So you are waiting for a MRI. I have never had l'hermittes. I have no words of wisdom. Waiting is hard.
MRI came back "normal" and by normal i mean, a diffuse bulging disc in L5-S1 plus bone spurs, and i have the same condition in my neck... all of them with slight impingement on the nerves. This is likely the cause of the L'hermittes sign, but the bladder symptoms and some of the other weird neurological stuff has prompted them to send me to a neurologist for further review and to "rule out" MS. Waiting does suck, and is terrible. Since i made this original post 10 days ago or so, there has been little to no change in my symptoms. I'm just learning how to move around and sit properly without aggravating it too much ! I'm of course scared of the possibility of MS, but feeling a little comfort knowing there are communities of people that are kind enough to offer advice and assistance. All the best to you :)
The waiting is hard. I had Lhermittes for a short while in 2011/12 and have the bladder issues still now. I know neither of those are fun or easy to deal with. I have no advice to offer, but hope that your symptoms will go away and that you'll get some clear answers as soon as may be. Best to you xx
Just wanted to commiserate. It does sound like your spinal issues are playing a major factor, and although I'm not a doc, if they are impinging on nerves I would think that could cause bladder trouble.
Bladder issues are the norm for me, and I'm very familiar with the buzzing (and the wait times -- also in Ontario!)
Keep us posted!
I would not wish MS on anyone. For me it has not been the worst thing in the world. My latest thing is walking on my left side is hard and painful. It is like I am dragging my left leg. My double vision is getting worse. Everything is manageable. I swam an hour today and did a 45 minute walk. Ironically exercising makes me feel better.
Thanks for all of your replies. It's been about a month since i posted this, and not a whole lot has changed. the bladder thing has died down, but i am getting some loss of sensation here and there (it comes and goes) buzzing in my legs and feet, and in the groin. Every two days or so the buzzing finds a new home to hang out in... lhermittes is still there particularly after walking. I did however decide to try the elliptical machine yesterday and today, and discovered that did not bring on lhermittes at all like walking outside did. I think the doctors are suspecting spinal issues ? but they are definitely not ruling out MS. I had a second MRI this past Friday and i should have the results by the end of the week. Last year I was experiencing some double vision, and still do occasionally but i always attributed that to WAY too many hours working in close proximity to a screen. It's really easy to go online and send myself into a tizzy over all of this. I of course hope I don't have MS, but if it's in the cards for me there is nothing I can do. If i don't have it, i plan on getting back into shape (i used to run competitively) and running some MS races, hell, I will do it anyway. It's amazing how much mental real estate this has taken up, and how much it has all depressed me. I will update this thread periodically :) I have been tired of finding similar stories, only to see them trail off without answers or conclusions.
Update - the second mri showed two lesions on my spine :( one at c4-c5 and the other at t1. I am going to be sent for a brain mri to corroborate an ms diagnosis, or rule it out. Looks like ms. My mobility has suffered greatly in the last month. I used to run 10k 5 days a week and now I can't make it to the and tore without severe buzzing and weakness in my legs. The neurologist prescribed me 1000mg of prednisone daily for 4 days to try and try and lessen symptoms. Oh,and my lumbar spine is royally screwed too. That I am not so much worried about anymore. It's funny, since I have mentioned ms - the calls and messages I normally get from friends have andtorendndnd but disappeared. Anyone else made to feel like this is contagious ? Any way, here's hoping for no ms - but by the sounds of it there's not much else it can be.
Well, darn. I am glad they are narrowing down the field and that the next steps should hopefully give you answers but I am sorry that you continue to decline in mobility.
With respect to not hearing from certain friends it is sometimes that they fear even the possibility of MS because they do not understand the disease it is today compared to 20 years ago. Other people just don't take illness in any form well.
It is definitely a situation where you learn who your true friends are and know that you will find new friends along your journey.
That was hard for me when I got my diagnosis. I had been involved with a great guy and we had been on and off for almost 20 years in addition to being a close friend. I have not heard one word from him since I was diagnosed over 2 years ago.
Some folks will come around and start asking questions, but sadly with others the distance will continue to grow.
It doesn't make dealing with health issues any easier but know that there are the cherished ones who will remain by your side.
Hugs and good luck with the brain MRI,
Brain MRI came back today... totally clear, no lesions. interesting. The neurologist still wants to rule out MS which means an upcoming lumbar puncture, another set of MRI's and an evoked potential test (did i spell that right??) Wow! so much fun. at least the bladder thing is a *little* bit better. I'll follow up in this thread when those other tests have been done. I didnt want this to trail off into a dead end thread like so many i've read along this journey !
I just wanted to wish you the best with your upcoming tests. Thank you for letting us know how things are preogressing for you. I find it really secular to learn about others' experiences - I am also in the middle of nowhere"what the heck is wrong with me" land!
Hi KT -
You don't need brain lesions to have MS. Any 2 areas of your central nervous system will do. That includes optic nerve and c & t spines.
DOn't spend too much time reading horror stories about LPs. In the right hands they are no big deal. I've had 3 and had n problems of any kind with any of them :-)
Just an update - i've had 4 brain MRI's over the course of the year, all came back normal. The first full spine MRI showed a lesion at T1, and a lesion at C6. 6 Months later a follow up MRI revealed the lesions were no longer visible. I still have lhermittes sign, and get a lot of numbness , tingling and other symptoms when i walk distances or exercise. I saw a neurosurgeon regarding my mechanical back issues, and his theory is that my pain and back symptoms are elevated because the diagnosed Transverse Myelitis causing the nerves to be hypersensitive. I am having regular follow up MRI's and am in the care of a very thorough neurologist. It of course could still be MS - but it could still be years down the road before that diagnosis.
Urinary symptoms are only occasional now, and a lot of the buzzing and tingling is only during physical activities and not so bad when at rest. I managed to go for my first bike ride in over a year this week, 7km! My symptoms were bothersome during the ride and for a while at home, but it's certainly more than i could do this time last year. I'll keep this thread in mind for others going through similar issues.
The healing process has been SLOW. and symptoms come and go, and can recur at any time. But usually slowly fade over the course of weeks to months.