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#1 Sandy

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Posted 12 June 2008 - 02:35 PM

I have not yet been diagnosed with "scleroderma" although my doctor keeps saying that I have to have 3 or 4 involvements before being diagnosed with scleroderma. OK, whatever.....so I'll wait for the diagnosis. Currently it's classified as "undiagnosed mixed connective tissue disease".....so.......I definately started with shortness of breath episodes (with fasiculations) so they thought motor neuron, which was ruled out by a number of hospitals (Mayo, Hopkins, etc)....on and on I go. Started out with really bad rashes on the weirdest places on my body (only one side, gross, purple rashes, raised and no one would go near me). Also went to ER, didn't know why two of my fingers turned purple in the middle of summer! It is all making a connection now.....from what I've been reading about scleroderma etc; Also been diagnosed with Hashi's, spasms in my trunk area, stomach. etc.

but the most disturbing now, is that I've had for years that I explain to doctors who think I am a hypochondriac is that I have a hardness in the muscles in my throat, going down to my stomach. I explain it as when the muscles don't relax, they just are stiff. Like when someone or "WHEN I USED TO" be able to belch and the muscles were smooth, now they are stiff. I have to hold my stomach and press on that muscle in my abdomen to let out trapped air in there. I read thinking it was a dystonia problem but the "expert" says NO! I do have pulmonary problems rthat I need to have furthr testing on and now have an appt with a good gastro (although not known if he knows about scleroderma), but I've been afraid to go under anesthesia for this pulmonary reason. Can anyone give me advice?? I am very afraid. Sometimes my breathing on my own walking up stairs is bad. How would I do getting an EGD? Even having an alcoholic drink scares me because it suppresses my breathing. How would I do during the surgery if no one understands what is going on because the rheumatologist doesn't give me a diagnosis? This has started back in 2003/. I have no hardness of my skin except my stomach and upper back, shoulders. Not that it's hard, just that the skin is not able to pinch like it used to be. AND MY primary care physician keeps telling me is fibromyalgia.

#2 Shelley Ensz

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Posted 12 June 2008 - 03:15 PM

Hi Sandy,

Welcome to Sclero Forums. I'm sorry to hear what you are going through.

Please keep in mind I have no medical training and I may be wrong, I often am! As I understand it, even people with severe pulmonary involvement are generally able to go under anesthesia without problems. My husband is on the lung transplant list and had major surgery just fine. He's on 5 liters of oxygen but can take a drink (if he wants one) without any fear of it suppressing his breathing.

So it makes me wonder whether or not you have asked for screening for anxiety disorder yet as that is very common in connective tissue disease, especially scleroderma, and it can cause more severe breathing problems than actual lung disease (physiologically, by the production of excess adrenaline which causes hyperventilation.)

I hyperventilated once, right after a cortisone shot in my neck, and man, I thought I was about to die. Whereas I have some lung fibrosis now and get shortness of breath (which requires slowing down or resting) but not that horrible about-to-kick-the-bucket sort of feeling as with the hyperventilation.

Purple rashes that come and go do not sound very scleroderma-like, so there could be something else going on. A good idea would be to see a board-certified dermatologist immediately the next time one occurs, and have it examined and (hopefully and if it is appropriate) biopsied. Biopsies can often help speed up a diagnosis a bit.

Fibromyalgia is an awful lot to deal with, just in itself. It causes so many varied symptoms!
Warm Hugs,

Shelley Ensz
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International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 barefut

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Posted 12 June 2008 - 03:18 PM

Hi Sandy,

Welcome! Glad you have found us as ISN is full of the most up to date information and the most caring supportive people you will ever meet.

I am sorry you are having to deal with so many symptoms and without a definite diagnosis. That must be frustrating. I am not a medical professional but it does sound like you do have some sclero symptoms. That is how I describe my thick skin - you can't pinch it. Mine is just my hands though.

Have you yet seen a scleroderma specialist?

