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Undiagnosed MS - advice and your opinions please?

Hi everyone. I’ve just joined with so hope of becoming more informed about MS and it’s symptoms ,diagnosis and treatments. Firstly can I give you a little background. I firstly had a a period of about two weeks of vertigo on/off , predominantly at night and in the morning but occasionally in the daytime too. I put this down to dodgy blood pressure. This was coupled with a couple of weird sensations like bugs under my skin in my hands but thought nothing of it. This was about 4 months ago. The at the end of March my middle finger in the right hand went numb. I tapped away thinking it was a circulation issue but nothing happened. About 29 mins later my whole finger went kind of white, then blue, then very tingly which lasted about two hours. That night I got a burning sensation in right leg. I was worried I may have had a blood clot working it’s way around my system so called NHS direct for advice. They sent me to out of hours doctor who said all was well but to get checked out by my GP. A couple of days later I saw my GP, who is superb, and she did lots of tests and sent off for various bloods, diabetes, count, deficiencies, etc etc. they all came back within normal range and she said she thought I could have the onset of MS and therefore ordered a brain MRI. I’ve had the MRI which was normal so she has referred to a neurologist. Since the “finger” episode my symptoms have become worse. I know have pretty much constant pins and needles in my hands and feet. I have numbness in my hands and feet but kind of small patches, like the left of my palm and little finger, or just the heel of my foot. The pins and needles sometimes go up higher towards my calf in my leg. I’ve also had tingling and numbness in my lips, top and bottom lips on different occasions. I too have “electric shocks” all the time bug not just in my hands and feet, although it’s predominantly there. I’ve felt shocks in my chest, bowel, shoulder etc. I’ve also just started again, in the last week, with vertigo again. I reported my change in symptoms to my GP who prescribed amitriptyline which has “muted” the shocks/pins and needles a little but I can still feel it. My GP said she didn’t think it was MS now as it’s all over my body and thinks it’s something else neurological, periferal rather than central nervous system. I had these symptoms for 7 weeks now. I’m not a stressful person but obviously like to be informed so I can smoke sense for conversations with professionals. So information is good as far as I’m concerned. I’m conscious that I’ve only had a brain MRI and demyelination can occur in the spine which has not been scanned. Only other things to mention is that I hv hypothyroidism and take levothyroxine for it. Also have degenerative disc disease but don’t have treatment or medication. I have some questions for all you seasoned, experienced members please. Do my symptoms sound like MS type symptoms as my GP said it’s probably not that? What other conditions could I research that are similar to MS? Are my symptoms consistent with spinal demyelination as my brain MRI was normal? When do you know when to stop taking the amitriptyline , as you may not be aware of symptoms with this medication. I’ve had symptoms for several weeks, should I expect I them to subside, what’s most common. I would welcome your words of advice, experience and wisdom please. My very best to all you out there that deal with this condition on a daily basis. Kindest regards. Viv

Hi Viv, as you have pre exisiting problems such as your degenerative disc disease these I think can cause similar symptoms to ms. I would be unwise to comment much on your condition.

Keep a diary of all your symptoms and discuss these with the neurologist (type them up on a piece of paper). Give them a copy of these symptoms when you leave your appointment so they have them for reference. Discuss having a spine MRI too.

If your neuro appointment is not in the near future ask your GP to chase this appointment so it is sooner. Hope you get some answers soon. Take care x

Sorry Vivi,

But I agree completely with what Helebon says !!

Only medical pros (Neuro/GP) should be assessing you. There’s physical clues that a person just cannot see/feel over the internet. (…and sadly, there’s quite a bit of bullsh*t on the web too), so just trust the experts to find out precisely what’s wrong!

Good luck !

Dom

Hi Viv, There are sadly so many symptoms that can be MS. MS is usually dx’d by ruling out what it isn’t. A couple of tests usually ran to rule out first are Lyme and Epstein Barr. Basically the battery of blood work your GP most likely did. The neuro will do his/her own set of tests next. And most definitely the journal of symptoms is an excellent idea. While your brain MRI may have came back clean, that does not necessarily rule out MS (sorry). By any chance did it include your neck vertebrae? Some of your symptoms could also be a pinched nerve, not all obviously, but some. I would make sure you have any future MRI’s (of the brain or spine) include picking up on discs that could be pinching nerves along with showing any possible lesions. You can try going off the amitriptyline and if you’re in no more pain - GREAT!!! Still keep the neuro appt for the other issues. If the pain is still there or comes back - get back on them! You’ll know whatever caused the issue did not go away and is unfortunately going to need the neuro to look into. (if it is gone/comes back - make sure you note it in your journal) There is no such thing as ‘typical’ MS symptoms or a ‘standard’ path. So keep your appointment with the neurologist and keep up the journal! Good luck!! Tracy