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In limbo, need someone to talk to

Hello, this is my first post. I have not been diagnosed with anything yet, and therein lies the problem. I don’t know what to think, but I feel some of my symptoms point to MS. I don’t want to leap to conclusions, but I feel a bit stuck and it’s difficult trying to talk to my husband as, if he can’t find an immediate solution to a problem, it is like talking to a brick wall.he just shrugs his shoulders and says he’s not an expert.

Over the course of the last 6 months my symptoms have got progressively worse:

  • L’hermittes sign
  • Continual tingling in hands, like a pre-pins and needles sensation, gets worse when washing up or in the shower
  • Tingling legs when walking short distances (has now moved up to my back and tummy area as well as legs)
  • I’ve always needed to go to the loo at lot but recently I seem to need to go every 15 minutes or so.
  • General feeling of feeling unbalanced, like I am leaning over to the side all the time
  • Blurry eye sight/blind spots in right eye
  • My right knee sometimes buckles so that I stumble when walking. For years I have always had trouble ‘going over on my ankle’.
  • Fatigue that hits me like a ton of bricks out of nowhere.
  • Stiff back in the mornings. I need to ‘limber up’ for about 1-2 hours before I don’t feel so stiff
  • Sometimes can’t think of the right word, or mispronounce words, or misread words when reading to my children

I’ve had some of these symptoms at least a couple of year on and off. At first I attributed them to being a mum of two young children, the tiredness and brain fog and so on, but what about the tingling and lhermittes? On 3 occasions now my physio has said he thinks I need to see a neurologist. The GP won’t refer me yet, but I have managed to get a refferal for an MRI of my head and cervical spine. It’s in about 4 weeks time. In the meantime, is there anything else I can do? I have the symptoms every day. I wondered if it could be a silent migraine? Would a different type of practitioner be of any help, like a chiropractor?

I don’t know what to try next. Obviously I will wait for the MRI but the waiting is driving me mad. I can’t escape the symptoms. I was prescribed Naproxen and that helps with neck pain but not the tingling sensations.

I worry about how these undiagnosed symptoms are going to affect my ability to look after my children…

If anyone has any thoughts on my post please let me know. Thank you. Sorry it’s so long.

Hi Misty.

I know how scary and isolating it can feel when we have all sorts of unusual things going on in our bodies.

I am a bit surprised that your GP is ordering an MRI, yet he wont refer you to a neurologist? Perhaps he will do that depending on the results of the MRI.

Best thing to do is keep a diary of symptoms, take as much rest as you can (yeh, hard with youngsters to look after…is there anyone who could take them for an overnight stay?) and try to pace activities.

It might be MS, but there are other things it could be too.

Hang on in there hun.

luv Pollx

Hi Misty Orchid,

Obviously nobody can diagnose over the internet but I will say your symptoms do require a Neurologist to see you ASAP.

My suggestion is go private; no referral necessary; costs about £250 for your appointment but this could be next week. Tell them on this appointment that all tests; hospital stays; drugs will be on the NHS; this is perfectly legal.

Going private means you can go anywhere but you don’t want a nasty Neuro; I suggest you ask on here for recommendations in your area.

I can’t understand why you have been referred for an MRI but not a Neuro? A GP cannot diagnose you with MS.

Good luck

George

Thank you for your replies Poll and George. I saw a different gp at my last appointment, to the one I first saw, i think, likeyou said Poll, she will refer me to a neurologist if the results of the scan show anything.

My husband helps with the children at the weekend and my in-laws when they can but they work full time so childcare is my responsibility, but that is my choice, I want to be there for them when they are young. The stiffness and tingling can make it trickier than it ought to be at times.

George, my husband suggested going private to me as well today, I will look into it. I assumed you still needed to be referred by your gp. Can you recommend anyone in the Bristol/Bath/South Gloucestershire area?

I just want to feel like I’m doing something. I get the sense my physio feels he can do no more than remedial work with me so I left my session last night feeling a bit flat.

Thank you for listening to me.

Hi again.

When I first saw my G about my mobility problems, she said she wanted to refer me to a neuro. She said there was a 10 months waiting list (this was in 1999, waiting lists are less now thank goodness).

I decided to go private and had an appointment 2 weeks later.

I saw the same neuro on NHS later.

pollx

Thank you. Unfortunately I put my back out on Sunday and its half term so I haven’t done any more to progress this but I will come back to it when I have a bit more time. My MRI is on 1st March so not too much longer to wait for that, at least, I suppose.