Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Im confused.............

Buggie, I just read your post again. I am having TERRIBLE esophagus spasms and muscles all across my chest. It hurts so bad and I am having trouble swallowing (get afraid to try). Does the Remicade cause this? I thought the MTX was causing my Reflux and it did get better after quitting it but these spasms are worse than ever. I will be glad to hear from you. I need some more info. My rheumie of course doesn't think it is the Remicade but I do.

Thanks.
Possi

I am having numbness in both of my legs, it runs down the back and out my foot and if I cant get up and move around my foot and lower leg will go numb. I believe its sciatic, I see my doc the 25th and see what he thinks. It happens to both legs but never at the same time. It always happens when I sit in one position for too long like driving, or at work. From what I've read it sound like sciatic. I hate to hear when doc think its in your head!!! I think thats a cop out and just lazy!!! I hope you can find some relief...


Angie

Hi Scotty,

Good to meet you. I've been on this site for a few years and am not very active on it, but do check in from time to time. Your question hit home with me.

I was on Enbrel for a couple years until it quit helping me. I've been on Remicade ever since. Everything you describe I've been through while on both drugs. The spasms, pain, twitching and numbness come and go and move around for no particular reason. We have a disease that is very uncomfortable and I don't think any drug or combination is going to keep us pain free forever or for very long for that matter.

My doctors have never told me it's all in my head though. It's more like they tell me it's just part of this crazy illness that they can't understand yet. There's still a lot of unknowns about this disease.

I'm just very thankful for my good days and try to make the best out of the bad ones.
Hang in there my friend hopefully things will get better.

Fred

We have a shortage of doctors in my area. No one is accepting new patients right now. I've been reading alot lately researching Remicade side effects and found out something very scary. Remicade has been known to cause MS in some patients and I'm worried that this might be the answer to problem.

Scotty...

Hey Scotty,

I have never used Remicade but have experienced all the symptoms you are describing sounds more neurological. My wife would laugh and joke when those butt cheek spasms would hit, but it was not the lease bit funny to me at the time. I would say you are suffering with a bout of sciatica and maybe your doctor could give you something to help you out. Below is an excerpt from a webpage on sciatica, maybe it will help.

Brent

Sciatica is a symptom of a problem with the sciatic nerve, a large nerve that runs from the lower back down the back of each leg. It controls muscles in the back of your knee and lower leg and provides feeling to the back of your thigh, part of your lower leg and the sole of your foot. When you have sciatica, you have pain, weakness, numbness or tingling. It can start in the lower back and extend down your leg to your calf, foot, or even your toes. It's usually on only one side of your body.

Hey Scotty,

I used to have muscle spasms in my lower back really bad that would lift me off the bed during the night they were that bad. Since being on Enbrel, and now Remicade, I have not had those spasms, however, I have had some left rib spasms that lasted until I took two extra strength Ibuprofen and then they would go away for a couple of hours. I have noticed that if I push myself too hard (like if I'm trying to clean or something physical), my rib spasms will return. Haven't had any spasms in my legs though...just ribs and back.

Have you talked to your doc about this?

All the best,

Trina

Scotty, I was diagnosed in part because I was having massive muscle spasms in the left side of my torso at night. I would be lying on my side and wake up screaming in pain as the spasm lifted my body off the bed. Four or five times every night.

I also get the sciatic nerve action. My feet go numb if I sit the wrong way for too long (the 'wrong way' is arbitrary, by the way ... it depends on the day) and sometimes my entire leg goes numb. Remember when I broke my foot last year? Stood up, my leg had disappeared from the hip down - weight went forward onto the foot that was hanging upside down and snap.

My baby toes spasm on a regular basis.

The thing is that I have been experiencing all of these for years. Pre-Remicade. I think they are a part of living with AS. That said, if you are experiencing an increase in these things then you may be reacting to the Remicade. It bears a serious looking into by a doctor who knows more than 'it's all in your head'. I know the docs are scarce in your area, but is there any chance you can be referred to a specialist in T.O., maybe? At St. Mike's, or Toronto General (anywhere in the University Health Network, actually)?

Many hugs,

Many hugs,

Boy, can I relate to the foot/toe spasms. I looked down last night as I bailed out of the recliner and my leg was spasmed from the knee down out one directon and my toes were every which direction. Talk about hurting and a funny looking leg. They do that at night also and I hit the floor unless it is so bad that I can't and I have to "hit" hubby and wake him to massage the spasms out.

They are no fun. I was wondering if they could be Remi related just like I am wondering about my bad esophagus spasms and reflux. Any ideas about that one?

Been thinking of you.
Hugs.
Possi

Hey man,
4 hours to 5 hours of twitching? that's pretty scary. Remicade has been noted to effect the Central Nervous System in a negative way, extreme muscle spasms can be linked to the CNS. I would go see your doctor right away to find out what the problem is.

I don't take remicade. I do have much more frequent numbness than I did a few years ago. I have a hard time keeping my hands from falling asleep. If I'm lying on my back with my hands one my chest they often fall asleep. I also have twichy muscles. My calf muscles twitch a lot more than I like and I have cramping a lot more these days, especially in my hips. I also get bursitis from time to time too (inflamation of the bursa - fluid filled sac near major joints), it doesn't take much to get inflamation or swelling. I have to be careful. It's a real drag. I once had such severe pain in my knee (while sitting in a movie theater) that I started to cry, once the movie was over I had to hobble around in agony on my stiffened knee until blood went back into my leg and the extreme pain went away. I bet others also get tendonitis, shin splints and those nice crunchy cartilage bits in their joints. My cousin has really bad Rheumatoid Arth and his shoulder spasms so bad it actually pulls right out of the socket. I think this sort of thing is common for us. I think the only way around it is stretching, hot (for aches) and cold (for swelling) packs, NSAIDS, water for circulation (water reduces cramps and spasms), healthy diet, possible accupuncture or physio, therapy, calcium (can also help reduce cramps and spasms), relaxation (sleep and no stress) and massage. Stress is commonly linked with tightness of muscles and spasms. My bone scans are normal and my inflamation levels are way down, but I still get cramps and pain. My doctor doesn't seem to think it should be like this and I'm not sure if he believes me.....kind of a drag. I have bursitis in my elbow at the moment that's so bad I can't bend my arm....bloody hurts to touch, and all my tests are normal and honestly I haven't done anything heavy lately. Just when i think I have it licked, something creeps up and reminds me....

If it turns out the spasms aren't from Remicade, try some of the stuff I mentioned, they seem to help me.