Anyone Else have this Lower extremity experience

[missy142]

HI,
I posted this as a new post.  It was part of shakey legs that was posted back in september that I read.  These have been my symptoms.  Any thougts anyone:
On 3/08/09 my right foot went numb, with pain in my left great toe, pain in my lower back the radiated down both legs, thru buttocks on down.  I woke up the next day and essentially I couldnt walk.  After several horrifying days, I could stand for a couple of minutes and now can walk and stand for about 30 minutes after which time my legs get very weak like ive been standing for 3 hours. The get STIFF AND CLUMSY FEELING.  Along with  this I have various paresthesias in my legs, groin, buttock, feet alternating.  I recenty had the burning that would happen in my left anterior thigh turn into like a skin burning sensation.  Once and only once I had pins and needles and abnormal sensation around the left side of my torso, not squeezing but paresthesia.  And twice I have felt a small patch on the left side of my face feel numb.  I have alot of spine issues but as I continue to see more orthos, and neurosurgeons (alreay back today), they are starting to believe that the spine issues are not causing the leg weakness and strange symtoms I have been having.  Going to neurologist Monday.

Anyone have anything similar to this, or any thoughts PLEASE?

[missy142]

Yes I have used a cervical collar.  But beware of them. You should only use if your ortho says to and it is only to give your neck a break throughout the day IF you are in alot of pain. What it is really for is to keep your head from moving.  NEVER to be left on too long as the surrounding muscles become weaker and they are generally weak due to the injury to begin with.  And incase you havent noticed which would be hard to believe when you have a cervical injury all the surrounding small muscles in your upper back tighten up like rocks, so that they can barely be touched.  It is good like say the chiropractor does for me and works the knots out.  But they never really go away until your neck gets better.  I was told it is your body's way of protecting the area of injury, as if you have a cervical injury you tend to pull up your shoulders and walk around very guarded so as not to further injury.

As far as traction I have a home traction that I used to do, my chiro gave me for nothing.  But my  pain management doctor was supposed to write me a script for one (his idea) hes the one who gave me the epidurals, but he forgot the last time I saw him and so did I, walked right out without it.  It will probably be expensive though and WC wont pay for it im sure.  My neck is much better than it was, trust me.  It was throughout the whole episode of my lower extremety issues, because of the epidurals.  Actually after the neuro tomorrow I am to see my pain management md anyway if I can get there in time and Im going to ask about getting that 3rd epidural depending on what everyone thinks.

Oh yeah and trust me being a nurse has nothing to do with going to the md, I forget everything and try to spit out everything at once and sound completely like a blittering idiot most of the time.  Becuase I always feel rushed.  I am writing down.  But it has not been going on only since 3/09 the weakness so I dont have to go that far back and I know all the other symptoms Ive had.

ttyl
mary

[BOK2Bjan]

I just now saw this answer.  That fills me in on answers I needed.  I couldn't agree more - surgery needs to be the last resort.  I thought that the one neurosurgeon definitely thought your LE problems were from the C-spine narrowing.  But, even then, you need to wait until you've tried all of the more conservative treatments.  I just think those issues are enough to explain it.  But, you never know.  I HAVE learned that much over the years.

What about traction or a Cervical Collar to wear at least at home to keep your spine aligned?  I'm sure you and they have thought about it.  I'm looking into it myself to see if the numbness in my right arm would improve.  We still don't know if that's the Cspine degeneration or MS.  My oh My, the puzzle is puzzling!

One more day til your appt.  As a nurse, make sure you don't assume you'll be good and remember all your questions.  Write them down anyway - even those of us with medical experience forget when a doc is less than attentive.

