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Newbie being checked for MS

Hi

Newbie here, just starting the diagnosis process really (well, sort of started a few years ago but a combination of getting better and moving meant that it never really went anywhere).

Been having vertigo and strange sensations in my left arm and leg for the most part (though occasionally have had weird feelings in my face as well). GP tried me on some meds for the vertigo, then ran all the blood tests he could (in his words!), found nothing, did some nerve tests and has referred me to a neurologist. He (the GP) told me that it could be MS and wants to get it checked.

My original appointment was moved forward (without any further medical appointments or phone calls etc.) and is now in October. Not sure whether to be worried about that or thankful!

My vertigo isn’t constant, and having done some research it seems most MS symptoms should be there constantly rather than sporadically. Should I take that as a good sign? At its worst I’d feel a bit woozy all day (but not every day), and have some short severe bursts. (It has also gradually been going away, which I’m pleased about!) The other stuff is pretty constant, though the sensations can vary from pins and needles to a pressure feeling to feeling like my leg is vibrating.

This is getting to be a long post now, sorry!, but I’m trying to get it sorted in my own head as much as possible. I think my main concern at the moment is that I’m being a hypochondriac and that I’m making a big fuss out of nothing. Certainly, from reading posts here I don’t think I’m anywhere near as unwell as a lot of people that are also undergoing tests, particularly now the vertigo is happening less and less frequently. Consequently I don’t really want to tell anyone about it in real life, but also feel a bit guilty about posting here. I have told a couple of colleagues at work as I was really struggling last term (and they’ve been really nice and supportive about it) but other than that I’ve been avoiding talking about it. I’m not really sure why I’m posting even, but I’ve seen how supportive the forums are and I’m just feeling a bit lost I guess. Thanks to anyone who is still reading!

Hello and welcome, don’t worry about posting anything on here, that’s why we’re here! Every one of us has been through the process or are going through it. I know, for myself, I couldn’t have managed without the support people on here and the kindness of strangers is very humbling. I will be forever grateful to individuals who helped me through. ok, you have your appointment date and that is great news. I would suggest that you prepare fully as you would for one of your lessons as the appointment time is very short. Write down all of the symptoms that are bothering you. If it helps start with the worst and then work your way through to the little irritable annoyances. Try to stay calm, I know it’s worrying but the neuro will pay more attention if you are calm and to the point. If you can, take someone with you. It always helps to have another set of ears, Your neuro will take notes as you speak and probably do a quick set of physical tests. Don’t worry if he refers you for MRI, this is required to see the activity in your brain and spine. It’s an hour out of life in a noisy tunnel but it’s not uncomfortable. Please remember that life with ms goes on. The kids still fight, the shopping gets done and for me, life is better because I don’t take things for granted as much! I gave up teaching, but that was my choice as I wasn’t enjoying the job any more. Feel free to pm me at any time, I came out of limbo and joined the ms club in March tis year so if I can be of any help, I’ll do my best. Chis

Hello Dagny,

I just read your post and felt reminded of myself. Im also undiagnosed but have some strange symptoms and yet since they are not are as severe as what you and I have read here I also feel like a hypochondriac and afraid to post. I also dont want to make a fuss, so much so that I havent told any friends how I feel (only my husband) but then end up feeling alone with my symptoms. Anyway, reading your post and Chis’s kind reply made me feel less alone and bit more confident to post something of what Ive been expeiencing myself. I hope you get some answers and I hope of course that you feel better soon. Please do post how things go re your appointment in Oct.

Best wishes,

Caro

Hi Dagny, I really wonder about that, having come across a number of sources suggesting ‘paroxysmal symptoms’ (i.e. ones that come and go) are common in MS. I wish I could get a definitive authoritative opinion on that. Perhaps there is a widely held misconception somewhere.

http://www.unitedspinal.org/msscene/2008/11/18/paroxysmal-symptoms-of-mu…

http://ms.about.com/od/signssymptoms/a/paroxysmal_utd.htm

Bob

Hello, and welcome to the site

Chis has already given you great advice, so I don’t have much to add, but I did want to also say please don’t ever feel that you can’t post because you think your symptoms are milder than other people’s. It really doesn’t matter - after all, experiencing anything out of the ordinary is scary!