Shelley,

Thanks for the info on anxiety disorder. I have often wondered why my SOB flares most often when I am put into a stressful situation - interesting! See Sandi - you learn something new everyday here. ;)

#4 truman

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Posted 12 June 2008 - 03:58 PM

Sandy:

It certainly sounds as if you have Sclero symptoms. The purple spots could be an indication of a blood disorder, maybe a clotting deficiency. My friend's son had that. Very controllable with proper meds.

Shelly could be correct in the anxiety department. I get that way myself. Sometimes things build so strong, my anxiety always takes of in the middle of night.

Bottom line is if you're not satisfied with present answers, you must become your own advocate and move on to other medical personnel for diagnosis. I've gotten some great references from the side bars of this forum; "Find Medical Care" is a good start, and I've also contacted the professionals on this forum and have gotten quick and great information from them.

Keep us posted.
Tru

It is what it is...........

#5 jefa

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Posted 12 June 2008 - 09:58 PM

Hi, Sandy. I have come to learn that a specific diagnosis of scleroderma is not particularly relevant as long as you are receiving the appropriate treatment for your various symptoms. A good gastro doctor will be able to deal with your esophogeal symptoms. The procedure for this examination is not considered surgery and you will most likely be offered a sedative rather than anaesthesia. It is all over in a few minutes and involves inserting a tube containing a tiny camera into your throat. This allows the doctor to view the condition of your esophagus, the inside of your stomach and even the first part of your small intestine. Many anomalies can be quickly identified this way. It isn't especially enjoyable, but it is over quickly. We are not doctors here, so it is best not to speculate about the rash. It could be any number of things, so Shelley's advice to see a board-certified dermatologist is excellent. In the meantime, relax and get to know everyone by reading and posting. Welcome and hugs to you.
Warm wishes,
Jefa

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#6 Shelley Ensz

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Posted 13 June 2008 - 12:21 AM

Hi Jefa and Sandy,

I may be wrong (I often am; and please correct me if I'm really wrong here, Sandy, and remember that I am eminently unqualified for all of this) but I think Sandy was trying to say that she is even concerned about a sedative suppressing her breathing (by saying she is fearful of even a drink of alcohol) but regardless, your explanation of exactly what the test entails is very helpful.

Just for the record, Sandy, the EGD is actually one of my most favorite medical tests because of the delightful meds they use for relaxation (but some people experience severe side effects), which leave me with no memory at all of the procedure. I didn't even realize that until my doctor asked me recently when my last one was, and I said, last July I think, but I had no memory of it; and only very, very hazy recollections of a colonoscopy which was done at the same time. So although I knew I had been scheduled for one and I knew what the results were, I couldn't swear, for a fact, that it had actually occurred.

Anyway, my reasoning is that some fears, misunderstandings about symptoms or procedures, or panic reactions might be standing in the way of getting proper medical care, so those issues might d need to be dealt with first or you may not even get the pulmonary testing or EGD. But it is just a suggestion to try to speed up the slow wheels of medical care, to remove any roadblocks to getting the tests done.

Also, I have a friend who just "assumed" her breathing problems were due to anxiety or panic so it was years before she found out that she has severe asthma, which can of course cause very severe breathing problems and can be deadly if left untreated. But she had to be evaluated for anxiety before they were able to pinpoint the asthma. Oftentimes, doctors do us wrong by assuming it is anxiety, for example, but without actually testing or ruling it out properly, and that can act as a roadblock to care. And, they may also do us wrong by not diagnosing or treating anxiety since it can be more disabling and have a worse impact on lifestyle than a great many illnesses; and make actual symptoms an awful lot worse than they are (as though the nervous system is overreacting to stimuli). Either way, it is often something that needs to be dealt with if it is a roadblock to care.

Also, UCTD means "undifferentiated connective tissue disease", which does *not* mean "undiagnosed". UCTD is a diagnosis in itself and over 50% of people with UCTD do not ever garner a more precise diagnosis than that. It simply means the various symptoms are not politely fitting themselves into just a single category...which is probably more due to the lack of doctors having figured out how to clearly label and define the connective tissue diseases, in general, than to anything else.


Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.