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Other possibilities

Hi all,

So I have a neurologist appointment on the 18th, & whilst I am pretty sure it is MS, I’m wondering if there are any other conditions that I should be researching prior to the appointment? The reason is a) reading on here I can see the abilities of neurologists vary greatly & b) I’d like to have as many questions lined up prior to the appointment.

My symptoms include:

-something akin to an MS hug although not very painful

-numbness in a toe for 6 weeks

-dizziness/vertigo for 4 weeks (merry Xmas!)

-shooting pain on the side of my face, particularly in the cheek area

-pins and needles

-clumsiness

I have not experience any fatigue or vision problems (although sometimes it takes longer than usual to focus, but only split seconds). Nor have I experienced weak muscles.

Very, very scared and tearful because the GP said the only diagnosis he could think of is MS (again, not the best experience hence my wanting to be more in control when I see the neurologist).

Thanks in advance.

Hi Carol I’m sorry you’re feeling so scared athe the moment it isn’t a nice place to be.

Why don’t you just concentrate on your symptoms and how you are feeling. Let the Neurologist worry about the diagnosis after all it is what he’s paid for. Write a list of all that has happened and all that is currently happening this will prompt you when you speak to him/her. It’s great that you have no fatigue or vision problems, I find the more I worry about something that could happen the more likely I am to think It is happening.

Best of luck for the 18th don’t expect immediate answers though sometimes it takes a while.

Jan x

Well, I’ve seen a lot of people discussing here their misdiagnosis. I just want to have my ducks in a row so I can ask/answer questions as best I can. I have a list, dates, times, how long symptoms have lasted etc. but I wasn’t impressed with my GPs very quick assumption ( hadn’t even asked about all my symptoms) so I really want to be able to ask questions if needed. I’m doing it privately so I hope it won’t take too long. I’m a carer so MS wouldn’t surprise me, but I want to be prepared. It’s also a coping mechanism.

Hi there!

Your symptoms dont sound typical of MS, but the only way to go is to let the neuro do his job. It could be MS, but it could be a number of other things too.

Filling our brains up with info on lots of different possibilities is only going to confuse and tire us.

I know this from personal experience love.

I spent years having tests and repeat tests, and was thrown from pillar to post. I`ve seen 16 neuros and after being mis-diagnosed with PPMS for several years, I wear the following label;

Hereditary spastic paraplegia/cause unknown.

I know it is a scary time for you.

Try to hang in there and look after yourself hun.

luv Pollx

Hi carol,I think your GP shouldn’t be saying things like that. Your neuro will need MRI’s and maybe lumber puncture before even they can say MS so your GP is jumping the gun (a lot!!).

Maybe GP needs an MRI also if MS is all they can think off!

Even if MS is Dx it’s no the end of the world,some ppl have a mostly “normal” life. Everyone has different symptoms and different levels of MS interfering with their life. The guys here are very helpful also and usually someone here has the same or similar symptoms so can advise you.

I hope & pray you get good news on the 18th so try no to worry too much till you know you have a something to worry about for sure,look after yourself and try and be as positive as you can.

Terry X x

Hi Carol,

Totally agree with what has been said so far. I think it was irresponsible and premature of your GP to mention MS, as you are nowhere near being diagnosed with it, and there are at least 100 conditions that can present similarly, ranging from infectious diseases, to simple vitamin deficiencies.

I certainly don’t think it’s a good idea to try to research everything it might possibly be, in advance of your appointment.

Google is not such a great research tool when it comes to things like that, as it effectively only tells you what is most talked about - NOT what is most likely in your particular case.

As MS is a big, much talked about disease, all symptom searches tend to come up with that, and not with the dozens of lesser-known, less dramatic, alternatives.

Many a poster here has got themselves utterly convinced they have MS, based only on what Google says, and a few have had the decency to come back and tell us no evidence was found, or that they were diagnosed with something completely different. Others have just disappeared off the radar. One would assume that if they’d gone on to be diagnosed with MS, they would have liked to stay around. So although it’s not proof, the conclusion is they were probably diagnosed with something else too, and decided an MS forum was no longer the place to be hanging about.

I think you will only frighten yourself if you try to spend the next couple of weeks researching “everything” - especially using Google, as it always places worst case scenarios at the top.

It’s good to stay informed, but only when you have some definite leads - which, at the moment, you don’t - as there are so many things, both common and rare, it might still be. It’s impossible for a lay person, in just over two weeks, even to identify, let alone “research” the 100+ things it might be (I know the names of only five or six).

Try giving yourself a bit of TLC, and using (pleasant) distraction tactics, instead of spending the next two weeks in a hell of trying to answer questions only exhaustive testing will answer.

I do think it will be the neurologist asking you questions, at this very early stage, and you do not need to go armed with a list for them. I’m certainly not saying consultants are God (though some of them think they are!) and should never be questioned, but for the moment, at least, the ball is in their court. They will be on the evidence gathering mission, not you. Your part of the bargain is just to explain as clearly and accurately as you can what’s been happening, and to cooperate with any examination.

Tina

x

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