Last night I woke up about 3 a.m., my arms hands, legs and feet were numb but my legs and feet were the worst, I couldn't feel anything from the waist down....well, I needed to get up to go to the restroom and when I stood up on both feet, I immediately hit the floor, it was a soft landing, thank goodness, but I had to just sit there for about thirty minutes massing my feet so that I could get back up, so I just sat there talking to my puppy but as I was working on my legs & feet, I realized that they were just totally dead, no pain, no feeling at all, like when your leg goes to sleep but way more intense, the only way I could move them at all was to lift them with my arms, it was very scary....finally I got to where I could stand up but the numbness was still there, just to a lesser degree and it has stayed with me all day....I can't imagine what caused that....any ideas?

Hey Michelle,
Wow,that's crazy... glad you're ok and your pup was there to look out for you. My friends mum just got dxed with and autoimmune disorder, i'm not sure what the name is, ill find out asap. But her symptoms were exactly what you mentioned.. numbness in limbs and waist down, loss of feeling. Could be a crossover with AS and this maybe.. I'll get back to ya soon. Hope it settles down though or better still doesn't come back and you're holding up ok after your recent tough times. ((O))
Rob

Michelle, get your iron level checked. Thirty-four years ago, I had a similiar incident happen to me. A month prior I gave blood, and my iron level fell dangerously low. The nurse at the time gave me a shot of iron. Then I was told to take iron tonic for a month. Then I had to have my levels rechecked. I was advised never to give blood again.

It seems I am bordering on anemic, and my iron just does not rebuild.

Hugs dear friend

Gerri

I've got no idea what be causing that Michelle... but that sounds really scary, and as my mum would say, you've got enough on your plate right now. Can you give your doc or nurse a call? Have you been able to catch up on any more sleep?
Thinking of you.

Hi Michelle,

It could be all manner of things - but it is definitely NOT normal! (duh....)

It could be the onset of transverse myelitis - inflammation of the spinal cord - thought to be caused by a virus - best treated quickly for the best recovery.

I would be getting myself checked out ASAP, if I were you...

Hope you are OK,

Hi Michelle.
That dosent sound too good I agree with Louise you need to get it checked . I get the same problem with my arms go completely dead and cant move them thats trapped nerves so it could be a trapped nerve around your spinal cord. Get it checked soon as possible if you cant go then phone your Doc and get his advice.
Kevin

Hi Michelle,

My first question is, are you taking any new drugs in the last couple of months ? Blood pressure meds do this to me . The other thought would be spinal stenosis from the A/S. I have nerve pain because the fusion is compressing nerves in my spine sending pain signals to my brain.


Janet

Hey Michelle! I am not sure what to tell you. I would be concerned that something is putting pressure on your spinal cord. Have you had a lumbar MRI recently? If you lose bladder or bowel control then I would get to the ER as soon as possible. I was thinking cauda equina syndrome.

Craig

Hey Michelle,
It is odd that you would experience numbness in all of your limbs at the same time. I would think that would rule out almost anything to do with your spine since the nerve to the arms and legs are at different levels of the spine. It sounds more circulatory, but even then it seems strange that it would affect your arms and legs both.
I am in agreement with everyone else. See your doc quickly. While it may be nothing it could be something serious. Keep us posted..

Hi Rob....if you could get that, it would be great, thanks...yep, pretty crazy...now I'm afraid to go to sleep, I've been up all night beecause I'm afraid that it's going to happen again....

Actually Gerri...my iron level was low last month when I did my labs...and that's the very first time in my life...well, it said low red blood cell count, is that the same thing? Thank you so much, hugs too, bon ami...

Hi kurumi...I just called my rheumy, her assistant told me that she's out for the week but gave me the first appt. Monday morning...she said I may need to see my doctor here ASAP, that it sounds serious and scary...then she says the usual, "Don't quote me on that, it was just a suggestion, I'm not a doctor and I'm not suppose to give out medical advice...". I like her a lot, she's very god at what she does and she's great to talk to....I'm going to try again here...there's a new E.R. Director, he's about twelve and has the 'God complex', I've been bending Trudi & Gerri's ears about him for a couple of weeks now.....I don't want to go back and see Doogie Howser but it looks like I'm going to have to.... Thank you,

I'm never NORMAL, Louise... I Googled tranverse myelitis, I'm going to do more reading about it, thank you so much for the tip, my friend....

