I don’t know what to do next...

New diagnosis and before diagnosis
1

Hello

I’ve been having symptoms suggestive of MS for coming on around 2 years or so. Numbness/tingling/ twitching/body jerks/ burning/shooting pains in fingers and toes/leg pain and generally feeling crap.

Had a mri of brain and spine a couple of years back when it all started but nothing showed. Went back to different neuro a year or so later and he agreed to repeat some tests. Lumbar puncture was negative, VEP was negative and mri showed a single hyperintensity which was not related to demyelination. Since those results I’ve had continuing symptoms. Waking up with my leg solidly numb. Spasms, twitching and worse of all pain. I was getting used to all of that and then yesterday…I got to the bottom of a flight of stairs and I became aware that my legs felt odd, I carried on waking and my legs began shaking uncontrollably, especially if I tiptoed. (My partner filmed it) I got in the car and sat down but as soon as I lifted the back of my feet with just the toes on the floor by legs started bouncing up and down. I was petrified!!

Basically, I don’t know what to do from here. I have a follow up with neurologist in December but it seems ages away. He has a private practice too so could go and see him but I’ve got a million thoughts about everything. He told me when I got my results that MS is unlikely and even said I have only a 0.3% chance of having it, the same as anyone walking the streets. No idea how they work that out. I should add that this is not anxiety or stress related. I am a fully functioning working normal person with a normal life and no more stress and stuff happening then the next person. What happened yesterday has left my legs feeling like they’ve run a marathon. Just pushing my thigh or calf and it feels massively bruised. Im rubbish at being assertive and don’t see the point in seeing GP as I’m already under consultant care.

I properly feel like I’m banging on now but in my quest to try and bring reason and rationale to this, I’m wondering whether it’s worth getting my mri report re read by a different radiologist as maybe that white spot was related to demyelination. I really feel I’ve had such conflicting views from people I feel should be more consistent. I’ve had my GP who thinks it’s MS, a different GP who said she didn’t think it was. I’ve had a neurologist who said symptoms do not sound consistent with MS and a neurologist who said my symptoms sound suggestive of MS relapses. First neuro said my reflexes were normal, second neuro said they were brisk, third neuro said they were normal. I’ve got this all on paper with the letters they send you after appointments. Im scared and worried and don’t know what to do.

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go back to your gp and ask him what he thinks/thought of the letters from your neuro.

does he agree that they contradict each other?

will he agree to re-refer you?

i really hope that you gp can make some sense of it all.

carole x

3

Hello

Carole is absolutely right, ask your GP what they make of the contradictory letters.

To me, it sounds like the neurologists should perhaps be looking again, although MS is perhaps an unlikely diagnosis given the negative LP and VEP and an MRI not showing demyelination.

Perhaps what you could ask your GP if s/he could write to the neurologist, asking for your December appointment to be expedited as you are experiencing continued symptoms and given the contradictions in the opinions thus far?

The problem with seeing the neurologist at their private practice is that your existing results of tests are held on your NHS file, I’m not sure whether the neurologist would be able to access them in his/her private practice. If you fail to have your NHS appointment brought forward, you could phone the neuros secretary and ask if your records could be copied to his private practice.

Sue

1 Like
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Thanks for your replies. I’ve had a couple of days to think about it and have decided that I’m going to hang on until the 18th December when my next Neurology appointment is. I don’t want to come across as neurotic or some crazy health anxious mad person. The neurologist is see is an MS specialist from neurology hospital in London. The stupid thing is when I decide to switch to him it was because I was getting such conflicting opinions from the general neurologists I’d seen previously. I felt at the time that whatever he told me combined with test results I would have to trust and felt that i would be able to do that. But with these new symptoms I cannot do that. By the time I see him next it would have been over a year since tests were carried out, i can only hope that explaining my new symptoms and showing him the footage will perhaps mean I can have all the tests again…

My GP has become a bit reticent with me and as the results are not showing anything she says essentially I will have to ride this out. Isn’t it crazy how one person can have one case of pins and needles in a single finger for example and the results are conclusive for MS and then another person can have all sorts of neurological symptoms and nothing shows at all. I’m totally open to the idea that it might not be MS but my instinct tells me it is…