Last reply 3 years ago
Wierd leg.

Hey I had a CIS of optic neurtis in left eye last june, no other symtons except for tingle in my left knee, but on Sunday my right leg started to feel strange, its not sore and I can walk fine it just feels different above the knee,its hard to explain. Would anybody have experience of this if so could you let me know, thank you. Bey.

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stumbler
3 years ago

Hi @weybey , it does sound symptomatic of a neurological problem, where the brain is not getting the right messages from the nerve endings and doesn’t quite know how to respond.

This situation manifests itself in such situations as the itch you can’t scratch or the burn that hasn’t been burnt. So, strange sensations.

Keep a note of this “development” in a diary, so that you can recall the incident to your Neuro/Doctor at the next opportunity.

It may be an early warning of another episode for you, so try and ensure that you’re not over-tired or over-stressed. And also consider whether you have one of those winter bugs, which can create these kind of problems.


Anonymous
3 years ago

Hi @weybey

Are you still under a neurologist or nurse?
I’d let them know if you have. If your CIS was in June you may have a follow up appointment due depending on what was said at the time.

It may be nothing and hopefully it isn’t but do get it looked at.


weybey
3 years ago

Hi @sandwich I’m actually seeing my nurse tomorrow to start tecfidera, I still haven’t had any relapse’s since the optic neurtis in June but saw the neuro for the second time last january at the time he told me it was better to wait another 6 months and then make a decision however I saw my nurse a couple of weeks ago and he said that the nuero would prescribe me front line dmd’s if I wanted it, must have changed his mind!!! hope its not a bad thing.


Anonymous
3 years ago

Good news. It’s unusual to start treatment for CIS but much research now suggests this is benifical. I didnt realise Tec was licensed for it. Good luck with your treatment. It’s sounds like you’re in good hands.


Anonymous
3 years ago

Sounds a bit presumptuous to me. Why haven’t tests (evoked potentials come to mind) and MRI scans been performed before an RX for a DMT with not so enjoyable SEs? I think I fall on the side of Stumbler and then get an appointment asap to ask about the rationale behind a quick RX for MS.


weybey
3 years ago

Well when I have had a lumbar puncture and when I saw the neuro in january he did electrocute me a little. But I have only had one MRI done well I saw the eye doctor for the optic neurtis. Do you think tht its bad to be offered DMD with out being diagnosed with MS? @mbrsinc


Anonymous
3 years ago

PS. It’s obviously a hard call and seems contrary to a lot of my own postings. I just want to make sure that there is some science at work here. I am not use to receiving such serious treatment without objective evidence. It is close to my heart though because I received permanent damage to my right arm and hand early own, but that was before a year long search for a DX. I would only want to start something like Tec after a talk with my neurologist about the lack of tests. There is no doubt that there may be a neurological situation at play. MS is normally a DX of elimination. There are SEVERAL diseases that mimic MS. I am not sure what has been eliminated here. By comparison, I recall having 14 vials of blood taken at once and sent to our Mayo Clinic for analysis. I just don’t want this to be a case of “Ready, Fire, Aim!” But that’s just me.


Anonymous
3 years ago

I am surprised you are being treated with Tec for CIS. Are you in the UK?


weybey
3 years ago

@sandwich yes in Norwich. My MRI had multiply lesion in different place and a few months before the Optic neurtis is got a really really bad pain in my knee for no reason went to the GP and he gave me Naproxen and it wentaway after a couple of days. I told my neuro all this.


Anonymous
3 years ago

@weybey, I have to believe your neurologist did give you a DX of MS to qualify you for an RX of Tec. I also missed your message about the lumbar puncture. That is a tool that is frequently used to help with a DX although has high false positives to rely on it alone. I assumed he tried to eliminate something like a pinched nerve by “electrocuting” you! 🙂 I would ask what the DX is.


us-emma
3 years ago

The lesions on MRI + attack of optic neuritis would = MS diagnosis based on McDonald criteria.

In the states ON is routinely treated with DMT. In this case the presence of MRI lesions makes tmt a no-brainier.

Good luck with your stomach and Tec. I have heard that can be rough.

Did you fully recover from your bout of ON?


Anonymous
3 years ago

Thanks Emma for that! The details leaked out so slowly that my messages ended up out of context. The only thing missing from this picture was informing the patient about a very important, life changing DX and letting him have some say in what DMT to take. But after prompting, that may have happened too. 🙂


weybey
3 years ago

No the last time I saw my nurse he said i hadn’t been dx yet. I’ll ask tomorrow. @mbrsinc


Anonymous
3 years ago

@weybey, maybe it’s a cultural difference, but seems upside down to me that the patient is left in a lurch wondering if he has MS based on an RX of an MS DMT for trtmt! You might consider finding a neurologist with better people skills. MS is a chronic progressive disease. You will benefit for years by finding a qualified MS specialist with good communication skills.


graham100
3 years ago

Hi @wetbey. Late answer sorry. That’s exactly how mine started. My first nuro didn’t want to start me on any drugs. Then I moved to a nuro nearer to my home. She felt different and started me on rebif then copaxone. I got a lot worse once I started the drugs. But can’t say that caused it. Would like to go back and take nothing and see. Hmmmmm hope it’s all good news for you.


gormenghast1957
3 years ago

The subject ‘Weird Leg’ was my clinical term I invoked when I visited my GP a few years ago when I noticed something was wrong in my life. He inquired was this based upon our respective outlooks upon life which I found quite amusing.

