Forum

strange symptom

Hi all.

I have this symptom that is horrible and wondered if anyone else gets this. If so, can anything be done about it?

I am getting this symptom more frequently of late… the only way I can describe it is that it feels like all the ‘liquid’ in my body is solidyfying. It makes doing anything difficult. My legs and lower back are the parts of my body that are constanly affected but when the ‘solidyfying’ comes on it seems to reach all parts of my body … my hands become almost useless and they seem to ‘curl’ and I cannot straighten my fingers.

I am taking Baclofen for the the cramps & stiffness on my legs but it doesn’t do anything for the solidyfying.

Anyone else get this?

Hya, I’m trying to imagine what you mean. I get so many strange sensations and they’re hard to describe. I do get one that sort of comes in a wave over my body where I feel totally paralysed, can’t even breath… I sometimes think I’m having a stroke… but then it passes. Not sure if it’s the same as your ‘solidyfiying’ sensation.

The fingers curling though, yes that is MS. Often called ‘clawing’ as does feel as if your hands are forming a claw. I was getting this badly a few weeks back but now seems to have almost gone… get it sometimes in evening, so seems it can come and go.

I suppose it’s also possible that Baclofen is causing the solidyfying sensation… a side effect maybe… but quite possibly just another of these strange MS things. Have you spoken to neuro about it?

Sorry not more helpful. It does sound frightening, like the ‘having a stroke’ thing I get, puts me in a panic even though I get it quite often and it passes quickly.

Take care and have good weekend,

Pat x

Hi Pat and thanks for your reply.

The ‘clawing’ of the hands is the same as yours, it comes and goes; although it comes & goes a lot more these past few weeks.

The ‘solidyfying’ is not the same as your sensation of feeling paralysed. It is really hard to describe but it is like my whole body on the inside is ‘setting’ like concrete (but not fully set but it gets harder and harder to move). Walking feels like I am wading through mud and my arms feel extremely heavy. I can still move but it takes loads more energy and is a struggle to do anything - and then I fall asleep. I don’t even realise I’m falling asleep at times. I have been in the middle of typing a report in my office and woke a few hours later with my hands still on the keyboard!!.

I don’t think it is a side effect of the tablets but if it is then I suppose the ‘solydifying’ is the better option than the painful cramps and painful stiffness that is a result of the cramps.

best,

mike

Hi Mike,

I ve been getting this for about a year and it gradually got to the point where I felt like a corpse when I woke up during the night. I wouldnt be able to move, arms and hands clawd, couldnt grab the duvet or pillows in fact I felt like I had solidified. Trying to get up and out of bed my husband described it as if I had rigamortus. The pain had become unbearable and baclofen didnt do much. They gave me a trial of methylprednisolone for 3 weeks and it has really helped with the hands and the claw problem. I didnt expect them to work as I dont have rrms but to my surprise the have helped so much with the pain in the joints and although they arnt normal they have improved. My baclofen has also been increased. The senario you give of falling asleep in the middle of typing is one my family constantly point out they are always finding me slumped somethimes with fingers on the keyboard and other times with a cup of tea in my hand but the contents all over me!!. Maybe ask for a trial of steroids you never know.

Hi Anita and thanks for your reply.

Rigamortus is a very good way of describing what happens…I’m going to use that now when speaking about what happens to me. I was given a trial of menthylprednisolon when the nuro professor diagnosed me and it did reverse the useless leg and I was able to walk properly, it was like a miracle - I can walk again!!! It was only a 5 day trail of 500mg per day - recommended dose is normally between 4 - 49mg per day. As soon as I came off them I was so ill it was unbelievable. It felt like every bone in my body had been smashed with a lump hammer and could not walk for a week - getting to the loo on time was impossible and you can imagine the rest. I told my doctor I would never take them again. What dose are you on Anita? If it is a small dose that is permanant I may give it a try but never do I want to go through that sort of pain again of coming off them.

regards,

mike

Hi Mike its 300mg daily for 5 days then 300mg every alternate day for another 5 doses so you have 3g in total. I didnt tolerate the higher dose and had terrible side effects. I was on a lower dose for a long time 2 years in fact ranging from 16-64mg every alternative day. But most neuros dont like it due to the long term effects of them but at the moment its quality of life for me but they will stop next week. I will let you know how it goes.