Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group FOOLING THE DOCS

I havent posted for awhile.Our AS family has growen.WELCOME to all the new members.
I have been living at the docs or the hospital lately .I broke C1at a young age and now its the only joint not fussed all the way.It broke in half and when they fused it to the lower one its a little crooked.(my heads on crooked).Now due to the AS it narrowing and the calcification is causing a lot of nerv problems that affect most of my body.Some time at night when i laying down it seems like some one turns a switch off and on i go black.Has this happened to any one else.My arms legs go numb you could stab me with a knife and i wouldnt feel it..
my wife Liz and sons are very supportive right now.Makes me very thankful every day i get up.The depression with all the pain and flustrations gets a little hard to bear some times but i am thankful the KICK AS is hear so i can vent my problems.
Bradford

To the world you may be one person,but,to one person you may be the world.

Hi there Bradford

Sorry to hear you having a such a rough time at the moment. Pre-Remicade I used to have similar problems. Almost always when I slept on my back, my arms would go numb. The only position that worked was sleeping on the side. Fortunately those problems disappeared after I began with Remicade.

/Mattias

Thnks Mattias.Iam fused solid in my back and chest and neck except c1 i cant sleep on my back only the sides.i had bad reaction to remicade so i just stay on indicin 75 sr and the pain meds.
Bradford

To the world you may be one person,but,to one person you may be the world.

Hey Bradford,

Sorry your having so many problems, My neck isn't fused but I can relate to your problems somewhat. At times I get a popping feeling in my lower spine and lose the feelings in my legs. It can last for up to four hours then it will gradually come back.
My MRI's show lumbar nerve root and thoracic spinal compression. For the passed year or so my arms and hands go numb, which my PCP thought might be coming from carpal tunnel to start with sending me to physical therapy without any result. I have two ruptured discs in my neck and the neurologist feels most of the numbness is most disc related than it is AS related. My AS is a bit different than the way it was explained to me. My S1 to L3 are fused as normal with AS, but now the rest of my vertebrae have spurs and nodules on them with none of them being close to fusion.

Besides the numbness how does your skin feel when it gets touched? I had an episode last year where even my shirt moving felt like my skin was on fire or raw. The doctor said it was neuropathy caused by bone to bone pressure on a nerve(s). He prescibed Neurontin which helped take the burning feeling away.

Sounds like you have a great family there with the support you are getting from your wife and sons. It is always great to hear about someone's family supporting them through what we go through.

Have a great day,
Brent

Hi Brent.my skinfeels like a scar .I went through the neurontin thing didnt do any thing for me exept make me sick.Sorry to hear about the popping in the spine that hurts,It seemed like i fused quick,By the time the dioed me i was half fused.The support i get from my family is special i am very blessed to have that.So far my sons have had no problems.there all over 20 now .This place is like one big family.
Bradford

To the world you may be one person,but,to one person you may be the world.

Im so sorry for all the pain that you are going through!!!!! I always wake up with my arms asleep, i havent had any problems with my legs, only my hands and arms. Can i ask you a question. My doc. just told me that i have four vertebras that are fused together, how long does it take for everything to fuse, im only 20, does it happen this soon.

Hi Tammy,

As you will find out soon AS treats everyone different, there is no set time frame for fusion and no guarantee your spine will totally fuse. I was diagnosed in 1986 and only have three vertebrae fused. I have growths of AS on every vertebra throughout the rest of my spine but none are close to fusing.

On the other hand a friend of mine in California had her spine completely fused between 5 and 6 years. Many of us here have other areas affected like the pelvis, hips, knees, ankles, shoulders and ribs. AS is a disease where you kind of have to go with the flow, as it sets it's own rules on what it will do to your body.

Welcome aboard, you have come to the right place to find information and support from others who know what you are going through.

Have a great evening,
Brent

Hi Tammy

If you are only 20 and have 4 fused vetebrae it would seem your AS is fairly aggressive. Maybe some sort of event or dietary concern made it so active at such a young age but I would hope your Doc is getting you Enbrel or best options available. Get yourself as good an exercise routine as possible.

My AS fused both my hips by 22. The options available to me 20 years ago were far fewer so you do have lots of hope.

WELCOME and best wishes.

 
stevec-they also serve who stand and wait

Tammy it took about 6years but if i would have known what AS was soner i think it would not have been as bad.The new meds they have out now help alot.No matter how bad the pain you must stay active.I know John ( CheerfulL ) used to crawl down his stairs to get to the car and every one hear has a story that makes us stronger.So when your down start posting there is a lot on help and info hear.
Bradford

To the world you may be one person,but,to one person you may be the world.

Oh Bradford, you poor dear!!

How scary it must be to all of a sudden not feel anything. I will certainly keep you in my thoughts and prayers!! Keep us all posted on your progress, as you are well loved here at KA!!

Hugs~

Stacie