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Still numb 16 months on.

Long story here but symptoms began around 7 years ago and I was dx with ME 4.5 years ago. March 2012 I woke up and felt numb. Numbness travelled down my right side and has settled and is still there on my left leg and foot below the knee. MRI showed lesion on spinal cord and positive LB. Dx Clinically Isolated Syndrome. I was taking gabapentin but have managed to cut it out completely as all odd symptoms such as L’hermitte, odd tingling, creepy crawlies etc have diminished dramatically although I am now left with real disabling fatigue and very poor mobility. I am kind of just wondering what there is now. My life is quite dire at the moment as the reduced sensation in my left leg and foot make standing and walking nigh on impossible due to the debilitating fatigue and pain. I’m not due back to see the neuro until Oct this year as my last MRI showed my lesion wasn’t still active. I had a chance meeting in the bank ( as you do) with a lady who also has CIS and has been prescribed Avanex which has had such a profound effect, she’s managed to return to work full time. I’m just wondering if I should be just accepting this as it appears my poor mobility and pain seem to be permanent. The neuro said to me last year he thought that the loss of sensation would be permanent as it had gone on so long. I just feel so lost and feel as though I’ve been “parked”. Anyone have any words of wisdom or comfort they can share with me?? A very sad and fed up Pinklady

Sorry you’re feeling so down pink lady. I have no words of wisdom as I’m new to all this but wanted to say hello and send hugs. It must be awful feeling you’ve been forgotten. Maybe it’s worth going to see your gp to see if you could get to see the neuro sooner? October feels like a long time to wait xx

Hello Pinklady. Unfortunately they are waiting to see more evidence of ms before they can make a diagnosis. Do you have new symptoms since you last saw the neuro? If you do then get yourself back to that neuro. You can either see your gp again and tell them you want to be referred back to neuro or if you have neuro secretary number give her a call or if you have any contact with an ms nurse you could call her. Any new symptoms you are having may show up on another mri if this is ms. Any new symptom could show up as another lesion on an mri and that is important to get that diagnosis. My return button will not work so sorry about this continuous paragraph! I don’t know your circumstances but if you can afford to have a private appointment to see a private neuro it might set the ball rolling. You can go nhs after the initial private appointment but it might help. Write down any NEW symptoms you have since you were last seen and take it with you. Good luck and don’t let them keep fobbing you off. Best Wishes. Teresa.x

Thank you both for your replies. I’m off on holiday in a couple of weeks and hope that will improve things a little but if not then I think I shall pursue the private route as funnily enough that was what the lady in the bank suggested. I still have the altered sensation which is extremely painful but all symptoms have died down now so no new symptoms to report so I expect my neuro to not want to see me if there’s nothing new to tell him. I’m just in the infamous limbo land that everyone talks about but as my mobility is so poor, and I’m only 48, I am stressing about what the future holds. I already have to walk with an arm and stick and have to use a scooter if I’ve got to walk any further than a few minutes, so am worried about what am I to expect in the future? If only we all had a crystal ball. Sorry for my moaning. I don’t usually moan to be honest, but sometimes it all gets a little much. Again, thank you for your kind words. XxX

Good luck with it all. The private appointment sounds the way to go. They cannot ignore you there as you are paying!!! Harsh but true! Teresa.x

Hi Pink Lady,

Your story is so so similar to mine and I am 48 also! In November 2008 I woke up numb down left side. Over the next few days I started to feel exhausted, heavy legs like walking through treacle. I then got l’hermittes too. Looking back I should have gone to casualty instead of my GP who insisted it was just a virus. Anyway after about 8 weeks I started to return to normal l’hermittes went as did numbness. Then in November 2009 I started to notice my calf started to get tight after exercise and I couldnt walk due to foot drop. I kept going to GP who kept saying there was no way I had foot drop. I was told that foot drop just doesnt come on after exercise - it is always there! Anyway I eventually made a private appointment with neuro (without GP referral) in 2011 and he took me seriously. I was sent for Brain and spine MRI and LP. There was one lesion on cervical cord, clear brain scan and clear LP. The dx at the time was either CIS or I had been damaged by radiation treatment that I had for a lymphoma in 1990.

Anyway I was eventually referred to NHS and saw a new neuro who has tried to redx me with MS. I have had the MRIs and LP done again and no change in either. Last week I had my third MRI and awaiting results…

Basically I have spasticity in my right calf and quad muscles making lifting leg and foot very difficult. I am lucky as I dont have any numbness or pain.

Moyna x

Wow Moyna. It does sound very similar indeed. From what I can gather they won’t Dx MS with only one lesion and that’s what I have at the moment although I do have o bands in my CSF. I know this latest episode has subsided but I’m left with this awful fatigue and pain on walking. Life sucks just now. Hope you get some answers this time. Take care Helen