New and looking for advice please

Hi all, will try and keep this as brief as possible. I was diagnosed with CIS at the beginning of this year with one spinal lesion of demyelination after experiencing L’hermittes phenomenon and multiple right sided symptoms including numb foot, moved up leg, extreme hypersensitivity to left side (up to my waist) but i could draw a line around where its hypersensitive and where its not. Pins and needles, pain in leg especially when i have been on my feet a lot in the day, lower back pain and a really sore right bum cheek, and a general feeling of overall weakness including in my arms, biggest issue being super stiff and heavy legs like constantly walking through treacle and feeling like i’m walking slightly robotically. Anywho, i was given a 5 day course of steroids… Methyprednisilone (apologies if mis-spelt) a few weeks later the pain reduced, the L’hermittes intensity reduced and my arms felt a little stronger (steroids early February,started to feel a little better end of Feb) I am due to see neuro next week however early April my left leg has now gone numb and i experience hip, knee and feet pain as well as bi-lateral lower numbness and hypersensitivity as well as a twitching in my feet like someone has electrocuted me and my feet kind of ping out! I also get a buzzing from my waist down occasionally and ive woken in the night a couple of time with numb ‘dead’ hands and this completely stops at my wrists! I am so tired all the time as well i manage to work 5 days a week part time with two young daughters but come the evening i am rubbish i can barely walk and just want my bed! My neuro told me when i first saw him this was CIS and i had a 30-40% chance of another episode, however my question and concern is as follows: Its nearly been a year since my symptoms started and although i had little relief around Feb i dont feel any better i also wonder if the new and worsened symptoms from April constitute as a new episode or just more development from the originally diagnosed CIS…I’m really nervous about the appointment as i have no idea which way it is going to go… Generally speaking during the day the symptoms arent massively dibilitating more of an annoyance but raindrops hurting my legs from the hypersensitivity is a very strange sensation to get your head around… There have been many other symptoms but i wont bore you with them all… I am just wondering if anyone can relate and whether i have entered another episode or whether neuro will say it is still CIS in which case why hasnt it got better a year later like he said it should do? Many Thanks, a worried Kate :slight_smile:

Hi Kate,

Sorry you havin such a rough time. I have not been dx with CIS or MS but I did have brain lesions and demylination show up on my first brain scan. I can relate to most of your symptoms, mine are very similar but with the addition of extreme vertigo and spasms around my chest.

Having had a dx of CIS means you are further down the road to some kind of neuro dx than I am because they have at least identified something has happened.

My “idea” of MS was that a person has quite severe episodes that last for a while and then go away, but it seems I was wrong. I don’t really know what constitutes an MS “relapse” and guess its different for many people. i too have continuing, worsening problems and have had 3 episodes now of being “really bad” (i.e unable to walk or work) but whether that means MS or not I have no idea.

I would just make sure you tell the neuro everything thats happened since last time you them, especially about the periods of extreme symptoms. If there ae changes identified in your next MRi then think that will give them more of an idea of whats going on.

I do hope you get a better idea when you see the neuro, wishing you all the best.


Many thanks for your reply… I think i am just apprehensive about the appointment and any outcome from it! Take Care xxx

Hi Katie and welcome.

Your situation sounds similar to mine. I also have the issue of waking up in the morning with both handsdead which stops and the wrists.

My story starts in 1991 - I had l’hermittes and the dead hands in morning. Had an MRI and nothing! DX with radiation myelopathy fro treatment I had in 1990.

Then in 2005 - numb arms. Again had MRI and nothing. Numbness lasted 2 months.

Then in 2008 (June) twisted ankle badly as it felt weak. But in Nov 2008 I had a dreadful episode with intense l’hermittes, numbness left side of body and weakness right side. I felt exhausted totally wiped out. GP said I was not weak and refused to sent me neuro as I been in 2005! Numbness went after a few weeks and l’hermittes gradually diminished after 4/5 months. GP diagnosed stress. I always feelt that the episode had left a slight mark of a little weakness down right side - although GP disagreed. The exhaustion had lifted. Since 2009 a year after attack spasticity gradually appeared. In 2011 I eventually saw another neuro and he blamed the radiation I had in 1990 - there was a lesion in spinal cord… I saw a second neuro in 2012 who diagnosed a CIS after another MRI and a negative lumbar puncture. The situation at present is that numbness (gone), l’hermittes gone, fatigue not bad, but spasticiy in right leg so bad in calf muscle that I have difficulty putting my heel on ground when I stand. Dead hands in mornings 3xper week. Neuro said that the CIS obviously did some damage and it is taking its while to show full extent. I often wonder if GP had sent me to neuro in the middle of that attack and I had steroids would that have lessoned the overall evil. I am annoyed as at the time I only got beta blockers!

I am interested to see how yours started. Did you had any niggles before the big attack ?

Take Care

Moyna xxx

I think my first neuro was waiting for me to have a relapse before he diagnosed MS. I wasn’t happy with his ‘wait and see’ approach and got my GP to refer me to another neuro who duly diagnosed primary progressive MS. I can accept this as it fits my history of gradually worsening symptoms without obvious relapses and remissions. From the reading I’ve done, the older you are at dx the more likely it is that it’s PPMS rather than RRMS but it seems like not all neuros are aware of this!

Hi Moyna and Mitzi, sorry for delayed reply havent had my laptop all weekend! Moyna in answer to your question its quite hard to idenify any ‘niggles’… initially CIS or MS was the last thing i thought it could be, last summer I first had my right foot go numb was hypersensitive and was getting the L’hermittes ( prior to this i used to notice i woud get pins and needles in my legs what seemed abnormally quickly), i thought i had a trapped nerve but gradually the numbness worked its way up my leg and i started getting quite tired, went to GP who did all the usual blood tests, thiamine, Vit B12, FBC etc etc… all came back normal, went back to GP again and said it hasnt gone away what now, she referred to neuro who i saw in January by which the point my whole right leg was numb and hypersensitive i was stiff as a board and felt stiff and achy 24/7 like no matter how good a night sleep i had i never felt rested, my foot had got, and still is, so numb i can barely curl my toes. Saw neuro who did the MRI which showed one lesion, shorty after seeing him my leg gave way one night, and i started getting the odd spasm or twitch in my feet, then had the steroids after he said it was CIS couple symptoms got a little better i remaind numb, hypersensitive and tired and plodded through March and now April hit i felt terrible left leg now numb and hypersenstive, arms ache and feel very weak cant carry much very far. my legs get quite painful and walking although entirely possible is hard work and can get painful, im always tired, always yawning, always so stiff, if im on the floor it feels like such an effort to get up. Lower back ache is getting worse… its just rubbish!! I cant wait to see neuro next week but at the same time i am dreading it :frowning:

Hi guys, for anyone who may have been interested i had my second neuro appointment today, he still feels my symptoms are the result of the same lesion that he diagnosed as CIS… Explained how painful it gets and how disconcerted i am that it hasnt gone away which was his original prediction. He is putting me on Gabapentin and doing another MRI but has basically said it will stand as CIS unless i have an attack of optic neuritis… this sound right or familiar to anyone?

Thanks in advance x