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How significant are these issues?

Hi all you lovely people!

I was just wondering if anyone could give me any idea how significant 2 issues are with the diagnosis of MS.

Firstly, the fact that heat brings on and exacerbates symptoms.

Secondly, that most symptoms (tingling, weird sensations etc) seem to be concentrated on one side of the body.

I ask this because I was reeling off all my random symptoms to a physio yesterday and her immediate response was “Do you feel worse in the heat?” (which I do, to the extent that I haven’t been able to have a hot bath for years). I then mentioned something else and she said “That would be just on the right hand side, wouldn’t it?” (she was already aware of problems with my right leg).

I am now paranoid that she is suspecting MS because of her leading questions, especially as she then followed this up with asking me when I was seeing the Neurologist. She then disappeared into the office and had a very intense conversation with a Nurse (I could see them through the window!), which added to my suspicions even more.

Am I being paranoid, or do you think I need to prepare myself for MS to be brought up at some stage as a strong possibility?

All this hasn’t been helped by the fact that I have an enlarged thyroid and had a call today from my GP surgery saying the thyroid antibody tests done last week need further investigation. I have done some googling and if it is a thyroid autoimmune disease then that nearly always goes hand in hand with another autoimmune disease, and, of course, MS is one of those and the one that fits my symptoms best.

Am I just being paranoid??

I am not diagnosed but… All my symptoms (numbness etc) are on one side (left). The thing that isn’t is the lead like heavy legs i had, which was worse on left side. Since the heaviness went (about 5 weeks after it came) the pain behind both knees (which slightly radiates into calf and thigh but only at back of legs) has remained… in both legs but worse in left leg. Hurts to bend legs, push, pull, squat, kneel etc. like i said, i am not diagnosed… lumbar spine mri results normal but waiting for head result. I am sure you will get some more relevant responses.

Hi purple - I’m diagnosed RRMS and my symptoms aren’t just on one side. Think they probably were mostly on left side to start (and neuro remarked on left sided weakness on doing his exam) but now they’re all over the place!!

Hi Purpledot,

Although it’s often considered a “distinguishing feature” of MS that symptoms are exacerbated by heat, it’s NOT mentioned in the diagnostic criteria at all, so although it might be an informal clue, it would never get you a formal diagnosis.

The same with one-sided versus symmetrical. Some conditions are more likely to cause symmetrical symptoms, but others one-sided. However, again it’s not part of the diagnostic criteria, so you cannot say someone does or doesn’t have MS, purely according to this.

Joining an MS forum tells me you must already suspect MS as a possibility, so would you really be that shocked if medical professionals agreed with you that yes, it IS a possibility?

However, I’m not so sure the Googling is helping. Thyroid disease is not one of the diagnostic criteria either, so having a possible thyroid problem does not imply you must also have MS. On the contrary, rather than making MS more likely, a thyroid problem might even explain some of your symptoms.

Tina

Hi PD,

I certainly wouldn’t say that you’re being paranoid, maybe just a bit sensitive?

Yes, extremes of temperature are known to exascerbate the symptoms of MS (especially heat). My symptoms were predominantly on my LHS (as lesions were on the RHS of my brain).

I can’t remember how far along you are with your testing, but presumably this was the physio team? A good physio will be able to pick up on problems (that you may not even know you have) just by looking at the way that you move.

I do know how difficult it is, but please try not to stress about it too much as it won’t help. I know a lot of people with MS that don’t have any issues with their thyroid at all (including myself) and it can cause a lot of strange symptoms (as you probably know ;-)).

See how it goes with your GP and let us know what he/she says eh?

Mags :slight_smile: xx

Thanks everyone for your replies.

I think I was well and truly in ‘panic’ mode when I posted, and have calmed down now. It was a case of having almost convinced myself that MS was not in the picture, only to then feel as if it might be more of a possibility than I had every previously thought.

I do tend to over-analyse every comment made by any medical professional etc at the moment, and do need to learn to calm down and just deal with what’s going on at any given time!

Please don’t think that just because I may have a thyroid problem I think I have MS, it was just another little piece of info flitting around my over-sensitive mind, adding 2 and 2 together and making at least 6!!!

Off to follow-up with Neuro in a minute, so I shall concentrate on that for now!

Thanks again for your replies. I knew I could rely on this forum to make me see sense!

Don’t worry purple. I’ve become an expert at making 2+2=6 lately! How did your follow up go?

mine started on my left side, but my right side is quickley catching up. Its the cold that makes me worse. I hope yesterday went well for you.

Its easy for somebody to say, try not to worry, but what i find easier to accept, is to try and take everything in my stride and not to try and think of everything all at once.

takecare

Catherine xx

Hope neuro went ok. How are you feeling today? A

Hi everyone, and thank you for your lovely replies. No further forward after follow-up with Neuro yesterday. Apparently, all my heart/bloodflow/blood clotting etc tests were normal, which means there is still no explanation for my multiple brain lesions. I have to wait until mid-January now to see another Neuro. He did say that ruling things out is a good thing as it narrows down the possibilities! So, still well and truly in Limboland, but at least I know I have a healthy heart etc!!

Have they not done a lumbar puncture, as you say you have multiple brain lesions and yet no answers as to what they are? X

Purpledot - don’t panic about that, a good physio may have just noticed awkwardness and was confirming what they’d seen. The heat never got mentioned by the spinal unit who saw me first, that didn’t get discussed til I saw a neuro.

Try not to 2nd guess it all, I don’t think the heat (Uthoff’s) is purely an MS trait either, especially if it’s been going on for years.

I don’t think you’re paranoid at all, I dismissed all of my symptoms prior to diagnosis as I could see reasons for everything. The only thing that confused me was vertigo and even then, the optician referred me on to an opthamologist, so again I could see a connection. I truly believed I had a trapped nerve so I was completely unprepared.

I hope there’s no serious thyroid issues and you have any necessary follow up but don’t drive yourself mad over it :slight_smile: It sounds like you have a good physio there, it was my Osteo that wrote to my GP saying I needed an MRI and that’s how I ended up at the spinal unit.

Sonia x

Not had an LP, as was referred initially to a vascular Neuro/stroke specialist because the lesions apparently appeared more ischemic in nature. As this has now been ruled out I am now seeing another Neuro in January to continue being investigated. Yes, Sonia, I do think I have a good Physio who is determined to sort out my balance. I see her at the local Day Hospital once a week, where I also see an OT and a Nurse, so I am being very well looked after. Just wish I felt better so I could appreciate it a bit more!!!