Thanks Kevin, I'm sorry to hear about your arms though....that scared me, I don't want that to ever happen again... I just don't know about this Enbrel, I'm still going in the wrong direction, or at least my body is....now I'm scared to go to sleep....

Hi Janet...well I've been on Avapro for high BP and Lipitor for cholesterol for about a year now and I take the MTX and Enbrel on Mondays but this happened before that....but it dawned on me a minute ago that both of my sisters have Multiple Sclerosis but I'm hoping that it's a pinched nerve or nerves, it'[s really good to see you Janet, I hope all is well with you...

Hi Farinelli, actually, I've been having trouble urinating for over two weeks now and my left foot went numb on the very same day and I had a little fluid on my ankles, which is a HUGE red flag for me, I've never carried fluid in my life, except when I was pregnant with Brandon, I developed toxemia...he was 3 weeks over-due but anyway, I went to the E.R. with that complaint a few days before Mom died, I left her bedside and went to the E.R. and sat for 6 hours or so to have that looked at and that new Dr. did absolutely nothing, he didn't have a clue....that's why I won't go to the E.R. ....so I got an independent doctor a year ago and I go there when I want to get a really good second opinion, he's great and I just put in a call to him....I went to him last week about the one foot being numb....

Oh wow Chris, I certainly hope that I'm not having cardio-vascular trouble....I'm so afraid of that, I was hoping for more like a bulging disk....thanks, big hugs....

Dear Chelle,
I have not had it that extreme. I have fallen becuase of the lack of feeling and thinking my legs were movng when they were not. Yep, give the young Dr. a chance. If ya got insurance, he will learn alot from you.
I have found if it is spinal, and I twist or role, I can wake things up a bit. If it is internal sutff, it does not seem to matter...
Tell me about your puppy- one you are going to keep?

Gosh, I wish I knew what it was, but whatever it is, it doesn't sound good. If you have insurance, go see someone quick; I wouldn't delay or mess around with that degree of numbness in my limbs. Hang in there and let us know what happens.

Michelle - please go to a doctor TODAY. Hopefully a competent doctor, but a doctor, and do not leave until they take action. It may be something simple like low blood iron but you can't carry on if you are also afraid to go to sleep.

Also - when all these current crises are past, I think you should get reassessed about all the different meds you are taking. There are lots of risks/side effects from long term use of BP and cholesterol medications. The docs are pretty quick to hand these out when they may not be necessary and there may be other things you can do to manage blood pressure and cholesterol.

As someone else said, it seems unlikely to be spinal cord because your upper and lower limbs are involved. That would require pressure/damage in your neck region.

I'll bet the numb foot is linked and, obviously, you can't rule out MS because of your sisters. However, I didn't think MS started in such an extreme way. Your sisters should know all about it and can give you advice.

Big hugs to you, sister. You are very important to us. Hie thee to a doctor quick as you can.

love and hugs

I agree with Craig, I know that cauda equina can effect the bladder and you said you had troubles urinating. I would check that out asap... Take care girl !!

Angie

aloha michelle

i'm with the others on this...see a doctor TODAY...don't wait till monday.

good luck

i've have the numbly tingeleys but nothing this bad...sounds serious

Michelle.
Another thought (wow that hurt) It could be to do with every thing you have been through these last few weeks the body has strange ways of reacting to shock and stress.
Kevin

Stress was sort of what I was thinking....that and the statins...and the BP meds. Maybe they are all ganging up on you at once? Go to the doctor. Don't wait.

Michelle,

How terrifying! No wonder you're scared, hon. *hugs*

I had something similar when I pinched the spinal nerves at my kinda broken C3-C4. PLEASE see a dr right away--even if it's Doogie Howser--because this is nothing to brush off!

Marna

Thanks Lon, I'm waiting for my second opinion doctor to call me, they usually return calls in the afternoon...it was very weird....

