fatigue in March which was not MS, but Pneumonia, and saw me with a month in hospital. I found out later that it was very serious indeed.
Get help. MS Nurse, GP, does not matter. Just make sure it is not just a relapse.
Geoff
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if you are thinking it âcouldâ be something to be concerned about, then by definition, you are already concerned about it.
when things are persistent, they tend not to resolve themselves. given the added complication of a long term ailment such as MS, and you deserve to err on the side of caution.
if only having one incurable disease meant you were immune to all other things!
To me, any deviation from how i usually feel, which continues over several days or worsens quickly, is worthy of investigation.
the very best of luck to you!
I dont know if i have relapses i was diagnosed late in life, and it just seems always on going, BUT i do have really bad days which can last for 3/4 days where i feel like i have the worse flu, not achey per se, but my legs ache, and i buzz everywhere, my head sounds so loud i could scream like i have an extreme temperature (in fact its usually low), and i am so tired i could die. I can just about function. Then suddenly it goes. Mind you sometimes it is a UTI.
I think the problem with having MS is everyone thinks the symptoms are MS. My friend was really sick and she had pain in her ribs told it was the hug, and her shoulder. I told her get to GP again i think you have gallstones, and she did. She was having a really bad relapse and they said it was MS. The gallbladder was infected and she was really sick.
Thank you all for your replies, I really appreciate it, I just went to the docs and explained the situation, she said I should get in touch with the MS nurse and arrange a review of my situation, so although the dr couldnt give me anything for right now, I think its probably wise that I do get reviewed. I normally donât bother with the ms services as they always said theres no treatment for me.
I spoke about my worries about holiday on monday, and she felt I should just go, which is my aim anyway, but donât think she really understood how when we are rough, its impossible to do anything at all, let alone think straight about packing a bag and leaving the house!!!
but thank you all again lots love xxxxx
Just following on from this, i HAVE NEVER BEEN OFFERED DMDS, oops caps! I was dx 9 yrs ago, like all of us prob had it long before then, and now i am worried that I should have been on dmds all along, the thinking behind not giving them to me was that I didnt have clear cut relapses with typical relapse symptoms. However there is a massive huge difference in my ability to function the rest of the time versus how i am right now. i need to get it through to my MS nurse that this is the case, the last time I saw her it was so frustrating, I am by nature a very happy cheerful positive person, but was feeling sad due to feeling so unwell. She basically told me to think happy thoughtsâŚNow, correct me if I am wrong but if I went to visit a friend who had bad flu or something, and they were pissed off, i wouldnt dream of telling them to âcheer upâ!!! You just know they would feel happier as soon as they felt better! Add to that the fear we all feel when we are rough, well I felt so frustrated and actually angry at her it made me feel worse ha ha ha!!!
So do you think I should push for some dmds,??? Soooo baffled by it all xxxxxxxxxxx
Do you see a neurologist? If not, maybe you should. It sounds like youâve been told you have MS but donât know whether itâs relapsing remitting or progressive. If itâs RR then you should have been (and still could be) offered DMDs. If itâs progressive then DMDs will not help. If you are not having clear cut relapses then it could well be progressive and you are experiencing times of greater fatigue rather than relapses. But, it sounds like you need to have a neurologist tell you after examining you, possibly re-doing MRI scans etc, whether itâs progressive or relapsing.
And if you see an MS nurse who just tells you to cheer up, I would tell her politely that advice to put on a happy face is of no help whatsoever and that youâd prefer some useful information on for eg, fatigue management, prescription drugs that might help your symptoms, vitamins that might help (D &B12 maybe), perhaps alternative therapies and diets that might help and/or DMDs if you qualify. And if he/she canât assist you with any of this, then whatâs the point of seeing a nurse?
Sue
Hi sue thank you for your reply!! the 2nd paragraph did make me smile, re the nurse!!
i havent seen a neurologist for a few years, they kind of felt I didnt need any help, i had optic neuritis twice in the beginning,(10 yrs ago) hence the diagnosis, but any other symptoms i have mentioned were not seen as relapses ergo I must have the benign type of MS. So whenever ive had these times of yuckiness, ive been told they do not count as a relapse, so dmds wont help.
I think it willl be good to have a review, i rang and left a message on the ansafone of the dept, so should get a call back soon.
Thank you for mentioning those supplements, I can look into that, dietary wise Ive tried it all over the years and there wasnt anything that made a noticeable difference which is why im thinking dmds may be the way to goâŚwho knows!! but thank you again for your reply. I hope I can be of help back at some point
sophie x