Are my symptoms MS?: I’ve been... - My MSAA Community

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Are my symptoms MS?

Maggie333
Maggie333

I’ve been experiencing symptoms for the past 10 years but they are becoming more prominent.

B12 deficiency (awaiting PA tests), night sweats, chills, fever, dizziness, nausea, severe itch, anxiety, depression, minute muscle spasms if a limb is touched suddenly, weakness in big toes. The night sweats are the worst.

Who should my doctor refer me to? Endocrinology? Neurologist?

Thanks in advance

14 Replies
oldestnewest

I also experience extreme fatigue..don’t know how I forgot it...then again it’s msybe the brain fog

You should see both specialists. I hope they find what's wrong. ❤🌷

greaterexp
greaterexpCommunityAmbassador

You may need to see more than one specialist to get to the bottom of your problem(s). I wouldn’t assume it’s MS, but try to be patient during the process.

Let us know what specialists you see and what you learn. Here’s hoping it’s sonething easily treated and quickly addressed.

Dear Maggie

I do not recognize all of your symptoms, but fatigue (and not 'tiredness') certainly is a major one! Maybe you forgot because 'short term memory loss' is another symptom..

'My' MS process officially started with a B12 deficiency around the age of 40, soon followed by MS diagnoses at different stages (officially 'PP' now but 'my' MS seems to develop very slowly?). I am 55 now(!) but I am sure I had the first symptoms in my early teens (problems with my eyes, an 'attack' when I was only 11). I suppose one and another was delayed by the fact that I emigrated at the age of 32 -from The Netherlands to the UK-, and I more or less had to start with a 'new' medical dossier.

I do have a wheelchair now, but only use it 'when I feel for it' (holidays for example). I mainly move around in my car or walk (read 'stumble') around with sticks/ supports.

I have been on lots of medication from the start (for example for mood and bladder control). I am 'lucky' in the way that 'my' MS has not been that aggressive so far but every 'MS case' is different I suppose (as are people!).

Still, it might not be MS! I was just alarmed by the fact that you were tested on a B12 deficiency plus the problems you have had so far. Good luck.

Maggie333
Maggie333 in reply to knokkebok

Yes I’ve been deficient for 10+ years but it was only detected 2 years ago when I was so unwell. So from the age of 16.

I take 3000 IU's each - Vit. D and Vit. B12. I was told to do so when first DX in May of this year as both levels were noticed to be low, not really low, just wasn't at the top of the suggested Bar.

Vitamin B12 deficiency is not a necessary symptom. My Vitamin B12 level is through the roof (so high I have been told to stop taking any vitamin B supplements).

knokkebok
knokkebok in reply to IFwczs

You're absolutely right!, I should have said one and another slightly different. Instead of saying 'my MS process started with a B12 deficiency', I should have been more specific...

I had just returned home after a jogging session when my legs 'suddenly' completely gave up. I was a smoker at the time (nickname 'Marlboro Man..') so I blamed my bad habits for one and another. However, I had never experienced anything that extreme before, so I decided to pay my GP/doctor a visit.

One of his conclusions at the time was that I needed/ might need B12 injections, which were given accordingly over a period of time. Still, after having 'hammered' my knees to check the reaction to that (came straight up in a sort of funny way...) he also referred me to a neurologist. A brain scan followed soon with an MS diagnosis as a result (RR to start with soon changed into 'Progressive MS'). So this is slightly more detailed......

BTW, I finally quit smoking 11 june 2007, one of my few big 'achievements' in life (well OK...., it certainly WAS at the time.....)

IFwczs
IFwczs in reply to knokkebok

It's going to sound crazy but you should be glad you have MS if it got you to quit smoking. My dad died at 39 from pancreatic cancer, which has now been linked to smoking, He smoked 2 packs a day. I am sure he would have wished he had had MS instead...

I was diagnosed with RRMS, but I personally think it's PPMS or SPMS. It doesn't seem to make a big difference. What DMT are you on?

I immigrated from Europe to the US. I am thinking I got my MS from Bayer - I lived across a Bayer plant for a number of years.

CalfeeChick
CalfeeChickCommunityAmbassador

As you know, we aren't doctors here. I would suggest a neurologist, preferably one that specializes in MS. At least that way, it could rule out most neurological diseases. Let us know how it works out for you.

Maggie333 I hope you don't have MS but I also hope you find answers because the experience of having major symptoms without diagnoses is difficult and frustrating. Start with your PCP and get referrals to specialists or self-refer to a major teaching hospital. After decades of trying to explain my diverse symptoms to a variety of PCPs, I finally self-referred to a Neurology clinic at a major teaching hospital...and MS was diagnosed (blood panels, LP, and multiple MRIs) in two weeks. Of course, there's no cure, but at least I know the cause, and also know my symptoms were real, not imagined.

carolek572
carolek572CommunityAmbassador

Maggie333 Don't assume that you have 'ms'. Let your medical team do their job! I am praying that you do not have 'ms' and that your worries are just that ~ worries. It would be nice to know why you are having all those symptoms so I am hoping that you will get some answers soon. Keep us informed of your developments.

Keep Smiling and Stay Strong,

Carole :-D

Hi everyone,

MS was ruled out.

Hidden
Hidden

That's good. But do they have any idea what's going on?

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