My girlfriend discovered a new friend 4 days ago : a guy named Lhermitte, who's dwelling in her back. I hate this disease, and it seems to hate me too, by worsening so fast.
I have a question about this : if Lhermitte is part of a relapse, may it disappear like other symptoms with remission ? Did some of you experienced Lhermitte's sign going away ?
could try aiming for a serum level over 400 or even 500, and take b-complex with any b-12 supp.
Spinal MRI Supporting Myelopathic Origin of Early Symptoms in Unsuspected Cobalamin Deficiency
We report two patients with subjectively progressive sensory symptoms and gait disturbance due to cobalamin deficiency, but only slight or absent abnormalities on neurological examination. In both patients, spinal MRI provided evidence for a myelopathic origin of the symptoms, disclosing characteristic T2 hyperintense signal alterations confined to the posterior columns of the cervical and thoracic spinal cord. The patients illustrate the early clinical presentation of subacute combined degeneration (SCD) with a sensory neuropathy starting with acroparesthesia and Lhermitte's sign. Furthermore, the diagnostic value of spinal MRI for early diagnosis of SCD with characteristic findings is highlighted.
I had L'Hermittes on and off for the first 8 years of my disease (not at all severe) - it was in fact my presenting symptom, and wasn't a problem really.
However, since a really bad relapse last year, I have had it permanently and very painfully, along with many other symptoms. It seems linked to a large lesion at C4 - C6 on mri, which is still enhancing after 11 months, many courses of high dose iv steroids and Avonex. My neuro now feels that it probably won't go away this time....So now I make peace with it and just move very carefully!
I have absolutely no idea! Had the standard (here anyway) tests - thyroid, full blood count with differntial, urea & electrolytes, Igg, liver enzymes etc, but nothing else I am aware of. My Neuro says the L'Hermittes is caused by the lesion and I just have to live with it!
Would you mind giving me some more information as i would love to try anything to get rid of this...?
yea so if they gave you the rbc, i imagine they'd be looking for blood cell abnormalities that would be seen with seriously deficient b12. but i have seen articles about b12 that make me suspect it could have more roles, at the higher serum values, than we understand at this point in time.
i compare it to how we used to think vitamin D was just for preventing rickets, and now we're starting to understand its importance to the immune system, and the optimal serum levels for immune health are much higher than the levels for rickets prevention.
in my case i had a documented history of b12 deficiency before my diagnosis, so there are good reasons why supplementing got rid of lhermitte's in my own case, but i reckon it's not expensive for others to try it when their spinal lesions are in the typical b12 spots (ie. cervical - one of mine was around C4 to C6 also - and thoracic). consider taking a 1000mcg sublingual strip of methylcobalamin each day, and complementing it with a b-100 complex. and heck, throw in some vitamin C to help it all stick
don't take more than 100mg of b6 per day for any extended period. oh and this is reminding me, at one point i got on a particular b-complex brand that ended up being the culprit for some mysterious phantom itching that drove me nuts until i started to suspect the b9 (there was more in that b-complex that you usually see) and got my folate tested and my numbers were stupidly ridiculously high so i switched brands and the itching went away.
anyway the reason i suggest taking the b12 with the b-complex is because i hit a plateau with b12 supplementation and when i added the b-complex i improved dramatically in a short time period. fyi the b-complex regimen i used was a megadose treatment that you don't keep at for a long time. i don't imagine it would work for everyone, but it did for me. i was taking 300mg thiamine, plus 100mg each of b2, b5, b6 and b9, and a good chunk (at least 100mg) of niacin (b3) to bring on a flush, all that three times a day, plus the 1000mcg b12 and a few other things (lecithin etc) when i was really hitting it hard. i didn't stay on it long before seeing enough benefit that i dropped back to regular supplementing. it hasn't fixed my hands to perfection, but the lhermitte's is gone for sure.
see if your doctor will order you a serum cobalamin test so you have some baseline info. or maybe they have that number in your file already. and ask if they did a PCA test (they probably did). IF you're under 400 for serum cobalamin, there could be some value for you in the b12/complex regimen. if you think you need to and want to go for it, aim for serum cobalamin >/= 500 (from what my doc says, you can go far higher quite safely).
i hope this can accomplish something for you good luck!
This is really interesting information - thanks a stack for the post. I will be seeing myb doc in about 2 weeks time and will get him to do the blood test, and in the meantime, I will consult my chemist regarding ordering the B vits you mentioned, as I don't recall seeing anything like them on the shelf. I do take a standard B complex supplement, but it only has 10iu per capsule of B12 along with all the other stuff, and I take 3 per day (along with my fish oil, D3, calcium and magnesium - thanks to Gwa and NHE!).
The L'Hermittes is really severe and can cause temporary paralysis of my right arm if I move my neck too sharply - and my right arm has been numb for about a year now, poor fine motor skills etc - using the computer is a bitch because of the neck and the hand!
It really can't hurt, and "standard" medical therapy has not improved my situation at all, so hey, I will really give it a go, but want the test first (if the Neuro won't do it - he is very stodgy and hates questions from patients as we are all really stupid, don't you know, but I am limited for choice here regarding Neuros, then my oncologist will do it - she is fab).
Thanks once again - I am really excited about being proactive about this - I know that it may not make a difference, but your experience is encouraging - and I have found that I have learned much more from this site than my Neuro (his excuse when I try to discuss anything with him is that I have more time to read about MS than he does!). You are a star
Cool - I know how it is and I really appreciate your taking the time to share your knowledge/experience - don't want to sound stodgy, but still can't get over how great the people on this site are!
