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L'hermittes and spastic bladder.. and bears, oh my
There's no bears, just l'hermittes and spastic bladder.
So... a bit of background here. Around May of this year I started experiencing really terrible sciatica, both sides of my body. I could hardly walk or get out of bed some days, and sitting in a chair or standing was agony, sometimes a leg would just give out. I saw my family Dr and she suggested Physio and Chiro. As a runner (every weekday 5k runs) i was keen to be healed, and get better.
I signed up for a baseball team, and began playing. the sciatica remained and was some days worse than others...
On June 28th I was at my local batting cage getting some practice in. I went to sit back in the car and looked down and BAM ! a shooting sensation from the middle of my back down through my legs. It felt like that sensation when you're a kid and you lick a 9 volt battery, know what i mean ? or when your funnybone is bumped. I thought nothing of it... got home to do my radio show that night and felt it strongly again! I again didn't think much of it, and went back to sleep
I woke up on the 29th and felt it at work, everytime i looked down the same thing. On the 30th i finally decided to go to the ER because I was having the feeling I had to pee BAD constantly, but i couldn't pee whatsoever. I'd go "normally" but the sensation remained. I also had constant buzzing in my legs and feet that felt like little pagers going off inside of me. Oh also, one of these pagers was directly in the crotch area which i began to associate / link to the urinary feeling.
The doctor told me he suspected it could be MS and requested an urgent MRI. Urgent in Ontario canada is apparently a week, because that's how long it took. in the meantime i saw my family doctor and she sent me for an ultrasound of the bladder and a hell of a lot of bloodwork. The MRI came back normal (cervical and lumbar)... oh, except for a diffused (large) disc bulge at L5-S1 and another bulge and osterophyte formation impinging the nerves in my neck too, awesome right ? By normal i meant, no lesions or sign of demyelating disease (MS) But the questions still remain, and I have yet to see a neurologist yet - it's really hard to get a referral here. Working on that.
I'm sitting here tonight with the L'hermittes still kicking around. I dont know if it is as severe as before, or if i have just learned to use my neck less - and sit in better positions. I also have that, i really have to pee feeling. It's very miserable. Between the two things it's really depleting my quality of life. I haven't ran in over a month, or done anything physical over total paranoia and fear that if it is my back, i'll make it worse... And i know nothing about MS and exercise restrictions - assuming that there's still the possibility I could have MS. I have had other congruent symptoms over the years including random bouts of exhaustion in the afternoon, chronic diarrhea and my optomotrist recently diagnosed my left eye as being lazy all of the sudden, though he didn't seem too concerned and told me to come in if it's still bothering me ...
I'm posting this also for people who are like me and afraid/concerned and are sitting there googling l'hermittes and generating nothing but MS results. From what i understand, it's possible to have this from a bulging disc as well, and mine happens to begin where my large diagnosed disc bulge begins (lower back). I'll admit i'm totally scared, it's been a month and I haven't had any answers or much improvement to speak of. I'm only working a few hours a day and the more i do, the worse it gets. I thought I would open up a dialog for others to join in on, maybe share our experiences?
I have read some stories on here, and some of you have gone through some horrible things, symptoms and problems i can't imagine, so i am thankful that these are my "worse" symptoms - but they are really wearing me down mentally. For those with l'hermittes, how long did it last ? :(
So... a bit of background here. Around May of this year I started experiencing really terrible sciatica, both sides of my body. I could hardly walk or get out of bed some days, and sitting in a chair or standing was agony, sometimes a leg would just give out. I saw my family Dr and she suggested Physio and Chiro. As a runner (every weekday 5k runs) i was keen to be healed, and get better.
I signed up for a baseball team, and began playing. the sciatica remained and was some days worse than others...
On June 28th I was at my local batting cage getting some practice in. I went to sit back in the car and looked down and BAM ! a shooting sensation from the middle of my back down through my legs. It felt like that sensation when you're a kid and you lick a 9 volt battery, know what i mean ? or when your funnybone is bumped. I thought nothing of it... got home to do my radio show that night and felt it strongly again! I again didn't think much of it, and went back to sleep
I woke up on the 29th and felt it at work, everytime i looked down the same thing. On the 30th i finally decided to go to the ER because I was having the feeling I had to pee BAD constantly, but i couldn't pee whatsoever. I'd go "normally" but the sensation remained. I also had constant buzzing in my legs and feet that felt like little pagers going off inside of me. Oh also, one of these pagers was directly in the crotch area which i began to associate / link to the urinary feeling.
The doctor told me he suspected it could be MS and requested an urgent MRI. Urgent in Ontario canada is apparently a week, because that's how long it took. in the meantime i saw my family doctor and she sent me for an ultrasound of the bladder and a hell of a lot of bloodwork. The MRI came back normal (cervical and lumbar)... oh, except for a diffused (large) disc bulge at L5-S1 and another bulge and osterophyte formation impinging the nerves in my neck too, awesome right ? By normal i meant, no lesions or sign of demyelating disease (MS) But the questions still remain, and I have yet to see a neurologist yet - it's really hard to get a referral here. Working on that.
I'm sitting here tonight with the L'hermittes still kicking around. I dont know if it is as severe as before, or if i have just learned to use my neck less - and sit in better positions. I also have that, i really have to pee feeling. It's very miserable. Between the two things it's really depleting my quality of life. I haven't ran in over a month, or done anything physical over total paranoia and fear that if it is my back, i'll make it worse... And i know nothing about MS and exercise restrictions - assuming that there's still the possibility I could have MS. I have had other congruent symptoms over the years including random bouts of exhaustion in the afternoon, chronic diarrhea and my optomotrist recently diagnosed my left eye as being lazy all of the sudden, though he didn't seem too concerned and told me to come in if it's still bothering me ...
I'm posting this also for people who are like me and afraid/concerned and are sitting there googling l'hermittes and generating nothing but MS results. From what i understand, it's possible to have this from a bulging disc as well, and mine happens to begin where my large diagnosed disc bulge begins (lower back). I'll admit i'm totally scared, it's been a month and I haven't had any answers or much improvement to speak of. I'm only working a few hours a day and the more i do, the worse it gets. I thought I would open up a dialog for others to join in on, maybe share our experiences?
I have read some stories on here, and some of you have gone through some horrible things, symptoms and problems i can't imagine, so i am thankful that these are my "worse" symptoms - but they are really wearing me down mentally. For those with l'hermittes, how long did it last ? :(
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.
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.
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 :-)
Kyle
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 :-)
Kyle
1 Comments
Thanks Kyle! that's very reassuring. The neurologist says it might be MS - but there's no proving the lesions were from different points in time. For now they're going with "transverse myelitis". From what i do understand, having no lesions in my brain is *usually* a better prognosis than having lesions... or so the neurologist said. she's an MS expert in my region,and active in the community. I'm just waiting for this "attack" or episode to end, healing a little more every day :) hope you're well. cheers.
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!
Cheryl
Cheryl
1 Comments
No problem ! I found it frustrating/disheartening to find stories similar to mine, only to have them trail off. So i decided to keep this thread open and active while I go through my diagnosis for others to read so they don't feel alone, or if they want to see a thread with some closure.
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 !
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,
Corrie
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,
Corrie
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.
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.
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.
Alex
Alex
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!
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!
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
Laura
Laura
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 :)
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