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Dystonia or MS?

Hi. I’ve suffered from Dystonia for 17 years. MS was questioned when I was 13 (im now 29) but ruled out with no tests as far as I know. They originally thought my Dystonia was linked to my epilepsy but this has since been proved not to be the case. In the past 17 years ive tried every drug possible to treat dystonia but nothing has worked. I tired Sinemet for Parkinsons but that also didnt work. Ive been looking at RRMS online and my symptoms fit that exactly, even down to the bad eyesight (im at the hospital in 2 weeks for that). Just wondering how many people were misdiagnosed, whether RRMS seems to fit my symptoms or if after 17 years they are more than likely have got to the MS diagnosis by now. Im looking at anything else it could be besides dystonia as they now class me as untreatable and im getting so much worse that I worry in the next 5 years ill be wheelchair bound. My symptoms are weak/numb left side Migraines Involuntary muscle spasms down my left side Struggling with speech. I’ve had MRI tests and lumbar punctures done in the last year but they werent looking for MS in either. Hope this makes sense! Gemma x

Hi Gemma If you look in Everyday living and go to page eight I had a thread titled Tonic Spasm different spasms were discussed there including Dystonic Spasms. It probably doesn’t give you definitive answers but nothing about MS does. By the time you read this the thread could have gone to page nine. Can you explain what Dystonia means for you and how it affects you? I see you have tried various medication and non have worked but do you continue to take Meds to control things? Lots of us only take meds for our symptoms as there is no medication to treat our MS. Best wishes Jan

Hi thanks for your reply. I will go take a look at that post. My symptoms used to be infrequent but manageable. Since the birth of my 2nd child (nearly 3 years ago) its like theyve just changed. The severity differs every time (ive just had 3 weeks of not being able to use my left side) which is not good as a single mum. I constantly rely on family and friends for help. The panic attacks and anxiety from not knowing when the spasms will happen or how bad they’ll be is getting out of hand. I see a psychologist to help with that. My consultant took me off all dystonia medication (i think i tried about 10 lots over 10 years as nothing worked) and i now only take epilepsy medication. I feel like its getting out of hand and at 29 im just not ready to accept another “theres nothing we can do for you”. Im sure he’ll laugh off the MS suggestion but to me it just makes sense. Gemma x