Ive had blood tests and an mri so far .Everyone keeps saying to me ,including my neuro ,it could be lots of things causing my symptoms .
But what other things mimic alot of ms symptoms ? like all the painful spasms ,alot of numbness and tightness, weaklegs ,fatigue,burning etc…
Ive just been thinking and if my neuro says it is definately not ms as i have no lesions .Has gave me tones of meds to shut me up ,what else could it be ??
I hate it when people say sometimes our body just does funny things .Mine has never done it before and im nearly 30 (in 8 days :( )
Sam xx
Hi Sam, There are literally hundreds of other things - too many to list. I probably only know about half-a-dozen of the more common ones anyway. Unfortunately, I DID have MS. But I know that conclusion was only reached after eliminating more than a hundred other possibilities. These ranged from as straightforward as vitamin deficiency, to as serious as HIV - and everything in between. Tina
Hi Sam,
Tina’s right, there are too many possibilities to list. Your neuro may not have any answers right now but it doesn’t sound to me that he’s given up.
Have you asked him what he’s actually ruled out so far and where he intends on going from here? If you knew that then it might help you to feel that things were moving along.
My GP initially made a referral for me to see a rheumy - but 2 weeks after seeing my GP my symptoms became even worse so I went back, he said I was displaying more neurological type symptoms so referred me to a neuro instead. Six months later and after a battery of tests I was dx with ms. Sadly it’s not so quick for everyone.
When do you see your neuro again? Has he lined up more tests or is he taking the wait and see approach at the moment?
Debbie xx
Hi
I do understand how you feel.
As far as frustration with your consultant and lack of a diagnosis Ive felt like that for a long time. But as more and more time passed I did come to understand grudgingly that there seem to be thousands and thousands of neurological mimics, it boggles the mind.
https://www.neurology.wisc.edu/publications/2007/neuro_2.pdf
The link not only highlights mimics but why neurologists have to take many things into account when diagnosing like conditions which sometimes have dissemination in space but not time, that sometimes have dissemination in time but not space, which often have dissemination in time/space.
See, mindboggling lol
Don’t get me wrong, I am very frustrated and wonder why neuros wont just make an informed decision with the best information available and let people get treatment and support and most importantly, get on with their lives. But after all these years the frustration became tiresome so I get on as best as possible
I do take issue with your neuro saying you definitely don’t have MS due to lack of lesions, that is just wrong information.
People generally mean well by saying such a stupid thing like was said to you. I think its a misguided attempt to make us feel better : /
Best
Tu
My neuro asked me to email him about how I’m getting on with the pregabalin ( on 300mg now) after 2 weeks which I did on Monday , no reply yet . I think I’m frustrated as he said not ms cos no lesions and in his words he doesn’t know what’s the matter with me . So to try the tablets and see how I get on and another cervical MRI in 10 weeks to check my prolapsed disc . So I know he’s doing something but I just feel like there must be more tests for other things he could be trying . I think he’s just waiting and seeing what happens . Everyday I wonder what else I’m going to wake up with next ! The frustration of being left to get on with it is driving me mad! At the moment I’m laying in bed as my legs are burning do much with painful spasms , my face feels like I have ants crawling under the skin , my scalp and nose are numb . And I’ve just broke out in what seems like a rash under my skin all over my face , loads of bumps under the skin . Not sure if it’s a rash or spots caused by my meds maybe , I don’t no . I’m just having a bad day I think today . Sorry for having a moan Sam x
Hi
Don’t worry about having a good old moan.
I would consider reporting the rash to your GP and your consultant, perhaps take a photo? All information is useful information and some MS mimics do have skin rashes as signs.
Hope you feel better soon.
Tu