Mentally Exhausted Newbie
Posted 20 July 2007 - 02:54 PM
i haven't posted here before now, and this seemed like the right time. I have uctd with a positive ana (nucleolar), raynaud's, leukopenia, thrombocytopenia, sjogren's (eyes). history of pancreatitis and hospitalized with dehydration when all of this started 1 1/2 years ago. I had back surgery in october 2002 and the surgery was very hard on me. I'm back to work part time and over all feeling pretty good most days. my stamina has never come back 100%. I now have knee, wrist, hand, ankle pain and stiffness. I look down and expect to see swollen hands, but they're not. they FEEL swollen and tight. that's it.
i, too, want a definite diagnosis. I want to know what I'm dealing with so that I can fight it properly. it's very frustrating.
i've had some changes since my dr's appt 4 months ago. I have to take colace for constipation now. I've very rarely ever had a problem with that. I have a huge amount of abdominal bloating, especially after I eat. some foods have a hard time going down when I swallow. my fingertips have become sensitive, even when it's not cold. I noticed this first when pressing my pin into a keypad at a checkout.
i also have found the faintest light pink "freckle" on my right thumb. it blanches when I press it. this is the only one.
i'm a nurse, so I'm afraid that I know a bit too much. sometimes I wish I were a bit more in the dark about things, then I wouldn't feel this sense of dread that I feel. I'll bet most of you can completely understand.
i go back to my rheumatologist monday and expect to see the same labs as before. then it's going to be watch and wait...again. I'm becoming mentally exhausted from the whole game of it.
thanks so much for letting me vent. I've been viewing these posts for a while now and I'm sure I'll be amongst friends here.
sharon in washington
Posted 20 July 2007 - 03:02 PM
Welcome to the Sclero Forums. I'm so glad that you found us, but sure sorry to hear you have health issues.
You have come to the right place! You will find a lot of information, support and friendship here.
I want to give you a link to start with, it's on emotional adjustment, there is so much to deal with at first and I know at times it can be overwhelming and depressing.
We have a couple of things in common, I'm a nurse and I live in WA too.
I look forward to knowing you better.
Posted 20 July 2007 - 10:40 PM
Thanks for posting! This seems to be a great place for support. I am new here too and waiting for a diagnosis.
I'm not a nurse, but my mom suffered with sclero so I know what it can do. But on the other hand, knowledge is power and some complications might be prevented with proper treatment.
What struck me about your post was that you mentioned constipation and abdominal bloating. Please tell your dr what is going on. This happened to my mom, but it got worse. Her peristalsis (sp?) basically slowed down to a halt and her intestines could not push food through. The intestine ended up folding over itself causing a blockage and all the enemas in the world didn't help. She had to have her colon removed. She was unable to deal with that physically and emotionally. Imagine trying to empty a colostomy bag when your hands don't work. After a year, she was "reconnected" which helped her emotionally, but she never got any strength back. She was about 88 pounds.
I think I read somewhere that there are meds that boost peristalsis to avoid this problem. Ask your dr. Also, eating small meals and food that digests easily will prob help too. I have looked for special diets for sclero, but haven't really found any.
Good luck and let us know how your appt on Monday goes.
Posted 21 July 2007 - 02:28 AM
Welcome but sorry you are here under these circumstances. Has your rheumatologist said it could be Scleroderma?
Do you know if you had a high or low titer ANA? I ask because I just read that 5% of people have ANA without a disease and it's a low titer. The doctors. base a diagnosis on the combination of ANA (especially high titer) AND the patient's symptoms. This is only something I read yesterday, it could be false information....didn't hear it from my Dr.
I had the stomach bloating as a symptom when things got ugly and I finally went to ER. Actually, it was the combination of the major stomach bloating and the shortness of breath that sent me to the hospital. I am fairly thin (although I am totally flabby...ha ha) but I had this protruding stomach that I could not suck in and I knew something wasn't right. Is this how yours is?
In this case, I think it is a blessing you are a nurse and know more thant the average person so that you aren't disregarding your symptoms and will get the right care.
Keep posting and let us know.
Posted 21 July 2007 - 03:47 AM
Posted 21 July 2007 - 10:50 AM
Piper, I keep meaning to comment about your 'grumbling' disease, but it has taken me ages to find the book that referenced it. I know several have commented that they would be offended by such a comment from their doctor. My first rheumatologist used the expression 'grumbling along' at my fourth visit and I was also vaguely annoyed by it. Later, however, I found the word in a medical text book on rheumatology circa 1983, referring to polymyalgia: "Some cases remit within a year or two. Others grumble on for six or more years, or relapse after a period of remission." The word must be fairly commonly used in these circles then.
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International Scleroderma Network (ISN)
Posted 21 July 2007 - 12:05 PM
Welcome to the forum! I am sorry you have so much going on with you. Be persistent so you can find out what type of tests you should have done. I know that I had a gastric emptying study done and mine was abnormal. I was treated with Zelnorm, but they took that off the market. Reglan is also used. Take care and hang in there!