I will get it looked at by this evening at the latest....I'm trying to hold out for a call back from Dr. K...if his office hasn't called by 5, I'll go to the E.R..... Thanks....

Hi Wendy...yes, I'm on a lot of meds, I agree, I may have even forgotten to list a couple... MS...my sisters presented differently....Sandy was sitting at her desk and went completely blind suddenly, the rushed her to Houston and lesions showed up on the cat scan of her brain.... they put her on steroids and her vision came back after about a month, Pam had a long, long list of mild symptoms....Sandy had 10 bad years and then she went into remission and has stayed that way for the last 7 years or so....Pam's disease is progressing very slowly and doesn't interfere with her life too much but I have no idea what meds she's on, if any....she's the nurse that is working at Hermann Memorial in H-town....now the neck does give me trouble and I've had a lot of headaches lately...I figure that is stress though....thanks, you've brought up some very good points.....

Thanks Angie....yeah, that is interesting, I let my rheumy know that I'm having this trouble or rather, I left a message at the office, I also put in a call to my primary care physician and my second opinion doctor...if none of them can help me, I'll go see Dr. Doogey....

I will Ben....I promise, thanks....

Well Kevin, it may very well be stress....I'm certainly stressed out....I just can't wait for it to stop....I keep trying to make myself do relaxtion exercises but as soon as I stop, I'm all tensed up almost immediately....

Yall may be right rumble, I've heard that stress can manifest itself in the body and that it can really make you sick....and I'm not going to make it wait....

hi Marna....wow, how do they get the nerve unpinched? I'm thinking along those lines but I'm not sure...actually, I think this is the first time in a very long time that I had something going on with my body and had absolutely no idea which direction to turn towards....I'm stumped....I won't brush it off though...promise....

Oh Michelle,
No advise here except to please see your dr. The closest that I have had to that has been several times lately that I have awakened to not being able to turn myself over in bed. After a while, it seems that my strength returns. I don't know what that is either.

I think of you so much.

Hugs and Blessings.
Possi

not to scare you but in advanced AS this can sometimes happen
http://www.spondylitis.org/about/cauda_equina.pdf

Michelle, I hope you feel better by now! Please get some rest as deep sleep will help your body heal. I do not have advice but offer my support. This sounds like something that happened to me when I was very young, maybe about 4 years old. I woke up and could not bear weight on my legs. My mother had me rest, and then brought me to the hospital where x rays were done. By the end of the day, I was able to walk out of the hospital, and I can only imagine how my poor mother felt, all on her own. I will never know if my legs fell asleep and then they hurt or if I had a virus--but I hope you get some answers and feel well, keep posting please!
Jan

I hope you've had the chance to go see a dr my now even if it was Doogie. I'm praying its nothing serious. Your in my prayers hun.

HI Michelle,

Sorry to hear about this experience. If related to AS, only thing I can think of is neuropathy. I had it on and off for a few months... tingling feeling in arms / legs... they would feel cold as well. One night in bed was so bad the tingling I went to emergency and finally I learned it was neuropathy.

Hope you can find some answers,

Tim

nobody else has mentioned it so thought it might be worth mentioning that numbness and tingling in the hands and feet is a classic vitamin b12 deficiency symptom. might be worth getting levels tested. just adding it to the list of possibles.

Just checking . Any word yet? If it's a pinched nerve,would streching help?
I'll be checking hope you got to see the dr.

In case this sounds familia? ... I can not stand straight getti g out of bed and can not get to the bathroom fast enough as it seems like straighteni g up pushes on the bladder.

Hope you get some resolve fast.
I wish you Best of luck........
Lucy
Lucy

It's just that it was so strange.....I did forget that I started taking Ambien CR a couple of nights before that happened...maybe I slept so hard that I didn't move enough during my sleep....but still I worry that it may be circulation...I just got a call back from Dr. K's nurse, she put me in for 3:20 this afternoon....Yesterday I finally went to sleep around 4p and I missed her call...Joyce, did I tell you that I had a dream about you? In my dream, you bought the house next door and I planned a party to welcome you and a bunch of our fellow KAers came...well, I decorated the pool patio and got everything ready...food, drinks, music...and then I went into my room to shower and dress...well, my legs went dead again and I couldn't get down there, I tried to see everyone but from my vantage point on the floor, I could'nt see any faces at all...it was very frustrating....

