I don't know what to do.

Hi I’ve not been on here for a while, but still been keeping up with you all, I find your knowledge and experience invaluable ( thank you) I had the results from my mri which I chased from the gp who had had the letter from neuro (5 weeks earlier) saying, clear mri, some signs of something that might explain my symptoms and discharged that was it. That was back in may. My problem is what do I do I feel terrible a lot of the time , I ve been back to gp who wanted to refer me back to neuro, so he is sending another letter. My problem with one leg has now affected my other leg and my fatigue is really impacting on life. I’m not sure the neuro will agree to see me even or take me seriously even if he does. I’ve made an appointment to see gp next week I don’t know why or what to say , I just feel rotten and hope he has a light bulb moment!! I just would like some direction is there another consultant that could shed light on what the cause may be. The neuro did say on 1st consultation there was signs of demyelination. Does that count for nothing because the MRI is clear ( which has now progressed to other leg) so where do I go to get help of any sort? Any help would be really appreciated . X

Hi, I have a problem with one leg too. started wih weak ankles Now can’t flex my foot or flex my knee. i have had 3 mris, first 2 showed one lesion the third it had cleared up - but symptoms still worsening. Walking is difficult. Problem has been getting worse for the last 4/5 years.

What problems are you having with your leg?

Moyna xxx

Hi My left leg feels heavy all the time I had number of lesions on first MRI, still waiting to see neurologist in Oct for results of 2nd. My walking is bad compared to what I used to walk like. I could walk miles no problem now just about make it end of street. Keep saying wish my brain would just let my leg go back to normal. Diane x x

Hi again well in just over twelve months I’ve gone from doing three exercise classes a week to a slow walk. I can walk but legs are numb and the longer I am on them the more numb they become rising up my legs. I have the usual pins and needles and horrible cramps creepy crawley thing going on and on occasion my toes move on there own and I can’t stop them. I also find they go from wobbly and weak to rock hard and painful. The neuro said I had brisk reflexes and I think my toe separated and pointed up cant remember what that’s called a sign of something not right. Oh yes I have lost touch sensation on parts of both feet now!! Sorry for long blurb but you did ask :slight_smile: I thank you for asking it is nice to be able to tell someone. Jo x

Its called the babinski reflex and the way you decribed your toes moved is abnormal. Did you have a brain scan? maybe you need a spinal MRI. Good luck x

Hi blossom, yes that’s it, babinski reflex. I did have a full brain and spinal mri but didn’t show any lesions well I don’t think it did or they wouldn’t have discharged me. Do you think I should push to see a rheumatologist, as i have this stiffening all the time and then when i try and stretch it out it causes nasty cramps? as I said I have made an appointment to see GP but I don’t no what I expect him to do. I’m dreading the winter too as when I get cold I have an uncontrollable shake that seems to come from inside (does that make sence) this summer when the temp dropped it affected my arm like my toes, i had a moving action that I couldn’t control. Sorry I’m going on I don’t talk much to anyone. Jo x

Hello Jo. You say your gp is writing to neuro? so the neuro will see you. He would have to have a good reason not to and if he did refuse, which I very much doubt then your gp simply refers you to another neuro. You have symptoms that need assessing and treating. Perhaps it would be a good idea to write a list of things you want to mention at your gp appointment…same when you see neuro…take a list. Have a word with gp about seeing a Rheumatologist, it cant hurt to get a rheumy opinion. I’ll say to you what I’ve said to a couple of others on this forum…dont give up. Its your body, you know it better then anyone. If you feel something is wrong then persevere. And don’t worry Jo, talk as much as you like. There’s always someone on here happy to chat. Take care x

Thanks Blossom I will do that Jo x

Hi, if you have a positive babinski sign and overactive reflexes then you must have a problem in your central nervous system. I cant understand why you have been discharged. Please make another appointment.

Moyna xxx

Thanks Moyna your comments and blossom’s give me more confidence that i should fight my corner and I’m not making a fuss. Jo x

[quote=“Metherapy”] Thanks Moyna your comments and blossom’s give me more confidence that i should fight my corner and I’m not making a fuss. Jo x [/quote] Thats more like it Jo…bells gone, out your corner now ready for the next round Its rotten when you get the down days but just hang in there, things will get better. Keeps us updated wont you

Will do thanks blossom Jo x