I also wanted to add that it is possible to have sporadic symptoms with MS (I have MS and a lot of my symptoms are sporadic), but there are literally hundreds of conditions that can cause similar symptoms, so try and keep an open mind - you never know, your symptoms could be caused by something relatively easy to fix or be a one off thing that never happens again.

Fingers crossed!

Karen x

I have just realised that I didn’t reply to your post about this. Sorry! I did read the articles, but then got distracted and forgot.

I’ve read them again now and, for what it’s worth, it seems about right to me, with one major exception: the “it will go away” bit, e.g. "These symptoms may last from a few days up to several months, but will eventually go away (Twomey and Espir, 1980). I totally disagree! For example, I started having tonic spasms in April 2010. Thanks to meds, they are well controlled, but I do still get them. If we include neuropathic shooting pains (what my son describes as me being used as a dart board), then I’ve been getting them for 14 years. Hardly temporary!

I am also a bit uncomfortable with the “don’t worry, it’s not a relapse” attitude. Some of mine have been precursors to a full blown relapse, and they’ve stayed with me since.

Although the citations in the articles are old, one of the things that I think is important to take from these articles is that these are symptoms that are caused by neural misfiring which is a result of existing damage. Therefore, someone presenting with fleeting symptoms in various places who has no history of neurological symptoms is probably unlikely to have MS.

I could be wrong though!

Karen x

Hi

Welcome to aptly titled limboland.

I have found it so helpful to be able to post here while I wait to hopefully get some answers, sharing here is safe and supportive.

Fee

Thanks for your input Karen. Sounds about right to me.

Bob

Thanks to everyone. I knew from other people’s posts how supportive everyone is here, but to see the same kind of response to my thread has made me close to tears (in a good way!)

I am keeping an open mind - I know there’s a very good chance that it’ll be something easily fixed, or that I’ll be lucky and not have another attack. I AM thankful that I’m being tested - it seems for some people that is a battle in itself - but it is scary when your GP turns around with something like this. Especially given that I’ve always hated going to the doctor’s to the extent that when I was finishing my degree it was a choice between going to the GP or almost certainly failing my degree, I was close to taking the ‘fail my degree’ option. Getting used to it already though - not sure what the big deal was!

The information about paroxysmal symptoms is very interesting - thanks for the articles and discussion. I have had at least 2 episodes of neurological symptoms before, which is why the GP went for the referral, but thankfully they’ve been relatively mild and I have recovered fully from the earlier ‘bouts’. There is a plus side to all this though - it’s given me the motivation to do as much as I can to keep healthy and subsequently my diet has improved massively since the first episode a couple of years ago. For the first time in my life I might even say I’m verging on being a healthy eater!

Well done on the healthy diet lettuce sucks doesn’t it! Let us know how you get on, Chis x

Hi Dagney,

I am also in the diagnosis process. I was diagnosed with vertigo 3 months ago which is constant. I have no relief from it at any time of the day and it has become something that I have had to live with. From my first appointment with the neurolgist he was able to tell me that it is not vertigo and there is high possiblity that I have MS although this was with results from my MRI. Hopefully your neurolgist will be able to make things a little clearer for you.

Hi Dagney,

I am also in the diagnosis process. I was diagnosed with vertigo 3 months ago which is constant. I have no relief from it at any time of the day and it has become something that I have had to live with. From my first appointment with the neurolgist he was able to tell me that it is not vertigo and there is high possiblity that I have MS although this was with results from my MRI. Hopefully your neurolgist will be able to make things a little clearer for you.