Scleroderma Information » Scleroderma » Progressive Systemic Sclerosis
Question:
Hi everyone, I have OA, FM, and DDD. This is going to be a long post, because I need to lay out the facts, so you all can help me with my question. Last year, I developed problems swallowing, which kept getting worse. Went to the GI Doc who diagnosed achalasia (sp?) which is the failure to open of the sphincter between the esophagus and the stomach. A manual dilation was done without success, so a balloon dilation was performed. A horrible thing happened, my esophagus tore on the back side and I bled internally for 10 hours before I could convince anyone that I was bleeding internally. My son, who is built like a big-time football tackle, went into the hall and physically dragged a doctor into my room. At that time, I was so white with big black rings around my eyes, that it didn’t take much to know I was dying. The surgeon told my husband that I didn’t have much of a chance, but after 5 1/2 hours of surgery and days in ICU, I made it. I later discovered it is very rare to survive that. I’m too mean and ornery to die. Now less than a year later, my problems swallowing and the acid reflux are back with a vengeance. I can’t believe the restructuring of my stomach and esophagus didn’t permanently fix the problem. Then in the latest issue of Arthritis Today, I saw something that makes me wonder if I might not have progressive system sclerosis. It described the symptoms of PSS as GI problems, the exact same problems with the esophagus that I have described, constipation (which I had attributed to drugs), and that it can affect other internal organs. This sounds like a really serious condition, but it seems to fit my problems to a T. For those who have this disease, can you tell me how you were diagnosed and what the treatment is. For the docs on the list, how do I go to a doctor and tell them I think I know what is wrong and how do you diagnose this disease since it’s entirely internal. I can’t face another surgery like the last one…is there any treatment for this disease? I already take Prilosec and Pepcid AC (prescription strength). Is there anything else I should be taking? I feel like my insides are on fire. BTW, Ihave not found a good RD. When all my symptoms started, I went to a RD at a university teaching hospital (thought he should be good) and his only treatment was: lose weight (guess my head is too heavy for my neck…any good ideas on how to reduce your head 
, do water aerobics, and take Ultram (didn’t help at all). This so discouraged me, I haven’t gone back to him. I went to lots of surgeons (neuro +-ACY- ortho) looking for a quick fix, but to no avail. My condition has deteriorated rapidly and I’m really scared about this GI stuff. Any help anyone can offer would be really appreciated. I feel like I’m dying and don’t know how to hang on anymore. Please write me privately if this isn’t appropriate for the list. Again, TIA for any help. Lynda H. lhendrix+AEA-ix.netcom.com
Response:
Lynda Hendrix wrote: > I have OA, FM, and DDD. This is going to be a long post, because I need to lay out the facts, so > you all can help me with my question.
What is DDD? I have scleroderma and FM. >snipped… > Now less than a year later, my problems swallowing and the acid reflux are back with a vengeance. I > can’t believe the restructuring of my stomach and esophagus didn’t permanently fix the problem. > Then in the latest issue of Arthritis Today, I saw something that makes me wonder if I might not > have progressive system sclerosis. It described the symptoms of PSS as GI problems, the exact same > problems with the esophagus that I have described, constipation (which I had attributed to drugs), > and that it can affect other internal organs.
Those can be some of the symptoms. It seems to be unusual for them to occur first or alone, but it is possible. Lots of us have Raynaud’s (80-90% is the last estimate I’ve seen) and many have reflux. I would guess that most have some skin tightness, especially early in the disease, and in the hands. Of course, this is all generalities. There are certainly those who have had all internal involvement. > This sounds like a really serious condition, but it seems to fit my problems to a T. For those who > have this disease, can you tell me how you were diagnosed and what the treatment is.
Yes, internal involvement is very serious. Have you been scoped recently? I should think that scarring bad enough to cause this kind of problem would show. If not, someone else can help me out here and say if they biopsy the GI area to check..? I had a skin biopsy. My blood tests are inconclusive, but with the biopsy and symptoms (Raynaud’s, reflux, tight skin, hand contracture) I was pretty classic without ‘em. > For the docs > on the list, how do I go to a doctor and tell them I think I know what is wrong and how do you > diagnose this disease since it’s entirely internal. I can’t face another surgery like the last > one…is there any treatment for this disease? I already take Prilosec and Pepcid AC (prescription
I had no relief from Pepcid. I take 2 20 mg Prilosec a day, sleep on a wedge, no caffeine and watch other dietary triggers (chocolate), try not to eat a lot at one sitting (Thanksgiving…ugh!) and use Maalox occaisionally. Also, I have to be very careful of NSAIDs – ibuprofen, etc. Relafen burned my gut like crazy. > strength). Is there anything else I should be taking? I feel like my insides are on fire. > BTW, Ihave not found a good RD. When all my symptoms started, I went to a RD at a university > teaching hospital (thought he should be good) and his only treatment was: lose weight (guess my > head is too heavy for my neck…any good ideas on how to reduce your head , do water aerobics, > and take Ultram (didn’t help at all). This so discouraged me, I haven’t gone back to him. I went > to lots of surgeons (neuro +-ACY- ortho) looking for a quick fix, but to no avail.
Go to an RD familiar with SD. The Scleroderma Foundation can help you locate one – http://www.scleroderma.com > My condition has deteriorated rapidly and I’m really scared about this GI stuff. Any help anyone > can offer would be really appreciated. I feel like I’m dying and don’t know how to hang on anymore.
Hang in there! Hopefully more info will show up here. In the meantime, are you still being treated by your GI doc? Make sure she/he knows that you are still having major problems. No doc wants you to be in that much pain. — Amie
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