I take my calcium, mag, fish/evening primrose oil and d3 at night before bed (thanks to Gwa and NHE for that - on another thread I have been having some problems with Avonex and they suggested this), also the oils in the morning - 4grms per day.
Currently I take around 4000iu d3 nightly, but have never had any tests done and if I can convince any of my docs to do the test, I may adjust this further - it seemed a good safe compromise (read shot in the dark - figure it is not so much that it will cause harm!).
Anyway, I am really ignorant of supplementation and am sort of feeling my way - my MS was fairly benign for about 8 yrs (my symptoms always resolved fairly quickly and never really left any ugly reminders), then suddenly last year, things got worse very quickly, my edss went up to 5, I started Avonex, and now may be spms...Hence my urgent need to educate myself. I realise that if I had paid attention earlier, I might not be in this position...blah, blah, but self blame is useless and destructive and at least I have woken up now..I could use the excuse that I was too busy being scared s#!%less about recovering from bladder cancer and chemo, worrying about recurrence and metastisis - going for scopes every 6 months (something I still have to worry about) to pay too much attention to ms, but excuses are a waste of time - we play the hand we are dealt the best we can at the time
Sorry to ramble a bit - people will stop responding to my posts soon if I don't learn to be brief! Thanks for your time and opinion - I will put the B12 info to good use and let you know how it goes - I have to wear a soft collar when I drive in case of minor fender-benders that may cause whip-lash as this apparently could cause permanent paralysis of my arm, so healing the L'Hermittes would ease my mind on that score..
so yea, nothing to do with l'hermitte's and b12 - but i just thought i'd mention it since you talked about calcium and magnesium.
just curious: what kind of probs do you have with avonex? i don't take any of the drugs so i'm kind of out of it on that count!
I really am getting very interested in supplementation as I believe that some benefit can be gained - so please keep me/us up on how you are doing! I am a "newbie" on this issue so will be guided by all you "elders"!!! I have a dear friend who has battled polycythaemia vera (blood disorder - too many red cells and it eventually exhausts the bone marrow, causes problems with spleen and liver, platelet disorders etc) for well over 30 years and at diagnosis, she was given 20 years to live, and she was the one who sent me on a search for a good forum/support group as she said I would learn more there than from any doc, and she was right! She also takes lots of supplements and modifies her diet, and she is convinced that this has helped extend her life-span and improve her quality of life. So I am sold...
I get major muscle cramps from the Avonex (in addition to the usual fever, joint pain, chills etc) - not just in the legs, but all major muscle groups. For example, the muscles in my back go into such spasm that my back arches involuntarily, and I have to try to force myself to curl up into a ball to break the cramp - very painful, especially when I can't do it and my husband has to do it for me! The neck is an issue too as I battle to move it forward to break the cramp because of our old friend L'Hermittes....This leaves me in a great deal of muscle pain for a couple of days afterward and moving at all is an issue for me, so our friends advised me to try some supplementation as I really want to keep going with the Avonex as I was relapsing frquently and not recovering.....My Neuro says it can't be the Avonex as it is not a common side effect that he has heard of and it must therefore be in my head...Don't you love these guys? I am crying in agony with tetanis (to me anyway) like spasms and he says it is not possible! They can make you doubt yourself as they dismiss what you experience.....Luckily I have a great Onco andthough she can't treat my ms, she knows a lot about interferon therapy (more than the neuro) because she has been using it for so many years for cancer treatment - maybe I will take this to her.
Anyway, after another long ramble, take care ...
i REALLY hope you can find some resolution from this site - i think my neuro is great, but if i listened to him or the ms clininc, i'd be screwed. i do NOT have them to thank for any improvement i have seen to date. period.
- Volunteer Moderator
- Posts: 5075
- Joined: Sat Nov 20, 2004 3:00 pm
- Has thanked: 1 time
- Been thanked: 7 times
I get something similar. If I forget and I don't take my ibuprofen at least 3-4 hours after my shot then I get spasms in my upper body. For example, if I'm sitting, these spasms cause my upper body to lurch forward from the hips. It's really annoying though I can avoid this type of side effect by remembering to take my ibuprofen 3 hours after my shot. Note that I've never experienced cramps exactly like you describe but I think that you might want to look into finding a neurologist who will at least listen to you.For example, the muscles in my back go into such spasm that my back arches involuntarily, and I have to try to force myself to curl up into a ball to break the cramp - very painful, especially when I can't do it and my husband has to do it for me!
Long before I was diagnosed with MS I had some problems with pain in my left knee. At that time I was concerned that this was a left over from a ligament in my knee which I had torn during a skiing accident. Now, I knew it was my left knee that I had previously injured. However, the doctor wouldn't believe me. He kept looking at my chart and telling me that it was my right knee. He was so adamant that it was my right knee that he "almost" convinced me. However, he then said the critically important words which resolved this conflict. Those words were "Look, anytime you've had an arthroscope inserted into your knee you can expect these types of problems." I simply stated, "Sir, I've never had anything inserted into either of my knees." He then looked at my knees, saw no scar tissue left over from a surgery, looked at the chart again, realized he had the wrong chart, and left the room to go get the correct chart - my chart! The point of my story is that although we need the expertise of medical care professionals, we should not let them convince us of something we know to be false. If you feel that your cramps are a side effect from Avonex, then that may very well be the case especially if they never occurred before starting Avonex. Strictly from an experimental perspective, you could test this hypothesis by going off Avonex for a while and see if your cramps subside. However, that will have to be a decision that you, in consult with your doctor's advice, will have to make.Don't you love these guys? I am crying in agony with tetanis (to me anyway) like spasms and he says it is not possible! They can make you doubt yourself as they dismiss what you experience...