TaTa, Jan

[missy142]

Hi,
thanks alot for your comments.  First Erin sorry you had that experience, but I really wish now at the time when this happened 3/09 that I had gone to the hospital instead of hiding in bed for two days, until I could hobble around.  I believe without a doubt they would have admitted me and then I would have atleast had a boatload of tests done. But I was petrified to tell u the truth.   I am walking much better now, my legs get weak and clumsy after about 30 minutes.  But in the last 2 days I am feeling better than I can remember as far as My legs go. (Of course just in time for my neurosurgeon visit yesterday and neurologist visit Monday):)   I have never been COMPLETELY  numb in the perineum (area of saddle to which you refer).  My first orthosurgeon told me I had the beginnings of cauda equina syndrome, which turns out I believe to be BS because my L5/S1 was not pressing on anything let alone my cauda equina.
Yes I know the feeling of your legs "not being able to carry you" you've hit it, severe muscle weakness.

Jan,
I have two orthopedic surgeons, two of the best supposedly.  I live 30 minutes outside of NYC (which is where I work, well was before all this started end of last year) and my ortho went to columbia med school and did his internship at NYU.  He is the chief of spinal surgery at Northshore Hospital out here.  The other Orthopedic surgeon was the first ortho to do artifical disc replacement in NY.  So my point in saying this is at some point I have to let these people do their jobs i guess and have some faith they know something.  My cervical area is feeling a hell of alot better since I have had 2 cervical epidurals, one in Jan and one in Feb.  I can have one more if needed, but want to see the neurologist before I have anymore steroids or do anything else.  The neurosurgeon that I went to who is also very good told me I agree with Dr. So and So  "you dont need to be doing any surgery right now" based on what I see.  He is tring to get a new cervical MRI since the one I have is 6 months old to see if anything had changed or gotten worse.  My doctors are aware of my cervical stenosis, what  can I tell you, they said "there is still room".  Also I have never had any Upper extremity weakness, just pain, radiculopathy and numbess in both hands.  EMG/NCS confirmed this.  I must have missed that site though maybe you can send it to me again.

But Im not having any surgery unless things get really worse again.  Yes I do have DDD, and abnormal curvatures in my spine as well.  But according to these surgeons plenty of people have the issues that I have, whatever.  As long as im feeling somewhat better. Im glad I did not have he fusion surgery way back when, when my first ortho suggested it (that was prior to leg issues), he is just cut happy, trust me.  Surgery should always be the last resort.  Believe me these ortho's want to cut, so if they dont have any ethics they will tell you, that you need it, whether you do or not.

Sorry youve been thru the ringer with md's, they can be a real pain in the *** to go to and work for.  Im a nurse and was working obviously before I got injured and I cant STAND them:)

missy

thanks both of u for all the input, i'll keep u posted on what happens on monday

[BOK2Bjan]

I hate to repeat myself, but did you go to the site I gave you on cervical spine stenosis w/ bone spurs and foramen narrowing causing the lower extremity issues.  I believe it is very pertinent to your symptoms.  If you have, disregard.  But, I thought it was really amazing when I saw that site, having just read your post.  I realize it doesn't address your facial symptoms etc., but your MRI report truly sounded like - regardless of if you have another neurological disorder, (such as MS etc.), the cervical spine should be corrected.  It is difficult for me to imagine a doctor not wanting to treat a spinal issue that severe.  At least what you wrote in that post which included the actual words from the radiologists report, made it sound pretty serious.   If I've missed something, once again, let me know.

I want you to know that I am very empathetic to having obvious problems and dx that doctors want to put new symptoms into - rather than exploring alternative causes.  I am dx with so many different disorders, that I am tortured with not knowing for sure which symptoms are caused by which problem.  I therefore do a great deal of research, and have ultimately come to the conclusion that there are some underlying basic issues that have branched out into many different diseases, but I need to solve the basic metabolic issues at the core of it all.  Many or my spinal issues are caused by genetics (weak bones & osteoporosis run in the family) as well as structural weakness which has made us a family of "round backs" and the other diseases have led to inactivity, which led to muscle weakness, which led to poor posture and exaggerated curvature, which puts abnormal strain on discs and surrounding connective tissue.  It all starts somewhere.

I hope you get more answers at the neurologist appt.  I do hope you don't ignore the c-spine though.  It makes me nervous for you.  Jan

[Erin0313]

Hi! I have had part of what you explained and since you are going to the doctor next week I will put it out to you so that you can ask. ?

