[christobelle]

Hi all,

I posted this in the new member/introduction section but have since seen that there isa specific section for MS related questions so am copying it here.


Bit of history - 13 years ago my right foot went cold and over the ensuing week I lost feeling moving up my right side.

MRI, CT and lumbar puncture were all clear. After a month in and out of hospital I was advised to go home and come back if anything else happened, because they couldn't pinpoint what it was. At that time the neuro had said he was very surprised lesions did not show up (as he believed it to be MS).

During that exacerbation I had severe numbness in my right side, severe nerve pain (even a light bed sheet caused the feeling of a thousand needles on my skin), numbness heightened with heat/hot water, longer leg feeling in right side, incoordination. I was pretty confused then too, as this was all really strange to me.

Since that time, several years apart I have had swallowing difficulties, was diagnosed with Raynaud's, developed a tremor, and more recently have developed quite marked spasms in my right hand and foot which distort the extremities, are quite painful and last anything from a few minutes to 15 minutes.

I finally got myself back to the neuro and he has found I have hyperreflexia on my right side (which is my "number" side - that never left me).

He states that he believes there is a problem in the left side of my brain which is causing this, and that it may be that I have actually had MS for the past 13 years but it simply didn't show up on the initial MRI.

Financial reasons mean that I have to wait on the public wait list for an MRI, and that is scheduled for the 9th of April, with neuro visit to follow up on the 17th of April.

I'm not quite sure what I'm actually asking. I think I am wondering if anyone else has one-sided hyperreflexia, and what that actually means in the context of MS.

So just as a 'here you go', my symptoms are:

- dulled sensation right side
- difficulty swallowing
- dizziness (not all the time, just random episodes where it is as though the world moves and I have to hold on to steady myself)
- right-sided hyperreflexia
- spasms in right hand and foot which distort the fingers and toes and are painful
- right leg feels longer than left
- tremor (noticeable)
- tremor in voice at times
- pain across the chest
- quite marked sweating (increased since I had kids so may be hormonal?)
- loss of fine motor skills

I also think I'm having trouble hearing, and seem to have difficulty sometimes finding the right word (i.e. went to get the kids out of the bath and said I was going to get them out of the washing machine. Meant to say sticker and said supermarket instead. Stupid stuff. Not sure if it is relevant or not).

I would really appreciate anything anyone has to offer to help insofar as offering maybe an alternative that it might be? Or whether they think it is actually MS.

I don't know. I think maybe I just am feeling a bit numbed by everything (pardon the pun).

It has been 13 years. Psychologically I really have dealt with a hell of a lot in that time (including doctors telling me it was a physical manifestation of psychological symptoms).

Any thoughts?

Appreciate it, thanks ever so much.

Oh, and I am a 40 year old female, symptoms first came on when I was 27. All blood tests (extensive) normal except low vitamin D.

[Erika]

Hello christobelle and welcome to NT .

MS is an odd character indeed and it can manifest in countless ways. It seems that no two cases are identical but not having lesions show up on MRI is not all that unusual, especially initially. The type of MRI machine can also make a difference in whether lesions show up or not (T3 machines are very sensitive).
Similarly, one sided symptoms are not unusual.

Have you had your B12 levels checked? If it is low, that could account for some of the symptoms, even if MS is present.

Sorry that you have to wait to have another MRI and to see the neuro, but April isn't too far off. We have the same sort of public health system in Canada and in the USA, others seem to be running into some problems with their insurance as well. Sign of the times I suppose.

Please keep us posted and join us on the forums. There are many great people on here with varied backgrounds, information, experiences and all of us here to support one another. So even if you just need to vent to people who understand, this is a good place to do it.

With love, Erika

[SallyC]

Hello Christobelle and welcome to NeuroTalk.

I would like to ditto Erika's fine post.

[ANNagain]

Welcome christobelle.

I had to laugh at the word substitutions. Long ago I said "airport" instead of "post-office."

I also told someone that I was late because I could't find a "parking meter." I meant a "public phone." They are both things on the street that you put money into. Similarly, is your "washing machine" substitution for "bathtub." These are relevant and should be reported.

I hope you will have some answers and a plan in April.
ANN

[NurseNancy]

hello and welcome to NT.

MS is so individualized it's very hard to put a dx (diagnosis) to anyone's sx's (symptoms). april will be here before you know it. i hope you get the answers you need. please keep us posted.

[NurseNancy]

oh, i forgot to say that if your vit D or b 12 is low, correcting it may help some sx's. it's important for neurological health. there may even be some info on the forum concerning that.

[christobelle]

Thank you all for the welcome

I haven't had B12 tested I don't think. I am now on tablets for the vitamin d though.

I was looking at the date today and realised that this time exactly two months from now I will have an answer (or maybe not lol!!) But I do believe I will have, being realistic about everything.

I realised today I do the substitution thing with names too - for example Philip Rath might become Peter Rich - still P and R, but not quite the same!

The parking meter/phone substitution is completely logical!! Same as the washing machine/bath one. Is this a common thing with MS? So would it be classified as a symptom and not just a coincidence?? Should I mention that to the neuro when I go back?

I have also noticed a pressure in my eyes every now and then. Not painful, just almost as though my eyes "distort" for a few moments. Like pressure from inside pushing outwards, if that makes sense. Not sure if that is anything either. I just put that down to the fact that I am tired.

Thank you all for making me feel welcome here. It is really lovely to have somewhere that I can actually 'talk' about this stuff, as it is not something I can discuss with friends and family at length, because I don't feel fully armed with enough information, nor do I have a definite diagnosis yet, so feel a little askew.

I will more than likely be posting a few things here and there as I think of them, and will also be having a read through the forum itself to hopefully glean some useful information and possibly offer something to someone else in a different situation

Thanks again

C

[christobelle]

I have one other thing I'm not sure is a thing but think might be lol.

My arm is "relaxed" but the muscles seem to be doing things.

I do rub it to try to relieve the tension that is seemingly within it but it doesn't really do a huge amount.

I haven't had this particular symptom before and to be honest it is just quite odd to me. I can hold my arm out quite relaxed yet it appears to be "working".

I would really appreciate any input on this.

Thanks so much.

[Erika]

Sounds like Spasms, which are involuntary muscle contractions that are not under conscious control.

With love, Erika

[Natalie8]

I would add 400 mg of magnesium a night before bed ( it can help with sleep a little too). Magnesium can potentially reduce spasms, twitching etc. It got rid of my twitching/cramping. Good luck sorting this all out!