Possible MS? Really worried after GP visit...

New diagnosis and before diagnosis
1

Hi.

I’m sorry to bother everyone, there are probably loads of these posted every day. I am just really concerned about my symptoms and I needed to talk to someone.

First of all I had a slight numbness/pain in one hand (left) and the arm felt a little weak. It came on with a chest pain and the GP thought it could be my heart. I don’t know if that’s related to my other symptoms or not?

Anyway, then the left side of my jaw went numb for a bit. The numbness isn’t constant, it moves around. Sometimes it’s not really noticeable, sometimes it makes my mouth feel like I’ve just been to the dentist and had it numbed for a filling. Also it’s in different bits of my face - my jaw and chin or my nose or up by my eye. It moves around. My mum had a similar thing and her’s turned out to be migraines…

I’ve also been feeling dizzy. Just kind of off-balance, not like the room is spinning or anything.

The GP I went to said she didn’t know what it was so she sent me for an MRI (for peace of mind, she said) and referred me to a neurologist (I’m still waiting for an appointment with the neurologist but I had my MRI on Monday). Then I got a ringing in my left ear, so I went back. The GP (a different doctor) I spoke to then ignored the ear and looked at my records and told me what the first GP was checking for with the MRI was MS. He asked if I knew anything about it and I said no, then he proceeded to tell me how not all people who are sent for MRIs have MS, some come back negative. He told me how life-changing and serious it can be but when I tried to ask him more he just said there was no point talking about it (he was the one who brought it up!) because I would have to wait for the results of my MRI, which would take at least 10 days. Before that he couldn’t say if it was MS or not. Then he told me not to worry (!?) and sent me home, with no actual information about what he had said.

I had never thought about MS, but now he’s mentioned it, I’m really scared. It feels like there’s something hanging over me… I keep telling myself not to worry, he didn’t know what it was and the GP couldn’t diagnose MS anyway but he made it sound like it was really the only explanation for my symptoms. Now it’s all I can think about…

Can anyone give me any reassurance? How do I cope with waiting for the MRI results? Are there other explanations for my symptoms? I don’t know anything about MS and I don’t know if it’s a good idea to look it up in case I just freak out and convince myself I’ve got it…

Sorry for this message, I just felt like I needed to talk to people who understand what I’m feeling. And sorry for posting here. I don’t even know it’s MS…

2

Hi Sally

What a horrible GP appointment. I’m not surprised you’re all in a bit of a state about it.

So at this point you don’t know what the results are of the MRI, maybe MS, maybe a one off thing, maybe a virus has caused the symptoms, maybe something else entirely.

And the only person who can a) interpret the MRI and b) give you some answers and if necessary, drugs is a neurologist. And you don’t even have an appointment with that neurologist yet.

Do you have the name of the neurologist you were referred to (maybe give your GP surgery a ring and ask the receptionist if there’s a name?) Not to worry if you don’t know, it can sometimes help, that’s all. Phone your local hospital (assuming that’s where you were referred) and ask for the appointments/waiting list team. Ask them if there is an appointment booked as yet or if they have the referral. If the appointment is miles away, ask if there’s any way they could bring it forward, maybe a cancellation? If they can’t, or they don’t have the referral yet, try to get hold of the neurologists secretary/admin team and check that they have the referral from your GP and ask if the appointment could be as soon as possible. Obviously the way to get anywhere with each of these people is to be as nice as possible and tell them how worried you’ve been made by the GP.

Then once you have the neurologists appointment, you can maybe get some answers. If you find at that point that you do in fact have MS, it’s not the end of the world, there are lots of drugs you can get that should ward off relapses and you might find that the impact of your life is not as catastrophic as you feel at this moment in time.

Sue

3

Hi Sue,

thank you so much for taking the time to answer! I’m so sorry for taking up your time when I don’t even know it’s MS, I am just in a real state about it and can’t talk to my family - I don’t want to worry them.

I took your advice and phoned up the hospital, they said the waiting list for neurology was 12 months, so I wouldn’t get an appointment before next September (which made me even more upset!). I’m now looking into getting referred privately and they say I can get an appointment possibly by next Wednesday (which is a lot better).

Can you recommend any questions I should ask the neurologist? Is there any chance they might miss MS on the MRI? If the MRI shows it might be MS, is that a definite diagnosis or will I need further tests?

The GP made it sound like a definite thing that what was causing my symptoms was MS. But the GP doesn’t actually know? There are other things that could be causing the symptoms? Thanks for telling me that, it made me feel a lot better. And even if it is, it isn’t necessarily as horrific as the GP made it sound?

Sally xx

(And thank you again for answering! I just want to give you a massive hug!)

4

Hi Sally

Thanks for the massive hug. Same to you.

So, if you have a private appointment, is it with the same neurologist? I.e. will the person you see be able to see the MRI you’ve already had? It’s disgusting really that the wait for NHS appointments is a year. That said, many people do start out seeing a private neurologist and then transferring over to the NHS.

I can’t really answer too many of your questions regarding the MRI, it will depend on exactly what kind of scan you had, the grade of the MRI machine and whether there was a contrast dye used to enhance the images.

Often, what the MRI shows (when a person has MS) is lesions showing where there’s been inflammation. Have a look at the sticky post at the top of the list of threads for a lot of info re MRIs it was written quite some time ago by someone called Rizzo and it’s brilliant, if slightly detailed.

The neurologist might be able to use the MRI together with your history of what’s happened to you plus a physical exam and be able to diagnose MS, or rule it out, or diagnose something else. Or he/she may need to do further tests. Some other tests used to diagnose MS are typically a lumbar puncture (LP), which is where they basically extract some spinal fluid with a needle and examine it to see if it has certain markers that indicate demyelination. Plus / or a visual evoked potential (VEP) which is a kind of sight test.

You are right, the GP may think it sounds like MS, but they absolutely don’t know. Only the neurologist can diagnose MS, or of course, tell you that it might be MS, or tell you that it might be something else entirely.

What I’d suggest taking with you is a detailed list of what has happened to you that could be related. Together with how long symptoms have lasted and some idea of dates. That’s probably going to be most helpful.

And as for what to ask, to be honest, that will entirely depend on what the neurologist thinks based on your MRI, history and physical exam.

As I said before, if it is MS, there is a world of difference today than 20 years ago when my MS started. There are loads of disease modifying drugs, many of which can pretty much halt the disease in its tracks before it does too much damage. So it really isn’t the end of the world, or of your life if you do get that diagnosis.

Best of luck with it.

Sue