Forum

Symptoms/advice

Hi everyone,

For the past few months (since mid-April), I’ve been getting some symptoms that may be MS. It started with tingly hands
and feet. They’re also sore and really weak at times. I have some other symptoms (tiredness, light sore heads), but I
sometimes think I’m just being paranoid whenever I get another pain somewhere.

I’ve been to my doctor and got several blood tests (vitamin levels, blood sugar, thyroid, etc) and everything was fine there. His conclusion was that it’s probably nothing and will pass. When I told him I was pretty worried after looking online, he said he didn’t think it sounded like MS, but he would refer me to neurology if it would make me feel better. The waiting time is normally around 4 months, and he said I might not even be seen if the neurologist isn’t convinced. He assured me that since it isn’t starting with just one limb or one side, it’s probably not MS. Am I right in thinking that that doesn’t sound right?

I think I may go private for my neurology appointment. The reason I want a diagnosis soon is that I have a working visa
for Canada. Me and a few friends are planning to go over there for a few years. We’ve already
booked flights for November. If I get diagnosed with MS or something else serious, I won’t be going anymore.

Now, I’m not going to ask if this is MS, because I’m pretty sure the answer will be “maybe, but maybe not”, but I
do want to ask for advice on a few things:

  1. If I am already on the waiting list for a neurology appointment but want to change to go private, how do I go about it, and
    are there any good recommendations for the Glasgow area?

  2. After reading some of your stories on here, I can see that there’s a good chance that I’ll be stuck in limboland even
    if I do get seen quickly. If I don’t get a diagnosis for whatever I have before November, is it a bad idea to go ahead with my plans for Canada?

  3. Is there anything I can do in the meantime to help with my hands and feet? Any tablets (that aren’t dangerous if I haven’t been diagnosed with anything) that can help?

Thanks.

Hi, I went private for my first neuro consultation, as my GP said there was a 10 month waiting list…that was back in 1999.

You still need a referral from your GP to go private. I guess you may already know that!

If that`s what you want to do, then return to your GP and say so.

After that you can go back on the NHS.

Diagnosis can take a long time…not usually in a matter of weeks or a few months…although it has been known.

I would discuss your Canada plans with the neuro and see what his advice is.

pollsx

Hi Jose

I reckon you should see how long you’ll be waiting on the NHS before going private. If you’ve been referred by your GP, try phoning either the neurologists secretary or the appointments team of your local hospital and see if you can get an idea of how long you’ll wait.

Then, if it’s likely to be a long wait, see if the neurologist you’ve been referred to a) is an MS specialist and b) has a private practice as well as NHS.

If s/he is an MS specialist with a private practice, get your GP to do another referral, this time to the neuros private practice. Or if s/he isn’t an MS specialist or doesn’t have a private practice, find one who is and also has both an NHS and a private practice, and get your GP to refer you to that person.

This way, if the private neurologist thinks tests are warranted, whether or not they think it’s MS (and you are right, no one can advise you on that diagnosis without the tests and the neurologist), they could refer you back to their NHS practice for the tests. You may find by going down this route you speed things up a but don’t have to shell out for the expensive tests.

And in terms of putting off your plans to go to Canada, I think if you are feeling well when the time comes, I’d go anyway. Hopefully you’ll have an answer one way or another by then, but putting off the rest of your life in case of a diagnosis could be something you’d really regret in time to come. Equally, if you are diagnosed with MS, there is no reason why you can’t go. It might just require a bit more research and finding out what health cover you’ll have while away from the UK.

Sue

Hiya Jose,

At present; and it may get no worse; you have mild symptoms so don’t put off any plans.

Unfortunately, some doctor you have seen has recorded it somewhere. So going to that part of the world you must take out good insurance. I suggest the Post Office Insurance who will cover you for pre-existing illnesses; see http://www.postoffice.co.uk/travel-insurance/medical-conditions

You are doing exactly the right thing. See if someone on here can recommend a good Neurologist in Glasgow; some can be naff.

There’s nothing you can take until you get a diagnosis; otherwise you may take something that has nothing to do with your complaint.

You could try a diet, but the jury is still out on that one https://www.mstrust.org.uk/a-z/diet

I remember rolling along the inlet in San-Diego and there was a boy fishing. On landing the fish at the last second the fish jumped at the boy and embedded itself in the boy’s leg.

My mate I was with rang for an ambulance. Within 5 minutes it was there; do you know the first thing they asked this 12-year-old boy; “have you insurance” they checked and his parents did.

So after they got the fish out his leg and dressed it. I said to the Paramedic; “what would you have done if he did not have insurance”. He said “We wouldn’t be heartless; would have removed the fish but he would have to wait for the free ambulance that can take up to 1 hour.

Thankfully we have the NHS and no Trump, get insurance.

George

Hi Boudica, thanks for the reply. Yeah, the time I need is probably unrealistic so I’ll talk to the neuro about my plans and see what he/she says.

Hi Sue. Thanks for this. It sounds like a good plan - I didn’t even think when I was at my doctor’s to ask him if I was being referred to an MS specialist. I’ll phone my hospital and work it out from there. As for Canada, I’m just kind of preparing for the worst outcome, which is probably not the best attitude. I think I’ll try and go for it either way as long as I can figure out the health cover.

Thanks,

Russell

Hi George. Yikes - the idea of needing insurance for something like that is scary! Thanks for the recommendation for insurance. I’ll need to look into it more, along with looking at the rules for my visa (I’m pretty sure I answered some general health questions in the application).

I might have a go at a healthier diet - it couldn’t hurt either way. I’ve already made some changes recently (nothing major - bit more veg, lots more water) so might as well make more. Thanks for the article - interesting stuff.

Cheers,

Russell