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The UKFibromyalgia Forums • View topic - Advice needed please.....



Advice needed please.....

Any tips on what helps you including alternative medicine.

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Advice needed please.....

Postby mnmc2004 » Fri Sep 21, 2012 9:22 am

Has anyone ever had or heard of gradual loss of muscle control (right leg) and sudden (Instant) loss in the left leg 2 years after.
Pins and needles constantly and concentrating when pressure applied, no feeling except for the pain concentrating in the spot touched. Loss of control is from top of thigh downwards. Nerve Tests, bloods and brain/leg MRI all clear so the consultant is saying 'Its the Fibromyalgia get used to it' which is becoming the story of our life but our GP has done some home work and doesn't think its the Fibro??
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Re: Advice needed please.....

Postby denys » Fri Sep 21, 2012 12:21 pm

Difficult one if your GP doesnt think its FM related does he/she have any idea what it is?????? I get the pins and needles and the numbness but I dont think its to the extent you seem to be suffering with :-? :-? :-? :-? :-? :-? :-? :-? :-? :-?
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Re: Advice needed please.....

Postby mnmc2004 » Fri Sep 21, 2012 4:48 pm

Hi Deny, Thanks for replying...

Our GP doesn't know, he's only read up on FM since we joined the practice, when the first leg started going it started in her foot and worked upwards and at that point the GP couldn't seem to find out why and the Rheumatology consultant ran nerve testing, leg and brain MRI and bloods which came back clear so said its FM and will possibly ease within a few months so was walking with a stick.

The pins and needles stopped at the thigh and have been like that for 2 years, last week while sat talking to my husband the same pressure feeling in my thigh and then my whole leg, I tried standing on my good leg (which now had the same P and N as the bad leg) and there was nothing, I can't even wiggle my toes never mind move my leg, it just feels numb except for the pins and needles. I'm really worried it might spread more from my thighs upwards.

I didn't expect that to happen, especially so suddenly. I'm waiting for an appointment to come through from Rheumatology for the results of my last brain MRI scan, so haven't bothered seeing the GP about the sudden loss, though my husband has mentioned it to him and he said that I should go see them, but MRI results appointment will be through before a referal appointment from the doctor.

So at the moment my previous Rhemy consultant says its the FM, the new one isn't sure (hence the recent brain MRI) and the GP doesn't think it is, so having Raynaud's I'm now in a electric wheel chair :( and don't know what to do or whats happening.
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Re: Advice needed please.....

Postby mnmc2004 » Wed Nov 28, 2012 11:36 pm

Can anyone help us with this, my wife is going out of her mind and struggling to keep it together.

We seen the Rheumatologist and he again diagnosed her with Fibromyaliga, he was very avasive with our questions, especial asking why her leg would go completely dead except for the pin and needles and he said 'it happens' and made lots of excuses to go leaving us with his locum understudy whos said he wasn't sure on the case and fibromyaglia with him being a locum!.

So we was given an appointment for the Pain Clinic which is only 4 weeks from seeing the Rheumatologist.

The numbness is now temporarily happening in right arm and in between her legs (private parts with a lot of pain) it has happened quite a few times now but came back within an hour.

Please if anyone can help, the GP doesnt seem know much about it to tell us whats happening and has offered her anti depressants which just made it worse.
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Re: Advice needed please.....

Postby FluppyPuffy » Thu Nov 29, 2012 12:12 am

I'm not sure what to say that would be of help to you and Mrs mnmc2004. I've problems with tingling and pins n needles and numbness, but nothing as widespread and impacting as you've described here:shock::shock: I'm surprised a neurologist referral hasn't been suggested as they rather than a rheumy would generally deal with these sorts of things. Maybe asking about being referred might be something to consider to see if it can get things moving a bit further on. Aside from that I really don't know what else to suggest. Sometimes Googling symptoms can throw up some possibilities. It's a bit of a double edged sword tho as some possibilities can be as worrying as not having an idea of what could be the problem. Sorry I can't be of more help to you:sad::sad:

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Re: Advice needed please.....

Postby Iceskatemum » Thu Nov 29, 2012 1:27 am

So sorry to hear that you are having such a hard time. Having gone to see the most recent Rheumy did he give you any results from your most recent MRI, if you have not got anything substantial from him (or his locum) it might be best to go back to your GP and see if they can explain things a bit better or are able to suggest another option.

Given it all seems to be mainly in the lower part of the body have you ever hurt your back? I have degenerative spinal disease and would get pins and needs etc due to that as well as the FM symptoms.
Or as FP has suggested given it seems "nervy" possibly discuss with the GP a referral to a neurologist.

IF you are referred to an NHS clinic and the waiting lists are long and given your anxiety about whats happening, you might consider trying to see someone privately (ask GP for possible names) in addition to staying on the NHS list . If you tell the private guy you are self funding and are looking for a initial consultation only , then following the initial consultation they might if they think it necessary refer you to thier NHS clinic for tests etc.

Hope you get some answers very soon.
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Re: Advice needed please.....

Postby shazq » Thu Nov 29, 2012 7:15 pm

Hi mnmc

Sorry i cant be of much help, i was thinking maybe a trapped nerve? but i know you mentioned you had a nerve test.

Is it just your lower half affected? have you had your spine checked?

Sorry thats the only things i can think of. Hope you get some answers soon. :hugs:
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