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Twanging sensation

Hi new to the group. Been finally told by consultant that he expects a diagnosis.of MS (symptoms for 15 years),but still need further MRIs and lumbar puncture.

Just finished some steroids to try and speed up recovery of numb legs and groin, but at the moment my symptoms keep changing on a daily basis. One weird one that I have not read about before is a feeling that someone has flicked an eleasti. Band and the vibration is inside my leg (or like someone has hit a tuning fork). Anyone else had this? Also struggling with what feels like a bloated stomach - like.it is full of air.

Thanks

hi JJ

welcome to the group even though it’s not one that you wanted to join.

i recognise those weird sensations (twanging and tuning fork).

i get what i can only describe as a “juddering” feeling.

what with elastic bands, tuning forks and juddering we have to admit that we are utter weirdos!

bloating is horrible, i found that my neuropathic painkillers caused it/made it worse.

the bowel and bladder clinic are wonderful and they would try to suggest ways to address the bloating.

ask your GP to refer you or you can self refer which is what i did.

make a timeline of your symptoms with approximate dates and take someone with you at your next appointment with the neuro to prompt you and help remember what is said.

good luck xx

Phew - good to hear I am not the only weirdo! Thank you for that

I am not actually diagnosed properly yet, got a 2 hr MRI booked in soon - bet they haven’t fixed a TV in the tube since I last went, and if they put on the same Tom Jones cd I will be having words with the DJ! Consultant is pretty sure though now at least, which is good,because my first symptom was Optic Neuritus 15 years ago!

Thanks again, from one tuning fork to another!

Hello

Yes, there are many of us weirdos here. You’re very welcome to our community.

Personally I find MRIs are better without music. Even good music. They are so noisy that you can hardly hear the music. Then again, I find them really quite hypnotic and often fall asleep in the tube.

I’m sure that once you do have that final diagnosis you’ll feel to some extent relieved to have a solid answer for all the years of relapses. Although don’t be surprised to feel a whole load of emotions with that diagnosis. Right now you’re undiagnosed, once you get that diagnosis, it can feel strange and depressing.

I assume that if the steroids have made a partial if not complete recovery from your last relapse that you’ll be diagnosed with relapsing remitting MS. This should mean that you can get some disease modifying drugs (DMDs) to reduce the number and severity of relapses.

Best of luck with these next few tests. I do hope you get your final answer soon.

Sue