The part that sounded like oh boy I've been there is the inability to walk and the numbness through the groin & buttocks .It's called saddle block. Like you just road a horse for hours and can't feel your middle. For me I could stand (with support) but if I tried to walk it was like my legs weren't there and wouldn't carry me.

I was dx with Transverse Myelitis and admitted to the hospital. I thought I was just going for a consult and he said you are staying. I was 4 hours away from home with no supplies and of course freaking out.

The treatment is IV Solumedrol to reduce the spinal inflammation. I still get little episodes. If I sit in a car for a long time when I get out I know that feeling and have to "stand" in place for several minutes before I can walk. But the good news is I CAN still walk.

Good luck at the doctors - keep us posted - I'll be thinking of you

Hugs, (because you need one)
Erin :)

[missy142]

Do you mean spinal lesion or herniation?  So ive been told that people with MS often have spine problems and vice versa.  I read somwhere i dont know if it was here or not that there may be some correlation between people with either bulging discs or herniated discs and MS.  I just cant remember where I read it, it was recently.  I dont know if they are prelimary studies or what.  Does this ring a bell to you as something you may have read?  I believe you had MRI's of ur spine right cause I looked at your profile when trying to find MRI pics.  To me it looks like you may have some buldges or a small herniation hard to tell.  Im pretty good with seeing herniations,, having seen all mine and although I dont claim to know alot as ortho is not my area either i am a nurse so it helps a bit sometimes.  

Get it checked out though, some PT, or chiro could help you.  I hope you dont you certainly have enough to deal with.  Unfortunately I hear a statistic that at autopsy 80% of people had spinal herniations, who knows:)

see ya
mary

[jensequitur]

It must be diffucult for you with spine problems, as well as all these other problems!

Yeah, I've been diagnosed with MS, and initially I just had serious vertigo and numbness.  Shortly after that, I had a relapse, and my leg went all wonky.  I have a lesion in the right cerebellum, which accounts for much of my weakness on the right side.  However, I have to wonder if there's something in my spine - I have numbness along the back, starting around the shoulderblades and tapering off at the lumbar.

[missy142]

thankyou again for the response.  I have 2 orthosurgeons and just saw a neurosurgeon today.  Of course I thought that these were responses to all my spine problems.  All md's say no.  Not the presentation that I had with my lower extremeties, (my cervical symptoms and injuries are a separate issue)  so the orthosurgeon and the neurosurgeon are both having me go to the neurologist. But at least ive been able to put off having surgery so far:)   I also have other things that would have nothing to do with the spine,  I have had a couple incidences of facial numbess, severe word finding problems, RLS (which could be spine too), severe fatigue, vertigo, and different instances in my life of urinary retention, once dx'd with a neurogenic bladder as well.  Also my L5/S1 herniation is not pressing on any nerves.

Your issue with your leg must have been very frightening as well and also could have been seen as having to do with your spine if you didnt have a dx of MS , I dont know if you do or not.  Spinal problems have alot of the same symptoms.

thanks again for your input:)  I do appreciate any input from anyone with experience.  Well I guess w'ell see.
m.

[jensequitur]

I haven't lost the ability to walk, but I did wake up one day and find that I'd lost the feeling in one leg.  It wasn't numb like it had fallen asleep - it was non-existent.  Like somebody had cut it off at the hip.  I tried to walk, and fell over because that leg collapsed.

The severity of your leg symptoms sounds to me like it's related to your back problems.  I have a friend with similar problems, and it's because of a bad back.

[missy142]

Yes I read it, but what im asking is: Has anyone had the experience of basically losing the ability to stand and walk overnight.  Is that something that happens in MS.  Its not just "shakey legs", its a severe muscle weakness that when it happened was the most frightening experience of my life, that has only gotten better after and a month and a half.  Now all this time later I can now stand about 30 minutes without having to sit down.  That is what I was trying to get across.

thanks

[jensequitur]

Just like I mentioned on the other post, I've had shaky legs and weak muscles.  I've also had paresthesia, and numbness...  not sure what to tell you - go to your neurologist!