I like my GP. He knows nothing about MS and relies upon me to give him news as to any breakthroughs medical science has come up with. Thirty + years ago when he was studying, it was a condition science was aware of but the people with white coats working toward something that wouldn’t kill their lab pets had done very little to flesh the ailment out. Knowledge of the existence of the condition was sufficient to get you through the exams and set you up with a career.

Back then it was a term in a text book and chances of you coming across a patient with MS was going to be rare. A diagnosis would be down to consultants who invariably wore tweed and were more concerned with their next appointment on the fairway or private practice, than some annoying person who should be happy to have a name for their malady as nothing could be done about it.

Like me, he views body appendages for people with neuro problems as being separate entities and for the most part share only a bond of the ball and socket joint. We agreed counseling wasn’t appropriate and perhaps it would be better if we just accepted we should follow different paths in life but hopefully stay in contact. As it happened, within a few weeks we re-established a relationship but it was never quite the same. For the most part we got on well enough and together we tended to go to the same places but would never stride into a room together. One or other of us would lead and we would always try and disguise the cracks in our relationship. Friends rarely commented as they were happy to see us together remembering the near breakdown in the relationship a few years earlier. They all knew I would never kick my right leg out but they knew the prospect of us staying together and sharing a wheelchair would cause significant emotional issues.

In the years since we have mostly got on. I’m in another relationship with my left leg which my right leg is quite ambivalent about. For the most part my left leg has pretty much supported the two of us.

In the few days after Christmas 2014 I felt neither of them were pulling their weight. I knew it wasn’t down to the excesses of Christmas as it has been some years since I have been completely legless as a result of excessive alcohol consumption. I’ve reached the age where I’d look a fool and anyway I don’t bounce the way I did when younger. I doubt if I would survive a 300′ fall bouncing off rocks the way I did when a ‘pathfinder’. I don’t like falling it makes you look stupid and it can hurts, it’s for young men as they’re resilient. My days of bouncing are a distant memory when it all went awry during a lads trip to Crete.

A path I thought I’d noticed earlier proved to be wishful thinking. Perhaps we should have taken the same route as others to the Bouzouki Bar where the house band crucified the art of Mr Page, Clapton, Townsend and a host of other musicians we adored. After an evening making merry, in the darkness I soon discovered if there had been a path it was only for goats and in the darkness I stepped into oblivion dropping some 15ft before bouncing through the rocks that made up the all but vertical face of this cliff. Youth and an incredible amount of Ouzo, Retsina and the much missed Fix (Greek Government brewery brewed this), meant that 300 ft later I landed in a heap on the soft sand not to distant from where our sleeping bags had been left earlier. Above me I heard my friends call out hoping some form of response would be forthcoming. Obviously they feared the worst as the sound of thuds and exclamations of pain had subsided in part due to distance decay and secondly to the piped bouzouki music that the staff in the bar listened to while clearing up. It came as a mixture of relief and shock when I shouted in the general direction of the sounds from my friends whilst admiring the beautiful array of stars in the Cretan sky. I shouted that not only was I alive but the bottle of brandy was intact and my sunglasses were in reach. Brandy and shades are what every mountaineer carries when making dubious descents under cover of darkness. Actually mountaineers probably don’t do this and I have never seen this in Hollywood gun-ho films as it would be just to implausible.

I didn’t walk to much over the next few days and was forced to sit at the Bouzouki Bar topping up my tan in order to cover the increasingly purple shade my skin was going. Still, my drinks were free as I was the living embodiment of someone who will become part of the great myth and legend story of Greek History.

My weird leg is back but this time I feel sure it must be due to military service. My right leg (to be fair) things were never that good after speaking to my GP and soon after my left leg seemed to be following a different path to that of my right and me. I’m convinced my right leg has been to war and didn’t come back. The proliferation of mines across a world riven with war and hate means civilians and military personnel are at risk due these cruel devices. I’m sure I have a prosthetic and it’s full of lead. I’m sure I hear a dull thud when it touches down.

Weird legs are better than having legs that confine you to a wheelchair. My legs are charged and it seems as if blue sparks fly from them when I go to bed. They have been going their own way for ages and turning off without notice. They’re also lazy and would rather sit at home than go shopping or walk across moor and mountain as once they did. My 93 year old mother who is all but wheelchair bound, walks faster than me. Every OAP walks faster and further than me.

I can still use them which is a blessing as one day a wheelchair will take their place.


stumbler
3 years ago

An enjoyable read, @gormenghast1957 . 😉


gormenghast1957
3 years ago

I really must make the effort to read things before I post them.

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