Posted 21 July 2007 - 12:28 PM
I believe what her doctor is telling her with the "grumbling" disease is that "something is brewing" he just doesn't know what to call it yet. When I first had symptoms prior to my lab tests coming back positive, my doctor said "you have this smoldering autoimmune thing going on I think". Just a matter of speech.
Pipes, correct me if I'm wrong!
Posted 21 July 2007 - 02:42 PM
Wow Jefa, Thank you so much for researching and actually finding something in reference to grumbling. I've searched and couldn't find a darned thing on it. I know that I have symptoms of several diseases but not enough to pin down on any one. I wonder what the difference is between "grumbling and UCTD"? I asked if I could have UCTD and was told, no mine was grumbling??? Maybe because my ANA has never been higher than 1:160. It can't be too bad or I would have a diagnosis by now, wouldn't you think?
If anyone asks why I don't feel well I just tell them I have arthritis, which I do.
Posted 22 July 2007 - 06:06 PM
Just wanted to say welcome and sorry you are feeling mentally exhausted. Been there, doing that...
Easier said than done, but try not to worry too much.
What tests have you had done? Has your rheumatologist looked at your nailfold capillaries?
My rheumatologist had me pretty much diagnosed by the symptoms I told her about (Raynaud's, swollen, puffy hands, body aches, GERD), my obvious (to her) small mouth and my nailfold capillaries. Then my scl70 came back positive and CT showed "ground glass" in my lungs.
BUT for 6 years I had a "probable mild lupus" diagnosis complicated by my doctor's aparent assumption of hypochondria - or so I was treated.
Off to new doctor and a sclero diagnosis within 6 months.
So, I guess sclero was just lurking around inside of me and took 6 years to make itself obvious.....or else I could have been diagnosed many years sooner.
I am very lucky that sclero has not progressed farther than it has with me. Very lucky.
I heard an inspirational story from another woman with sclero in my town. She said she knows another woman with diffuse systemic sclero who's grandmother had the same and lived into her 90's.
I'll leave you with that positive note.
Posted 23 July 2007 - 08:45 AM
Welcome to Sclero Forums! You certainly have found the right place, based upon your symptoms.
We also have another page of the main site you may find helpful, which is Difficult Diagnosis. You might even want to add your story there!
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Posted 23 July 2007 - 09:13 PM
Diagnosis is difficult. I'm sorry. I went through 4 doctors before I got mine. Hugs!
Have you seen a gastro doctor for your stomach issues? I had gastro issues and had to eat smaller meals more often. I ate a lot of strawberry & mango apple sauce for a few months, then it slowly disappeared. Sclero is so strange. I hope yours subside.
I also have no stamina/endurance. I have about 4-6 hours before I need to rest. Gentle exercise does help. Please take care of yourself. Have you looked into FMLA?
Be careful with your fingers. My fingers were sensitive for a long time. Then, I got 3 painful ulcers. I hope you never get one.
yes, you are among friends -
You can deprive the body but the soul needs chocolate
my HMO makes me wear a helmet...
Posted 24 July 2007 - 11:58 AM
thank you all so very much for your words of encouragement. I generally try to stuff things within if they're on my mind. letting go of some of it really eases the stress of it all.
i saw my rheumatologist yesterday for my four month check-up. my platelets, white count, and rbc's are still low, which is normal now for me. she is now referring to my uctd as mctd. we talked about antibodies. these tests were all performed in march of last year. all of the lupus ones were negative, including rnp. rf was negative, as well. the only positive was the basic ana (1:160, which is on the low side of high). when this all started in october 2005 my ana was negative. she wants to repeat this in november when she sees me next.
i do have a significant amount of hypo and hyper-pigmentation on my shins, face, and chest. it looks like white scars, similar to vitiligo.
it looks like I'm sort of on a "slow burn" with this. we discussed that it may take some time for all of this to evolve. the hard part for me, still, is not knowing what it's going to evolve into.
whew!! thanks again to you all. it's so nice to be able to share this with a group who understands the magnitude of what might be considered trivial to someone else.
sharon in washington
Posted 02 August 2007 - 01:14 PM
Welcome to this awesome forum, even though it troubles me that you have the (confirmed?) diagnoses. I am familiar with most of them as a result of folks on here and myself.
When you named Thrombocytopenia, it really caught my eye. Someone near and dear to my hubby and me... his ex-wife... has Thrombotic Thrombocytopenia Purpura, so my heart goes out for you both. As you mentioned... it sometimes doesn't make it easy to know as much as we do. Yet, knowledge is power and that can be a definite advantage in many cases. Either way, I am so glad you found this forum... folks here are a wealthofinformation, not only with information but also... support.
Posted 02 August 2007 - 05:09 PM
I just wanted to give you a warm welcome!!!!