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It's spreading to my other side!

My symptoms since August were all on my left side, including a blood clot, tight calf, sore foot, painful hand, at one point strange sensations everywhere on the left, strange painful ear and hearing and feeling like there is vice on my arm/hand and leg. I was coming to terms with my symptoms and taking gabapentin. Last night my right side started going with pins and needles in my hand and foot which has progressed to painful squidgy hand and toot. I am gutted! I now can’t feel or do anything properly as I have lost both hands (it has taken me ages to type this with one finger gently). Walking has obviously become more difficult. Did anyone else start one sided and then progress to both sides? Did the original side recover first? Any words of wisdom for me as this had made me feel really low just as I thought I had a small light at the end of a tunnel?

Hi Puddinglover, MS - assuming it is that - is completely random, I’m afraid. It just depends where the lesions form, as that is what determines which functions or parts of the body are affected. Lesions don’t only form where they did to start with. They can be anywhere in the central nervous system, and that’s why no two episodes are necessarily the same. Also why different people are affected differently, too, as the chances of having identical lesions are almost nil. A couple of odd things, though: I’ve never heard of MS causing a blood clot - this doesn’t fit. Sometimes, immobility (from any cause) does contribute to the risk of a clot forming, but this is not a direct symptom of MS. It would be important to understand how far your left-sided symptoms were caused by the blood clot itself, as that is a serious thing in its own right, and not directly related to MS. I’m a bit mystified by the “squidgy” hand and foot thing, too. Do you mean your hand and foot have actually changed appearance - got puffy? This doesn’t sound like an MS thing, as there are usually no visible changes on the outside - just changes in sensation and/or function. Or do you mean they somehow just feel as if they’re squidgy, but if you examine them, you can’t find anything wrong? If they have visibly changed, it sounds more like a circulation issue, but if it’s just an odd sensation - nothing to see - that’s more like MS. I think perhaps you need to see the doctor, in case these things aren’t MS. Even if they are, it probably needs reporting as a new episode, as frequency of episodes influences what treatment you may qualify for. So probably a good thing to see the doctor and get it recorded anyway. Hope this helps, Tina x

Thanks for replying Tina. I am currently diagnosed with CIS and I did tell my neuro about these new symptoms but he still classed it as CIS. He wouldn’t give me steroids as I had some in August. I don’t know what caused the clot but it happened the same time as my symptoms started. Both of my hands have got more swollen since this started as I can’t get my rings back on, and my left hand in particularly was very puffy. When I say squidgy I mean it feels like I am standing on a swollen foot.

Hi again, I thought these new things - on the right side - were only since last night? Even so, MS is not usually associated with visible swelling. I can never see anything the matter with the bits of me that hurt, or feel wrong. The only exception is cramp or spasms. I can see then, that the muscle is tense, even locked in an abnormal position, which can be quite scary - hands or feet going like claws, and very painful too. But nothing has ever looked puffy or swollen. Either way, I still think you need to see the doctor. Either to get it formally recognized as a new neurological episode - if that’s what it is - as that would change the diagnosis. OR just in case it’s not to do with neurology, and you have something else that needs treating. Tina x

The new symptoms did start yesterday and my neuro rang me back late this afternoon as the ms nurse doesn’t work on Fridays. He just said it would still count as the CIS. My hand did look like a claw but it was also puffy, now they both look about the same. Despite being signed off work for 2 months my dr has not seen me, just relied on what the neuro has said so I doubt she will shed any light on the matter. I originally went to my surgery about my clawing/puffy hand and tingling limbs and saw a locum who said it could only be ms if you had painful eyes. Just wish I could get a comfortable sleeping position as I can’t lie on either side due to painful ears (they feel like cauliflowers but look normal) and I now snore on my back and wake myself up (a new thing). And the dizziness and neurological surges are back :frowning: sorry end of whinge, just feeling low and getting pressure to get back to work.

And by this morning it is all up my leg and arm, all in my face so I am slurring and can’t swallow properly and I think it has affected my bladder :frowning:

You need to see the doctor ASAP. Out-of-hours, if necessary. You need someone to see you and check it IS a neuro thing. A neuro who hasn’t examined you telling you over the phone it wouldn’t change his diagnosis is no good at all. Somebody needs to see you, and assess this - not least in case it isn’t a neuro you need, but some other field. Don’t delay. It’s cutting it fine now, but some surgeries are open Saturday mornings. Can you ring them quickly, and at least speak to a doctor about what you should do?

If it IS a relapse, it’s not life-threatening, but from some parts of your description, I’m not sure what it is. The swelling isn’t right. Please ring them, and tell us how you got on. If it’s just an answer-phone, it will have a recorded message telling you how to access out-of-hours services.

Tina

x

Hi, I just want to echo what Tina is suggesting… Good luck.

A&E if you still have the symptoms. MS rarely affects both sides.

Liz

I just can’t face hospital again, I was in 3 weeks in August/September . I do have lesions in the same place both sides so I assume it is the other side kicking off in the same way. If I get much worse tomorrow I might have to go but I am due to ring ms nurse on Monday anyway. Thank you all for being there and for your advice, I know I am being a wimp for not taking it. Ps my surgery is not open at all on a Saturday.

“Assuming” can be dangerous. You’re not diagnosed, you’ve had a blood-clot before, and it’s not absolutely clear this is MS. Only one reply here has suggested hospital. The first suggestions were for the out-of hours GP service. If it is confirmed to be an MS relapse, nobody can force you to go to hospital about it - even if it is where they they think you could best be treated.

But you do need somebody (I would suggest NOT a phone-call with an MS nurse, in case it’s not MS) to actually see you, and assess what’s going on here.

Tina

x

Well I saw the clot nurse and she says my puffy hands are not caused my the clot, but didn’t seems overly concerned. I went to a local ms therapy centre for the first time today and they were lovely but also agreed that it was unusual to start one side then spread to the other. Unfortunately because of the clot I can’t have many of their therapies including oxygen chamber. I also have my first meeting with the ms nurse tomorrow, so I will obviously mention all my concerns, poor thing, could be a long meeting! Thanks everyone for your help as ever.

Just thought I’d update this in case anyone else had puffy hands like me and was worried. The ms nurse said it can be a symptom of not using your hands like you would normally so they don’t drain properly. Due to the altered sensations in my hands I can’t use them properly and so this is what had caused it. It is now the balance problems I am having most difficulty with but I don’t know if this is a new symptom or due to doubling my gabapentin.

Just thought I’d update this in case anyone else had puffy hands like me and was worried. The ms nurse said it can be a symptom of not using your hands like you would normally so they don’t drain properly. Due to the altered sensations in my hands I can’t use them properly and so this is what had caused it. It is now the balance problems I am having most difficulty with but I don’t know if this is a new symptom or due to doubling my gabapentin.