Leg issues not related to spine

[Poppy7402]

I think I've got some new additions to the "lies my neuro told me" page.

Last week when I was in hospital some young whipper snapper of a doctor told me that my leg being useless wasn't related to my spine.  What??   I thought my leg was that thing connected to the bottom of my pelvis and connected to my spine but I must have it wrong somewhere.  

He also told me that if there was something on my spine causing my current issues, it would have shown up on the scan three months ago.  I really didn't know that things can sit on your spine for three months without causing you a problem and then bam, suddenly you can't walk.

You learn something new every day.

Poppy

[Azlemed]

Hi, good luck, I have received a hospital appoint for neuro here so will go just to see what he says, I am thinking of going to see Ian Rosemergy in Wellington too though as I have little faith in the neuro here. Wish they would stop mucking you around and get sorted and give you a diagnosis.

[aspen2]

Poppy, I just had mris done last week..  My last episode has involved both legs (numbness, buzzing, inability to walk at  all (4 days), then wobbling about for another 9 days), bladder, bowel, inability to feel the need to urinate, retention, blah blah.

My spine mri came back clean.  I'm guessing mine must be a spine issue rather than a lesion issue, although no one has yet mentioned that.  OR the lesions are really, really tiny .. but how could they do so much damage being that tiny???

Everything is resolving now, for which I'm grateful.  AND -- if it was a physical spine issue ... would it get better?

Blech.  Limbo.  Questions.  Frustration.   I feel ya!

[Poppy7402]

Hi JdC
Because we live in a relatively small place (~100,000 residents) we don't have a resident Neuro and have to travel to the nearest teaching hospital, or see one of the Neuro's who come down periodically.  When I started this journey there weren't any coming down, only some jerk at the local hospital who called himself a Neuro but really wasn't qualified and hence why I travelled at that time.

If I don't get an answer later this month we'll fly to our capital city and see a Neuro up there who visits from the States as I now absolutely desperately need an answer.  I've just found out that if I had a firm diagnosis I could get travel insurance but without a diagnosis I can't!!

I'm feeling much better than last week, although still very tired.  I've had to go back to work this week and am finding it really hard so hanging out for Friday.

Hope all is well with you too at the moment.

Hugs,
Poppy

[Joiedecour]

Hi Poppy,
sorry I missed commenting on your previous post, and sorry to see you were in hospital for two nights : ( It is totally awful that the nearest neuro is 150 miles away!!!!!! What's with that???????
I don't know, but I'm thinking that you deserve some answers. How far can you travel for them?????
I know you are frustrated and confused, and probably a host of other things too, but are you feeling a little better than when you were in hospital?
I hope so,
Gentle hugs, JdC

[Poppy7402]

Thanks for your comments guys.  Mechanical issues have been ruled out by the physio and she thought nerve related.  Over the past two years I've had MRI's of all my spine and none of them have shown lesions.   I'm just one confused mess at the moment.  I have an appointment with the Neuro late in the month so desperately hope that he can provide me with some answers.  

Poppy

[essdipity]

Hi, Poppy. It's really quite possible to have both leg and bladder issues without identified spinal lesions. In all the years I've had MRIs, there has never been a single lesion identified on my spine, even with the most advanced technology and 3T imaging. Maybe there really are some lesions, but if so they're great at hiding.

Nevertheless I do have various weaknesses and other abnormalities, slightly in right arm, much more in right leg, paresthesias for many years in both legs and feet. I also have significant bladder problems, clearly neurogenic.

For the bladder function to be normal, nerve signals must operate from the brain all the way down, and in the right order. And the brain can certainly foul up other organs, and the limbs too. My brain MRIs show lots of confluent mess, especially around the ventricles. My neuro says all this can cause all the issues I have, which do include obvious brain issues as well, such as balance and a bunch of other things. I do have diagnosed MS.

So, bottom line, don't let them tell you that your leg or bladder symptoms can't be from MS because there are no matching spinal lesions. That just isn't so. MS is much more complicated than that.

ess

[kwarendorf]

I'm a bit confused. What MRI did you have done 3 months ago? Was it just your thoracic spine? The issues you describe can be caused by mechanincal problems in your cervical spine and lumbar spine, in addition to your thoracic spine. Or as Alex mentioned, they can be nerve related, either central nervous system of peripheral nervous system.

It is also very possible for something mechanical to occur within the 3 months since you las MRI.

Kyle

[HVAC]

Could be your brain and not your spine.

Alex

[Poppy7402]

Hi JJ,

Funnily enough, they ruled out slipped disc due to the pattern of my leg numbness and all the other stuff, tendons, ligaments, muscle, vascular, joints etc but couldn't tell me what it was.  They did say my bladder issues would have to be spine related though.  The physio said what she saw was what she'd expect to see in someone with MS, eg it went down the leg and then recovered from the foot first.

As for my second bit about things sitting on your spine - as always these days, my brain wasn't quite in gear with that one.  What I meant to say is that there was nothing in my thoracic spine three months ago and he was saying because there was nothing there then, there couldn't be anything there now that would cause my issues, ie nothing would develop in three months.  

Anyone know where they sell new brains?

Poppy

[supermum_ms]

lol hmmmm couldn't it 'technically' be caused by something other than structural or spinal cord damage, eg tendon, ligaments, muscle, vascular, joints etc and what young wiper snapper was just basically saying that your spinal MRI 3 months ago didn't find what he, would expect to find if it was being caused by your spine?

oh I think i'm confused, "I really didn't know that things can sit on your spine for three months without causing you a problem and then bam, suddenly you can't walk." are you saying they did find something or didn't?

Hugs.......JJ