I need some input from others. I have LUPUS and it's horrible. However, it seems that anything else that comes about is quickly attributed to the Lupus. Here is what's going on and I've been going through just this part for 4 years and I'm only getting worse.
Shortness of breath began slowly and progressed to the point of a tracheotomy on Dec. 17, 2008.
Neck and back pain ongoing resulting in cervical neck reconstruction in Feb. 2007 in which I have a titanium cage. Lumbar laminectomy in Jan. 2008. Continued HORRIBLE pain in both areas. The neck surgery left me with a right paralyzed vocal cord which the ENT blames for the inability to breathe. Although, the problems started before the surgery...so the surgery just didn't help the issue. I had 7 surgeries on my vocal cords to try to remedy this before the decision of a trach.
In the meantime I have seen 3 pulmonologist, 1 cardiologist - 2 times, 2 neurologist, my rheumatolotist and my regular pain specialist. Nobody can seem to find anything that should be causing this much pain and inability to breathe. My oxygen count was suffering so it's not psychosomatic.
Also, going on is greatly out of whack liver results and some pretty decent regularities in the vascular portion of my blood work. About 1 1/2 years ago the veins on the left side of my chest and arm began protruding GREATLY. It looks like a road map. About 6 months ago my left arm, hand, and foot began swelling and going numb. Each morning they are numb...100% of the time. My left foot shows horrible vascular looking things on the ankle portions that look like a huge bruise but it's really these tiny veins that are just clustered on the inside of my ankle where the swelling is. Other random spots of this type of cluster is showing only on my left leg.
So...my pain specialist says he thinks I might have "thoracic outlet syndrome". I called my neurosurgeon and he ordered 2 MRI's (cervical and lumbar) in which I had on Wed. so I'll hopefully know if something is wrong in those areas by Monday.
My questions are...Why can't anyone figure this out? Why isn't anyone thinking outside the box? What am I or are they missing? Even with the trach - I am still not able to breathe like I should and so the circulation is likely down and I can't even walk across the house without being out of breath.
One last thing...in spring of 2006...my body randomly started rejecting my supplemental hormones of thyroid and estrogen. The labwork showed only traces of both. I also gained 50 lbs. in like 4 months or less. I am a VERY healthy eater and until I got sick..I exercised very religiously. Now, I slowly continue to gain weight yet I still continue to eat healthy.
I don't know if many things are going on or if (maybe a miracle) it's just one big thing.
But, I can't keep doing this and I'm at my emotional wits end and I'm so completely tired of hurting. I am on a pain regimen of Kadian twice daily and MSIR for breakthrough. I asked for the suckers/lozenges for BT but he said only cancer patients are allowed that. I am doubting that...anyone else know anything about that? I can't keep going up on my kadian because I don't want to be a zombie. I am totally sick of being sick. Help!!! God doesn't seem to be hearing me much these days. Although, I'll never give up on Him!!
Shortness of breath began slowly and progressed to the point of a tracheotomy on Dec. 17, 2008.
Neck and back pain ongoing resulting in cervical neck reconstruction in Feb. 2007 in which I have a titanium cage. Lumbar laminectomy in Jan. 2008. Continued HORRIBLE pain in both areas. The neck surgery left me with a right paralyzed vocal cord which the ENT blames for the inability to breathe. Although, the problems started before the surgery...so the surgery just didn't help the issue. I had 7 surgeries on my vocal cords to try to remedy this before the decision of a trach.
In the meantime I have seen 3 pulmonologist, 1 cardiologist - 2 times, 2 neurologist, my rheumatolotist and my regular pain specialist. Nobody can seem to find anything that should be causing this much pain and inability to breathe. My oxygen count was suffering so it's not psychosomatic.
Also, going on is greatly out of whack liver results and some pretty decent regularities in the vascular portion of my blood work. About 1 1/2 years ago the veins on the left side of my chest and arm began protruding GREATLY. It looks like a road map. About 6 months ago my left arm, hand, and foot began swelling and going numb. Each morning they are numb...100% of the time. My left foot shows horrible vascular looking things on the ankle portions that look like a huge bruise but it's really these tiny veins that are just clustered on the inside of my ankle where the swelling is. Other random spots of this type of cluster is showing only on my left leg.
So...my pain specialist says he thinks I might have "thoracic outlet syndrome". I called my neurosurgeon and he ordered 2 MRI's (cervical and lumbar) in which I had on Wed. so I'll hopefully know if something is wrong in those areas by Monday.
My questions are...Why can't anyone figure this out? Why isn't anyone thinking outside the box? What am I or are they missing? Even with the trach - I am still not able to breathe like I should and so the circulation is likely down and I can't even walk across the house without being out of breath.
One last thing...in spring of 2006...my body randomly started rejecting my supplemental hormones of thyroid and estrogen. The labwork showed only traces of both. I also gained 50 lbs. in like 4 months or less. I am a VERY healthy eater and until I got sick..I exercised very religiously. Now, I slowly continue to gain weight yet I still continue to eat healthy.
I don't know if many things are going on or if (maybe a miracle) it's just one big thing.
But, I can't keep doing this and I'm at my emotional wits end and I'm so completely tired of hurting. I am on a pain regimen of Kadian twice daily and MSIR for breakthrough. I asked for the suckers/lozenges for BT but he said only cancer patients are allowed that. I am doubting that...anyone else know anything about that? I can't keep going up on my kadian because I don't want to be a zombie. I am totally sick of being sick. Help!!! God doesn't seem to be hearing me much these days. Although, I'll never give up on Him!!