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Next Step?

Hi everyone

Posted on here a few times and really appreciate the support…but I’m now at the point where I don’t know what or where to go from here. Any advice would be appreciated!

Symptoms started last July while on holiday. Started with tingling in both legs and UTI. After taking antibiotics I felt fine for about 3 weeks then symptoms started again, tingling in legs, right side of face, sore wrists, waking up with a numb big toe and arms, weak arms, right leg just doesnt feel right, blurry vision in right eye, severe lower back pain and pain in legs. These are all intermittant apart from the blurry vision.

I’ve had brain, cervical spine MRI, lumbar pucture and VEP all clear. Referred to eye clinic, no sign of Optic neuritis but on second visit have said there may be something wrong with the eye muscles so being referred to another specialist. The last letter from Neuro was one sentence “lumbar puncture and VEP shows no sign of multiple sclerosis” which I was really pleased about but…no follow up??

I’ve been back to the GP as I was in so much pain with my legs, he prescribed Amitriptyline, so hoping that kicks in soon!! I just dont know where to go from here, I’ve never had a lower spinal MRI and it seems like the neuro has discharged me. I’m now 8 months down the line and not sure if I should be asking for a lower spinal MRI or if I should give it more time?

Thanks for listening, wishing you all well xxx

Hi

I’m no expert but have been in the same predicament. I left it initially and just got forgotten. Unless you keep bothering the GP, they sit back and think you’re all better. Be a nuisance if you have to, they don’t know what’s going on without your input.

Hope this helps.

Min

If your legs are a big problem, then I would think that it would be worth pushing for a spinal MRI, if only so you have a complete baseline for any future scans.

However, the fact that you have symptoms in your arms, face and eyes, but your cervical and brain MRI were clear, suggests that the spinal MRI will be clear too. In other words, that the thing causing your symptoms doesn’t show up on MRI. [This is because the neural pathways for the arms, face and eyes are covered by cervical and brain scanning areas.]

There are plenty of neurological conditions that don’t show up on MRI, but to get them properly investigated will mean seeing the right neuro and I’m afraid I wouldn’t know what to suggest other than to ask your GP who might be the best person to see locally. Perhaps a really good general neurologist? Or maybe one with interests in infection/virus-induced neuropathology, if that holiday UTI was a symptom of something more??

As Min says, we do have to keep reminding (some) GP’s that we need help and we want answers. These days, it’s those who ask who get :frowning:

Karen x

Hi, amitriptyline helps enormously with nerve pain in my legs. But the dosage has to start low and be gradually increased. I went from 20mg right up to 100mg before it zapped the pain. That was back in 2000.

I now take 75mg at night. I tried less, but the pains came back.

I used to see a neuro every 6 months and had several repeat tests. I presented like PPMS. Only last year was MS discounted altogether.

My diagnosis is spastic paraparesis/cause unknown.

I still see neuro every 12 months.

I think you should too. They need to find out what is causing your problems.

luv Pollx

Thank you for all your replies :slight_smile:

Ok think a trip back to the GP it is! I’m only on 10mg of Amitriptyline at the moment, been on it for 3 weeks but no improvement yet. Maybe I can ask the GP for a stonger dose.

Karen, I’m definitely going to ask about the best person to see locally, and bring up the fact that this started abroad after food poisoning and UTI! They already know this but think I need to push this more.

I also forgot to mention that I get intense burning just under my breast bone and on my back. This comes and goes also, not sure if this is common with MS or not?

xxx

Burning is a very common type of neuropathic pain that a lot of MSers get. Meds like amitriptyline and pregabalin can help a lot with it. Ice packs and, rather unintuitavely, heat pads also help some people. The trick is to drown out the fake signals with some real ones. Distraction is good too - playing video games, watching movies, a really good book, etc.

Kx

Thanks Rizzo, sorry for the late reply. Had a few days away which was a nice break from everything!

You’re right, everything’s a lot worse when I’m sitting doing nothing. Burning has gone…for now. Everything comes and goes so quickly. Today I’ve woken up and right arm is slightly weak, but I know it will be gone tomorrow. Our bodies are strange things!

Hope everyone is doing as well as they can be :slight_smile: So pleased I found this forum, definitely don’t feel alone now.

xxx

Thanks Rizzo, sorry for the late reply. Had a few days away which was a nice break from everything!

You’re right, everything’s a lot worse when I’m sitting doing nothing. Burning has gone…for now. Everything comes and goes so quickly. Today I’ve woken up and right arm is slightly weak, but I know it will be gone tomorrow. Our bodies are strange things!

Hope everyone is doing as well as they can be :slight_smile: So pleased I found this forum, definitely don’t feel alone now.

xxx