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Undiagnosed, unsure whether to investigate further

I am female, 28years old and have been having some strange symptoms for a few years and felt a bit lost as to who I could talk to, I found this forum online and hoping someone may be happy to talk to me. The last few years I have suffered with severe fatigue and tiredness, I’ve always approached it naturally as the doctors have only offered me anti depressants which I refuse (I am not depressed, although I may have felt like it some days). A year and a half ago I noticed numbness in my feet and hands, it was more intermittent, coming and going, along with tingling, a bit like pins and needles. I was referred to a neurologist, had an MRI and evoked potential test everything came back normal, so I just figured it was just extreme tiredness anxiety or circulation… Since then my fatigue has been up and down, I still get the numbness and tingling in my feet mostly but sometimes in the back on my legs and bum, I think it’s only when I sit or lay tho, but maybe I only notice it then. but gradually my legs have become weaker and weaker, it’s like walking with weighted legs, they ache and are so heavy, it’s such a difficult thing to explain, but it really gets me down I’d class myself as fairly fit but any.physical activity is like moving through sand. I have had a couple of other symptoms recently I have no idea if they’re related at all, I get this tightness in my arms, my right arm in particular, like it was burning on the skin but I didn’t have a rash or anything. Also I have what I would describe as an over active bladder, constantly feeling like I need to pee, it makes me drink less because I can barely hold any liquid in my bladder. I have no idea if any of this seems familiar to anyone else who has had an actual diagnosis or if I’m just being a total hypercondriac. My doctor wants to refer me back to the neurologist, but I just feel like if they did all those tests before and nothing was found are my symptoms anything to be concerned about to go on this journey again. I know this might sound stupid to some of you not wanting to see the neurologist again but I feel like I could just be wasting his time, I appreciate anyone’s thoughts. Thanks x

Hi Ocarina

I have many of those symptoms.

I think if your GP has offered to refer you for further tests I would bite his hand off. You would certainly not be wasting the neuro’s time. A lot of people find their GP’s dismissive of their symptoms and unwilling to take things further.

It certainly sound like you need further investigation. A referral to an MS specialist neurologist would be best.

Your previous tests coming back normal may be down to a couple of factors - MRI scanners have different Teslar ‘strengths’ so if you were scanned in a T1.5 for example it may have missed lesions that at T3 may have picked up. Sorry I can’t explain this better - we need George (ggood) to come along as he explains so well!

Also what did they scan? You need full brain and spine scans maybe with contrast to get the best idea of what’s going on.

MS is diagnosed after many different tests, scans, bloods, maybe LP, history etc.

I know what you mean about the weighted legs - I described mine as trying to walk up a steep mountain side with an elephant sitting on my back and tight steel bands around my hips, with concrete bollards chained to my legs just above the knees. Plus a voice in my head shouting HURRY UP, GET A MOVE ON, I HAVEN’T GOT ALL DAY TO WAIT FOR YOU.

Hi

I’d echo what Ang said. But add one thing to that. You may not have MS, but you could have something different. So having your GP involved is a good thing. Follow up with the neurologist. If you are retested for MS or another neurological cause, and the results are negative again, then you can talk to your GP about what else could be going wrong as there seems to be something not right.

Sue

well you’ve had good advice already but i’ll just add to it.

get referred to the bowel and bladder clinic (or you can self refer).

they are really good and have made my life more bearable.

good luck

Cx