undiagnosed and anxious

Hi Ive been reading lots of threads on the forum to find someone with similar symptoms but I guess that’s what im learning about MS it affects people differently. I started with pins and needles in June kept ignoring them as I thought it was positional. I mentioned it to my running coach sports physio the day before my second marathon. They were annoying but not painful, both the trainer and physio laughed at me. Towards the end of sept I visited my GP with my husband as the pins and needles continued but I also had tightening at the top of my legs and what I can only describe as an intense pressure across my pelvic bone which lasts approx 45 secs. they vary how many times and how often. I was referred to a neuorologist but prior to the appt i entered a half marathon in palma. The temp was 30 degrees and i passed out just before 10k I had had burning pains in my left toes making it difficult to run. The neuro said it was anxiety and prescribed progablin and MRI scans. I tried the medication but over month didn’t help. The tightening sensation eased but I still had pins and needles. In January another neuro looked at the MRI and found bulging discs at the bottom of my spine but wanted a further scan at the top of my back which showed inflammation. I then had a lumbar puncture on the 9th March. The tightening returned mid feb and also a pressing on my stomach with pins and needles. I also am getting pins and needles over my back making me feel cold. I can have difficulty walking for miniscule periods of time and end up limping. At present I cant run or ballroom dance. I had optic neuritis 7 years ago and my vision gets worse when im tired, ive always been blind in my left eye. This last week my 2 middle fingers have gone numb for short periods. Im waiting for an appointment for a formal diagnosis but have been told MS is highly probable. I guess my worry is if it is but also if it isn’t what is it? Thank you for reading I hope someone can help and advise

hi bb

your diagnosis is going to happen and whether it is or is not ms, i’d advise you to cultivate a relaxed outlook.

once you have a diagnosis then you may be offered treatment.

maybe use this time, reading up on the different treatments available.

you sound highly active and fit as a fiddle (compared to me being a sloth).

you will still be the same person but maybe with extra quirks!

good luck

carole x

Hi bb, if your diagnosis happens to be MS, it’s not the end of the world, you will adapt. When you see the neuro, & if the dx is confirmed, he/she might talk to you about DMD’s. These drugs are designed to reduce the amount of relapses you might have in the future & to lessen the severity of them.

Now would be a good time for you to acquaint yourself to these drugs, ahead of your neuro appointment. Also keep a note of the symptoms you have & any new ones that may occur.

As for the trainer & physio laughing at you they seriously need to be educated!

Good luck

Rosina x

Thank you Carole and Rosina for your encouragement and advice. You’re both right I need to research treatment so I can be , ore informed. Thanks again x

Hi ive just received a letter from the neurologist stating that my LP was clear ttherefore I dont have MS. Please understand I am really pleased however there’s always a but isnt there? If MS is not the diagnosis then what are the symptoms ive been experiencing? The pins and needles that come and go in my legs and stomach, the tightening in my stomach and the severe burning across my stomach that makes it difficult to get your breath. When I experienced similar in October last year I didn’t let it stop me running/walking /dancing although I was slower and didnt do as much but because I had been told it was anxiety I was determined (and still am) to carry on living life to the full. Since the symptoms came back in February they have been harder to beat and I last ran on the 16th feb although I did walk 8 miles last weekend in the Lakes but when the tightening came I had to use a walking pole as I limp (they last for less than a minute). Has anyone been through similar or can offer any advice? Ive now been discharged from the neurologist but have a GP appointment on Tuesday. Thank you for reading.