Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Question about symptoms

I'm a late poster, wasn't able to get on line last night. Yep, sounds like AS to me. I used to have terrible pains in my chest, across my back, and some days my neck just wouldn't turn without a lot of pain. As far as numbness and tingling, I also have that, if I sit for too long - - sometimes driving a car -- my feet turn numb. I know what is causing it, though, because I ruptured a disc almost two years ago and the x-rays showed a really bad mess that's supposed to be my spine, years of inflammation - - like you, I'm only fused in the SIs -- have taken its toll, and I have shrunk almost 3 inches in as many years, loss of disc height and lots of nerve impingement. So while it may not be AS per se, it's related. Get it checked out, your back may be in the same shape as mine, hard to see daylight between the vertabrae in my lumbar spine. When the disc went I lost the use of my right leg for about six weeks, it wouldn't support my weight, like the leg that wasn't there, but the pain was something else, like someone was pouring hot water down the front of my leg. My hands also get numb and tingly. Hope this helps.

Cheryl

Dogs don't care if the house is messy

Hello and welcome Man from MO!

I have had some of your symptoms. I have had the "it hurts so much to breathe I wish I could stop" pain in the upper back, reaching around the side of my ribcage, and on nightmarish occasions extending around the front as well. At times like that I have trouble reaching up into the cupboard to get a coffee cup. This is serious stuff when it interferes with my coffee consumption!! I can't even prepare a meal because it is torture to extend my arms to work at the kitchen counter when I am like this. My kids and cats would starve if we ever lost the can opener!

I went through four very bad years with frequent upper back and chest pain, bursitis in my right hip which made it difficult to get around with two canes on some days, lower back pain, extreme knee inflammation and pain, and so on. I had difficulty getting sleep, only able to stay in bed for two hours at a time. We all know that story.

The good news is that for the last two years things have been better. That is the way it seems to go with this disease. You can have long periods of living in hell, but you can also have long periods where it is not so bad. I am not pain free, but the bursitis in the hip is gone. My hip still bothers me somewhat at times, but not like before. My knees are helped a lot by the NSAIDs. My upper back and ribcage still hurts from time to time, but not as bad as before. From time to time my SI joints act up, but I can usually keep going.

It sounds like you might be in the middle of a bad time right now. I hope that what I have told you might give you hope, knowing that you are not likely to always feel this bad. I hope things get better for you soon.

I can't comment on any of the nerve stuff, because I have not had any symptoms like that. It is wise to get that checked out as far as you can.

I went for a bone scan, and it was during a good period, and so nothing showed up in my back. My knees, even though they were feeling not too bad, showed up as a major hot spot of inflammation. My doctor said that just because I did not have inflammation in my back at the moment of the bone scan, this does not mean that I have never had or would never have inflammation in my spine. A bone scan is of limited helpfulness. With waiting periods, who knows if you will catch your spine on a good or a bad day? On the other hand, a bone scan is not an invasive or highly unpleasant procedure. They inject something radioactive into you, but other than the injection there is no pain associated with the procedure, other than that associated with having to be still for a while.

I hope you find your answers. You can always come here for support. I look forward to getting to know you better through your posts.

Val.

Hello Mike,..... W E L C O M E !

Your additional symptoms don't sound unusual for AS (to me.) I have experienced the tingling numbness in forearms and hands, plus both feet. For me this usually happens when I'm horizontal or sleeping (it sometimes wakes me up.) I rarely feel this way throughout the day, but when I do, it's very mild and only in my hands. I have not experienced the electric-shock pain you describe,... but had the searing-hot pain in heels for quite a while,... but now it's gone again. Never had the involuntary limb movement symptom.

I've had spells of lightheadedness just in the last few years (I too am 40.) At first I thought it was poor circulation - but after reading so many others in here feel the same - I've come to guess it is most likely AS related. On 2 occasions I had an inner-ear disorder (doc described as a cousin to vertigo) that lasted for a few months then disappeared. I never considered that it might be AS related at the time.

Seems like a leap of logic that inflammation may play a role,... adding pressure to nerves.

I had a full skeletal bone scan at 29. And like Kat said, it wasn't for my benefit (I knew my level of inflammation) but it aided my doc in treatment decisions. Take care,... and hope you hit a smoother patch soon!

mig

Hey!!

Everything you have described could be me, big time....AS is systemic, my eye doc diagnosed me when I was found to have iritis...it does affect the body in many ways....

I've had many side symptoms, where I even thought I was having heart attacks, that are AS....

I'm there with you, will be 39 in a month!! Ouch!!

Peace
Linc

Linc O'Brien

Greetings Mo

I get numbness in my hands , especially while driving .
I also get light headed and spaced out and my face can go numb , this tends to come and go .


I also have moments when my memory is affected and other cognitive difficulties , like math and giving directions . This can be really annoying when I am serving customers .

These symptons are usually present when my shoulders are sore and tight and my neck is sore and stiff , right up the top where the spine and skull met .

Do have these problems too ? .

My specialist say's it not A.S , but he's a narrow minded &#*%$ and I have an appointment with another Specialist .

I am also looking at other causes : like Fibro Myalgia ( I don't know much about ) , Chronic Fatigue Immunity Disfunction Syndromme which some of my symptoms match , like the phantom symptons that come and go and also eye problems and fatigue . There is also a condition associated with C.F.I.D.S called " Chiari Malformation " : compression of the upper spinal coloum , which interfers with signals sent to the brain .

I'll keep ya posted

Calixto