Thanks Linlan....I printed this article and I'm going to take it with me to my appt. with Dr. K this afternoon....and if I haven't told you yet...Welcome to KA!!

Hi jan...wow, I bet your Mom was scared....it's hard to see your babies hurt or sick...I slept from 4-9 and then went back to sleep around 10 and got up at 9...but I didn't take the Ambien and I woke up as usual...evey 2 hours and changed position because my back was killing me...I'll let yall know what Dr. K says this afternoon....

Thanks pianoplayer....no, I fell asleep, missed the call but I'm going this afternoon and I'll let yall know what he says....

Wow Tim...my Dad has neuropathy, I just started him on LDN for it....sorry to hear about your experience with it....thanks, I'll ask Dr. K about it today and kiss little Master Mateo for me....

Thanks jroc...I'll add that to my Dr. K list too....I take a multi vitamin with the B complex in it but I'm not sure if that means anything because I've always told people that the best way to get your vitamins is through diet not supplements...

Hi Lucy...no word yet but this afternoon I go to the good Dr....I have no problems with getting to the restroom in time...not because of my speed but because I'm having trouble urinating....it's like someone cinched me off at the waist...

Michelle,
My dear friend, you should go to the doctor right away. This maybe an infection that needs treatment now!
Take care of yourself girl! We love you.

Sorry you had this scary experience. I had very similar thing happen and ended in the back of ambulance for a late night jaunt to ER knowing full well tha tit was probably an AS side effect--- what Tim correctly classified under the heading of neuropathy.

I never got a great explanation on why I got the sensation so scary that night. SO I have no great ideas to offer. Just be careful not to always assume it is AS caused and get someone to give you a medical lookover just in case.

Hi Lon...I will take care of myself and...I love yall too!!

Wow, not that I'm glad that it happened to you Steve...but I feel better about it knowing that it's happened to someone else and you lived through it... Dr. K ordered a brain scan today, he said that he thinks it may be MS, he said that my legs and feet weren't really asleep but my brain told them that they were.... I certainly hope that he's wrong and you're right Steve....

Oh Michelle, Why the heck not-huh? So sorry. What a nightmare. I have no idea, just as so many, yet all their suggestions make sense!

Please, for all of us who care about you so much, please get seen soon. We will all be waiting on pins and needles to find out. Not only that, but one of us may have a similar affliction one day and can do with the advice!

Please be safe XOXOXOXOXOX Keep us informed!

Hi mamallama...I just hope that the brain scan doesn't show anything...actually, I'm praying that it's a one time thing but I'm finding it hard to type tonight, my arms and legs feel like they're going back to sleep...but yeah, why the heck not!? Thank you so much, I will keep yall posted....

Glad you are getting some testing done, but hope it's not MS. Mostly hope it doesn't happen again. Has to be scary. Hugs to you. When is the scan?

Michelle, please don't take the Ambien any more. I love your dream. I would love to be your neighbor.

My husband started Ambien last year and he had so many weird things happen. That is when he fell over into the bath tub and when I tore up my hip getting him out. He couldn't remember a thing that happened and his legs wouldn't hold him up at all. He called it his "stand up, fall down" medicine.

I took it a few times and couldn't remember what happened the day before.

For some of us, it is a nasty drug.

I have had falling when I couldn't tell where my legs were. It was all from my spine but I have never had it in my arms.

I continue to think of you and pray for you.

Hugs, sweetie.
Possi

Thanks rumble...I don't know when the scan is yet, Dr. K's nurse is suppose to call me and let me know sometime today...

Joyce, I'm so glad that you shared that with me, I was wondering if it could be the Ambien but the doctor said no, he told me to keep taking it but I'm a little afraid of it....I would love for you to be my neighbor too...it's a beautiful home and it's got a good price on it....