I am a 36 year old who has recently been diagnosed with benign MS by my neurologist. I have had symptoms in the past ( 2 other similar episodes in the past 20 years), but was never given the diagnosis until the symptoms came back about 6 weeks ago. When the recent symptoms came, I had pins and needles in my hands, feet, legs and trunk of my body. This slowly cleared over a couple of weeks and now just have the pins and needles in my extremeties, particuarly in my fingers. I also have what I can only discribe as a ‘buzzing’ down my spine, however this is not continuous sensation, and comes and goes when it feels like it!
Does anyone else understand these sensations, and is their any advice out there on what can make things better, worse etc? It certainly seems worse for me if I am feeling tired and needing rest? Some days for me are better and I cannot see any real triggers so just wanting to see if any one else has any ideas? Are there any supplements that can help the symptoms and does anyone have any idea on how long the symptoms may last for, bearing in mind that I have had similar episodes in the past and it has always righted itself after roughly 3 months??? I know I am asking some impossible questions, but any information would be so greatfully received!
Unfortunately ms is variable and unpredictable and can affect us all differently - as well as for each of us individually. A lot of ms’ers find that the temperature can make a big difference to how they feel. For me personally ‘humidity’ exacerbates my fatigue which in turn makes other symptoms worse, so hot baths and the like are out for me! That said I love the sun and grab as much of it as I can. The extreme cold has a bad effect on me too unfortunately.
It’s very much a ‘personal’ condition and over time you’ll begin to learn what to avoid. One of the main things is not to overdo it, try to get a balance that works for you. When you’re having a bad day leave all the unnecessary stuff for another time. But don’t then go mad on the days that you do feel better. Rest is important. Rest before you get tired and try to find shortcuts for jobs/chores that will help on a day to day basis.
There are meds available so if fatigue becomes a problem then speak with your neuro - modafinil helps me enormously but doesn’t completely eradicate my fatigue.
There are also lots of other meds available for symptoms like pain, stiffness, spasms etc and although it can sometimes be trial and error finding the right one at the right dose, they can make a world of difference - again, your neuro will be able to help.
Has your neuro mentioned dmd’s to you and have you been assigned an ms nurse? MS Nurses can be a major help and can also open a lot of doors to other support services. Have a look at the ms decisions website too which has lots of useful information about dmd’s.
Most ms’ers take vitamin D3 which has had excellent reviews for a lot of conditions, so that’s definitely worth looking into. I also take multivitamins, vitamin b complex and cod liver oil capsules - but the main one for me is D3.
There isn’t really any time limit on relapses and how long they last - again, it varies. But again, rest is important. Things like colds, the flu and infections can be worse for people who have existing health problems and can exacerbate ms symptoms, so it’s worth definitely worth considering the flu jab which you can arrange via your GP surgery.
Thank you so much for the reply, it really does help to know there are other people out there with similar things. It helps a lot!
I totally understand when you say that the MS experience is very much a personal thing. I am certainly trying to take as much rest as possible, which I feel hard as I have always been someone who runs around keeping busy, but now I am trying to re-train myself to take as much rest as possible when I can.
I have been taking vitamin B complex and just started on Vitamin D, but no immediate effect as yet but will keep up with it and see if it helps, thanks for the advice!
I know there are no time limits on this, my problem is that I have very little patience and so find it hard just playing the waiting game!! I will keep you posted on how I get on!
Benign MS is my most recent diagnosis. I have had different views from different neuros (but that is another story). When I started to take Lamberts Ginkgo 6000mg tables (1 per day) my pins and needles went. Dont know whether this was a coincidence or not. They are supposed to help with circulation in extremities.
Did you have an MRI and lumbar puncture to get your diagnosis?
Thanks for the reply…that is so interesting about the Ginkgo, I have not heard about that before. I will certainly get myself some and see how it goes. How long were you taking it before the pins and needles began to clear up?
I did have MRI, blood tests, nerve conduction, sensory evoked potential (both upper and lower limb), etc, you name a test, I have had it!!!
It’s quite difficult to get used to pacing yourself - I still battle with it even now. At first my reaction to my dx was ‘oh well’, which I think was largely because I was expecting it. It was a little while after that when the reality of it started to sink in. Even when we’re prepared for it I think a firm diagnosis comes as a bit of a shock, just not necessarily immediately. It’s an awful lot to get our head round.
Best thing to do is just take your time. Don’t make any major or life changing decisions until you’ve got to grips with it all.
Are you taking vitamin D3 or vitamin D? D3 is a more potent form.
I am indeed taking vitamin D but not sure it is making any difference, maybe I should look for the D3 and see if a bot more potency helps matters! I am trying to get my head around the whole situation, but as you know it is not easy! I seem to have good day and then bad days, I am having a particuarly bad day today and not really sure why!It seems definitely linked to how tired I am feeling and when I am feeling like this the tingles and sensations defintely seem a lot worse! I try to get as much rest as possible but in doing so I get frustrated withmyself for not doing anything! I guess it is all a vicous circle!
Anyway, thanks for all your help and advice, it really does help!
Sadly, unpredictability is the name of this game, and sometimes there seems to be no rhyme or reason why we feel bad. Most of us flit between having bad days and good days, or bad days and better days.
Your dx is fairly new to you and generally speaking getting our heads round stuff like this tends to happen over time. Some people have compared it to a grieving process, grieving for our old lives. I’m not sure whether I agree with that entirely, but it sure hits the nail on the head in some aspects, yes.
I get bored silly if I just lay about or sit around but I’m better at it now than I used to be. So mostly in the evenings I tend to do ‘this or that’ and then rest for a bit, then do something else then rest for a while again.
Except at weekends when, other than doing the necessaries I relax and do what I want to do. I have too cos I work flat out during the week and I’m totalled by Wednesday really, so from thereon in it’s a downward slide… Friends & family are always telling me off (in the nicest possibly way) telling me to wind down more often - and they’re right of course. But I still need to earn a living and ‘live’, so it’s kind of like a continual working progress.
In my view ‘going with it’ for now is the way to go, do what suits you and then over time things will seem a bit clearer.
If like me you struggle to not do anything, then try to find things to do which doesn’t require too much effort but which you can do whilst resting a bit. If that makes sense?!
Thanks again Debbie, your words make such sense! I have had a much better day today and I have managed to rest alot but also get some chores done so it is all good! Lets hope tomorrow is another good day!
If I were diagnosed in 2012 I would immediately look at my diet. I believe in gluten free, low fat, low sugar. Plenty of fresh vegetables, no processed foods. No msg. Oh…and quite a lot of red wine!
I really have no idea if this actually helps but it does seem to. I (and others) swear by it. Some think it is rubbish.
Thank you for your post…it certainly has got me thinking of my diet, I think there is some sense in it definitely. I do eat plenty of fresh fruit and veg, but probably too much of things like pasta, rice, bread etc so maybe I will give the gluten free thing a try? I certainly drink enough red wine thats for sure, in fact probably too much!!!
I will keep you posted on how i get on, it surely has to get better than this!