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Very concerned

Hi everyone,

I’ve felt ‘strange’ for some time now. I’ve had Ulcerative Colitis for about 10 years…comes and goes…but at the moment its not too bad. My head has been feeling weird …lightheaded and dizzy and feeling quite ‘detached’ for a long while now…I used to put it down to the meds that I was on for my UC. I no longer take them and haven’t for over a year…so no that. I am now going through the meno…(no periods for nearly two years) maybe its that…I also have tingling in my feet and hands…and often wake up with numb hands. I was referred to the Orthopedic who sent me to occupatin therapist to give me slpints (they thought carpel tunnel or raynaulds). I also had pain in my foot…and I found out after xrays that I had a spur on my foot…which was treated with cortison injection.

For all of this I have been seeing my UC consultant who referred me.

A few weeks back I felt so unwell that I went to my docs…(who I NEVER see) I was made to feel that it was all in my head and that I was going through a phase. He sent me for more xrays and physio. I had the xrays last week, I went to my docs yesterday…again he made me feel like it was all in my head.

Iam very worried…he isnt…he said to me ‘are you worried its ms’ I said ‘I dont know Im not a doctor’…he also said he doesn’t think it is.

Some of my symptoms are painful feet…especially one of them which feels like someone is twisting it. Tingling in hands and feet…numbness in hands sometimes on waking. Detached, dizzy, lightheaded, drunk feeling. Feeling like Im gonna faint when I go out. Stiff fingers …weakness in legs…like they don’t belong to me…strange feeling all down left side…to name but a few.

HELP!!!

I

Hello, and welcome to the site

Not sure why the GP was sending you for x-rays? Why does he think that it isn’t MS? Why did he mention MS anyway? What kind of “phase”? Lots of questions! Rather unsatisfactory that a GP is ruling out a neurological disorder when they aren’t really qualified to do so. I suppose they have to play gatekeeper a bit otherwise neuros might be swamped, but it’s only right that symptoms are investigated properly.

The problem with MS is that it can cause literally any neurological symptom which means that any weird thing can sound like MS when it might not be. Did that make sense?! What I’m trying to say is that while your symptoms may be found in MS, they could easily be the result of something else. The only way you’re going to know is to see a neurologist and have some tests done. If your GP is being unhelpful, then maybe your UC consultant can intervene?

In the meantime, have you had your vitamin and mineral levels tested by your GP? For example, vitamin B12 deficiency can cause all sorts of neurological symptoms.

Stick to your guns with your GP. If he refuses to refer you, the least he should do is give you a proper explanation!

Karen x

Thanks for this…

I am still getting all the symptoms…some are worse on some days …but Iam never free of feeling ‘strange’.

I have got my neuro appointment for early Feb.

Went to physio and he just told me that he needs to speak to my Doc. before he can do anything…Docs away now until after Christmas…so have got physio in the New Year…

I just need some answers …

Hi Wendy and welcome

Not sure what to make of your Doc really - as Karen says it sounds as though he’s trying to rule out stuff himself which is fine in some instances but clearly this is outside his expertise! He’s not a specialist.

It took a very long time for me to go to my GP about my symptoms - years in fact. I then started to see a chiropractor - for injuries I’d sustained in an accident - and it was he who I confided in about everything that had been and was going on. He (eventually) managed to persuade me to go to my GP. I’m glad I did. He initially referred me to a rheumy but I was back at his surgery within a couple of weeks with yet more symptoms so he changed the referral to see a neuro instead. He was spot on - 6 months later I was diagnosed with RRMS. But it’s not always as simple as that - as you know.

It’s good news that you now have a neuro appt - keep brief notes on your symptoms and take them with you, go through them with him.

Fingers crossed he’ll nail the cause of your symptoms on the head, but it may not be straight away and he may even refer you to someone else if doesn’t feel it’s neurological. Only time (and tests) will tell.

Good luck - will you let us know how you get on?

Merry Christmas

Debbie xx

Hi Rubina,

Thanks for posting.

Today has been quite bad…I have had an ache in my left arm and shoulder and my hand sometimes doesn’t want to do what I want it to!

I feel like no one understands how I feel…I don’t really understand it myself!..Weird.

Yes I will let you know how things go…Thanks again.