Hi everyone, new here and just wanted some advice.
I have had many episodes of tiredness, pain, weakness since late twenties (I am now 47) I did see a doctor in late twenties who sent me for a test, the evoked something or other which was ok so nothing else was done and I didnt push. So every so often I get so tired and in pain, twitch and go dizzy I just rest as much as I can and try and get on with things.
10 days ago I had another such episode and my partner insisted on me doing something about it so I went to the doctor and he sent me to the hospital where I had blood tests and ct which were both normal and I was told just to go on as if everything is ok and wait for a neuro appointment.
Symptoms are
Pins and needles/pain which feels like it is burning in both arms, hands legs and feet.
Dizzy spells
Cloudy vision
Memory loss, for example I go to make a drink and the moment I put the kettle on and turn around I forget about it.
Lack of concentration
Extreme tiredness
Arm and leg weakness
Cant find words, stop mis sentence and not remember what I was talking about. using totally different words eg put the plates in the tumble dryer. Repeating myself.
Slurring words or stuttering.
Being hot makes things worse.
So with these symptoms in mind and thinking outside the MS box can anyone help me with a list of things to ask to be checked for?
Also anyone considered the possibility of mercury overload from amalgam fillings?
The pins and needles and pain are driving me crazy so if anyone has a solution to that please tell me
Hi there Angela - you are going through the mill at the minute! I’m afraid I can’t help you much but wanted to say hi and welcome to the forum - there are all sorts of us on here at various stages of diagnosis or non-diagnosis or even different neuro symptoms which are not MS.
Interestingly my doctor mentioned mercury poisoning as a possibility. I think that’s not causing my symptoms but it might be worth you checking it out, not sure how though!
Good luck with the neuro appointment - hope it comes through quickly for you.
I am trying to reseach other possibilities as much as I can. My B12 was ok which I am very happy about seeing as I am a vegan which I didn’t mention till the doctor looked and said all was fine because often that gets brought up as the problem
I have quite a few amalgam fillings which is why I looked into it, a test is not easy though but I do plan to speak to my doctor about it.
I am going crazy with the pins and needles, vibrations, hot spots and pain today and have not even managed to get up. (lazy cow lol)
I feel bad because I have got into a new relationship its only been 10 weeks and now all this is going on but she is being great.
Appointments here take forever and not sure what I am ment to do with these symptoms in the mean time.
I have quite a lot of those symptoms and am not diagnosed with anything yet but am on some drugs to help combat them - they don’t work 100% but definitely reduce the burning, buzzing, jerks and pain etc. You can have some treatment without a diagnosis.
You can drive yourself mad trying to diagnose yourself so my philosophy (in theory) is that whatever it is will become obvious in time if it’s MS or something like that and to get on with life in the meantime. Which is all fine when I’ve got some energy, not so fine when I feel awful!! Try to do other things you love and go out with your new partner as much as you can as distraction techniques. Annoyingly it’s probably a long haul road you’re now on to find the answer (or you may get lucky).
The mercury thing comes up from time to time, but while there’s a little bit of evidence that it might cause some problems in some people, it has been effectively ruled out as a cause of MS. There’s also little chance of mercury leaking from fillings so it’s unlikely to be causing your symptoms.
I would think that a vitamin B12 deficiency is a more likely cause (your symptoms fit very well too). A normal B12 blood test does not mean that you are not deficient - the recommended levels vary across countries and the tests are less than perfect. If your test results were normal, but low, then you should be asking for more detailed B12 tests.
It sounds like you are waiting for a neuro appointment? If you are, then I’m afraid it’s a waiting game (but do ask your GP for more B12 tests). If you aren’t, then please ask your GP for a referral to neurology, and then you’re into the waiting game again. You shouldn’t need to tell the neurologist what you want to be tested for: they’re the experts after all. Hopefully you’ll get some answers soon.
Being vegan I am very careful about B12, I take a b vit compound as well as extra B12 to keep that covered, I also take a vegan multivit/mineral.
Yes I am waiting on an appointment with neuro but going back to the doctors on Saturday because I need something to help with these symptoms whatever they are down to. I have been unable to do any work for a few weeks now.
Maybe I just need a higher dose, and all will be back to normal
my symptons are virtually identical to your own, ive had some symptons for 18 months, i started to see my doctor about 12 months ago, i went to see a neorologist last september and 2 days later i had an mri scan, was told it was relatively clear, but the last 6 months my symptons has gone worse, now affecting my hands arms, fatigue, cloudy vision all variable times, can happen any time and somtimes symptons last for minutes or can last for days, my mother had ms and died 10 years from it so i have a chance i might have it, i have to see the neulogist again next month, in my mind the probabilty of me having ms is growing stronger, the waiting is worse than anything, i just want to know if i have it or not.
I hope that you find an answer soon. I am way off knowing anything considering the waiting times for a neuro appointment. Do check back here and update me.
My gp decided all my symptoms were peri menopause as well about 6 months ago and started me on the patch, which after being them for the 6 months made no difference what so ever. I went back to her when I got the numb lip and tongue a long with a long list of symptoms (most the same as yours) and said it was something more than menopause. That’s when she referred me on. I stopped the patches as I didn’t think they were beneficial and if I didn’t need the extra hormones I wasn’t going to wear them.
My gp decided all my symptoms were peri menopause as well about 6 months ago and started me on the patch, which after being them for the 6 months made no difference what so ever. I went back to her when I got the numb lip and tongue a long with a long list of symptoms (most the same as yours) and said it was something more than menopause. That’s when she referred me on. I stopped the patches as I didn’t think they were beneficial and if I didn’t need the extra hormones I wasn’t going to wear them.
She looked at the symptoms that I have (listed at the begining of this post) and put that together with my age and decided that was more than likely the reason for my symptoms. I had reminded her that I have had bouts of similar things going back years but she still stuck to her theory. She is doing more blood tests. I asked her if there was anything else it could be and she said not really but would do a few blood tests. She asked 2 menopause type questions both of which I said no to but apparently we don’t all get the obvious symptoms.
I could very well be peri menopausal which is fine, but if I am then the severity of the symptoms are not nice lol.My partner is a little concerned that menopause may mask something else. Easy to put everything down to.
I have to wait two weeks to be fitted in for blood tests so will just wait and see I guess.
On a better note the pins and needles have got less
Pins and needles back today, even lips and tongue feel weird and can’t move without feeling dizzy. Can menopause really get this bad I wonder? Also I have noticed that my mixing words up and forgetting words is getting worse and not just verbally, it is happening with writing too. When I had an eye test a few weeks ago at the hospital he asked me if I knew that I did not read the letters out in order. I read them all just mixed them up.
Hi eveyone, good news is ive not got MS, the bad news is i have Fibromialgia which similiar to MS, i can still work, not sure if i get worse or not, il let you know in the future, thankyou mark
