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Trying to get to Grip - literally

On the 26th July I drove to work feeling frustrated that my right eye was blurry. By late afternoon I was at my local hospital with complete loss of vision in my right eye and being told that it was suspected that I had suffered a TIA and would need an MRI on my brain. The next morning I went back for the MRI but this showed nothing. I was taken to the opthomology department and an urgent appointment was made for 5pm. The consultant did a full assessment of my vision and said that it was most likely optic neuritis but I needed another MRI with contrast. The following day I noticed that my right leg wouldn’t work properly and both my feet were numb. I had the MRI and two hours later we were told that there was a lesion on the scan which indicated MS and that I would need to see a neurologist. On the 5th August I had my first appointment and was completely numb down my right side, from forehead to toes and was struggling to walk. A spinal MRI showed multiple lesions. I started a course of oral steroids on the 11th August and within a few days my mobility improved and some numbness had disappeared. Unfortunately this did not last and by the end of August all symptoms were back. After seeing the consultant I was then given a three day intravenous course of steroids. Once again within days my symptoms improved. Alas by the first week of October, I experienced numbness on my left side and after seeing the specialist MS nurse was once again given a three day course of intravenous steroids. My mobility is definitely better but both my hands are still numb and I have the ‘hug’ known by MS suffers. I have now had another brain and spinal MRI and await a further appointment with the neurologist to discuss medication going forward. I have now gone back to work but its not easy dealing with the numbness and mobility on a daily basis. I have suffered from Crohns disease since I was sixteen and decided to have a colostomy a couple of years ago so I could take back some control of my life. The biggest issue I have now is dealing with the bags with numb hands! I generally think of myself as an upbeat person but I am currently struggling with not knowing whether I will ever get the feeling back in my hands and when the next attack will hit and what it will rob me of next.

Charmaine, it sounds like you have been on one hell of a bumpy ride over the last few months.You have had a really scary time and I am not surprised that you are frightened about what lies ahead especially on top of your Crohns. I don’t have much in the way of advice as I am new to all this myself but I noticed that no one had replied to your post and just wanted you to know that someone had read it and that someone cares.

Take care of yourself x

hi charmaine

a lot of my issues have been resolved by talking to people who have been through the same things.

for example, i was having one UTI after the other but a man who goes to the ms therapy centre with me told me that a maintenance dose of trimethoprim has made his UTIs stop.

i’ve been doing the same and haven’t had a UTI since.

thiamine helped my pins and needles when first diagnosed.

thiamine is one of the B vitamins.

have a good talk to someone who knows about these things.

medics are good for prescribing drugs but they only have a general overall knowledge.

good luck

carole x

Hi Charmaine

Numb hands and stoma bags are a bit of a problem. In a way it was probably easier to learn to use stoma bags whilst already having numb hands rather than have it happen later (my colostomy was in June but I’ve had sensory problems with my hands for years due to MS).

Have you tried changing the make of your stoma bags? You might find a different make is easier to deal with - perhaps get some samples from your delivery company?

In terms of whether your hands will get better: it’s possible/probable. It sounds as though your MS is the relapsing remitting variety (because the steroids have been helping you to regain mobility etc). With RRMS, you have symptoms that will either partially or completely remit. So, it’s possible that the steroids you’ve had will improve the quality of your sensory feedback in your hands over the next weeks and months. When you’ve had MS for years, sometimes it’s hard to know what ‘normal’ feels like because multiple sensory attacks have made my hands (for eg) insensitive so I’ve had years to get used to them not feeling things properly.

What tends to happen if your symptoms don’t entirely remit, is that some of your nerve endings compensate for the deficits, so your feeling might change rather than entirely coming back exactly as it was. So it’s possible that your hands will alter slightly but that you’ll be able to cope with your stoma.

Hopefully soon you’ll get to find a disease modifying drug (DMD) that will reduce the number and severity of relapses. This will help into the future, so once you get to the other side of these initial relapses, your hands will recover or change, but you’ll learn to cope with them, and future relapses will be few and far between.

Sue

Thank you for your reply - its really strange at the moment as I swing between “things aren’t so bad” to “why me”. I’m trying my best to stay positive and returning to work brings a sense of normality although it can be difficult typing with numb hands and the minute I walk anywhere my vision becomes so blurry. What I really want is the consultant to give me some drugs to stop it getting worse and hopefully with time things to return to normal. I appreciate that this is highly unlikely and I will be left with some issues but at least I will feel like something is being done. In the meantime I wake up every day and pray that I have not got worsening symptoms. I hope that you are ok and you are getting all the help and support you need. When did you get diagnosed?

The waiting and not knowing is so hard and you sound like things have been pretty tough. Make sure you take it easy at work, I know you want to get back to normal but don’t push yourself too hard!

I only got diagnosed on Tuesday!