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jeannie mcc

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Posts posted by jeannie mcc

  1. Hi All,


    Here I am again, back to affirm there can be a good life with scleroderma. It will be 13 years on October 26th since I was diagnosed. At that time I had mild pulmonary hypertension, mild interstitial lung disease, no skin thickening, and horrific GERD. Um, I had 2 dogs and no grandchildren, and was an active hiker at high altitudes. 


    Things have progressed some. I now have 4 grandkids and 3 dogs! The #3 dog wasn't really intended but once you get on the herding dog rescuer list, things happen... 


    As for the scleroderma, the PH/PAH is now moderately severe and the same can be said for the ILD. GI-wise, my esophagus is 'dead', there's no motility at all. I am starting to have swallowing issues and some bowel issues. However, thanks to some really great doctors and a few new medications, I am still doing pretty much what I want, albeit with supplemental O2 . I no longer hike above 8400' /2600m, because I just can't carry enough O2 to do longer/higher hikes. I’m a lot more careful with my diet and the mechanics of eating. We still travel and I have been doing some flying as P2 with a friend. I guess the biggest impediment to doing everything and anything I want is my age, having hit 72 this year. Dealing with age-appropriateness is such a pain. :-)


    I hope everyone is well and happy,










  2. Hi Janet,


     If you did a topic search on Systemic Scleroderma sine Scleroderma, you may have seen some of my posts (I'm also known as jeannie here). I was diagnosed with this form of scleroderma in 2006. I think what finally got me my diagnosis were the verifiable 'co-morbid' conditions: GI issues verified by a gastroenterologist, interstitial lung disease verified by a pulmonologist, and pulmonary hypertension verified by echo and then a right heart catheterization. I have no skin thickening whatsoever. I only have a positive ANA, never tested positive for SCL-70. I also got extremely lucky in that I live in the same city as National Jewish Hospital, which is the number one lung hospital in the USA and at that time had one of the most sclero-aware rheumatologists working there.


     I think my advice to you would be to get your depression under control first. I also have fibromyalgia and the medication I take for that helps with depression and anxiety as well as pain. You can't fight your own case when you feel hopeless. The next thing I would do is get a consult with a good GI. I’m not a doctor, but I could go on for hours about GERD and oesophageal strictures. It sounds like you might have a stricture and a report of oesophageal anomalies would be useful in getting a rheumatologist to think about 'sine'. I'd do the same with your other symptoms - try and see the relevant specialist. If you can add positive reports from other specialists, it goes a long way. 


    It's a tough battle to get a diagnosis. I was willing to consider I was just a raving hypochondriac and needed psychiatric help by the time I got mine. Good luck, take care of your totally understandable depression, and keep fighting. And by the way, tell that less than helpful rheumatologist that rare does not equal never. 

  3. Hi Beckybee,


    I was diagnosed with Systemic Sclerosis sine Scleroderma in the autumn of 2006. I had already developed ILD and pulmonary hypertension. I'm still going strong but in the years intervening have developed Grandma Syndrome, GI issues including a wicked spare tire and jelly belly, and worst of all, a tendency not to take anything too seriously.


    I was one of the first patients on Letairis, and am still on it, and have been on mycophenolate mofetil for most of the past 12 years. I have had a Nissan fundoplication but now have no peristalsis in my esophagus, so the fundoplication may be revised. My ILD is classed as moderately severe, and if my most recent echo was accurate, my PH is severe. That all sounds awful but I am still doing everything I used to, albeit slower (well, I *am*71!).


    So few people know much about Scleroderma and fewer still have heard of 'our' form. When you ask about what to expect you can get some pretty varied answers. What I can tell you is the quality of your life will be up to you. Attitude and doing all the things to stay healthy (good diet, lots of exercise, good sleep habits, and counseling if needed to develop good coping skills). Be a nag until your muscle/joint pain is adequately addressed.


    Good luck, Becky, I hope your life is as much fun as mine is.


    Jeannie McClelland

  4. Hi Gigi,


    I've agreed to participate in every study my doctors have asked me to and I think I'm up to 6 now. Three of them involve blood draws, most of them involve questionnaires, one that was investigating a possible link between pulmonary hypertension and glaucoma got me a whole morning of extensive eye exams. I think most of them wanted some level of access to my medical records.


    None, so far, have been trials of new medications, but I think I'd agree to that so long as it didn't change the regimen that is working so well for me.


    I figure that anything I can do that'll help others get quicker, better diagnoses and treatment, hey, it's worth it.



  5. Oh my! I'm not sure whether your trauma or Grace's made me wince more!! Deary me~ Brave, brave ladies, the pair of you. Hope everything heals up properly for you both.


    Hugs and a virtual cup of hot chocolate (would that help? You can have marshmallows and/or whipped cream on top...),


  6. Hi Millefleur,


    I'm a "sine" myself with ILD and PH and I can vouch for what Janey said: lots of new treatments available and more coming along all the time. Another good thing is once you have a diagnosis the doctors are much more willing to schedule all the tests necessary to keep an eye on things.


    This forum is truly a wonderful place. We all love and care for each other and each new member is a very welcome addition to our circle of friends. We can ask what seems like the dumbest questions, voice our worst fears, share all the things that go on and somebody will invariably send just the response we need.


    I'm sorry about your mother and that you're facing all this, but glad to have you as a new friend.


    JJ-Knitter (keeping fingers warm stitch by stitch :rolleyes: )

  7. My rheumatologist mentioned today that the latest chest CT showed air in the esophagus and that it shouldn't be there. We both then got distracted and I forgot to ask more about it. So I came home, Googled "air in the esophagus" and guess where it sent me?! Ayup, here. The summary said "This radiological sign, although rare, should suggest Scleroderma and may be particularly useful in patients with "systemic sclerosis sine scleroderma."


    Guess who has systemic sclerosis sine scleroderma... :P



    I love Sclero.org and this forum is just wonderful. So Hurrah for the good folks at ISN and all my fellow sclerodermians. And thanks, too!



  8. We talked about all this before, and I said I'd post after the results were in from the latest DEXA. Because it was a different machine, the doctor wasn't willing to swear to it, but it looks like a year of 3-monthly Boniva infusions has at the least prevented any more loss of density and possibly improved things the tiniest bit.


    I recently was referred to an endocrinologist and she wants me to switch to Reclast, she seemed to think that it was the more effective medication. That'll happen in December, the insurance company being willing~


    I do know I haven't had any more fractures - they did an X-ray to check because of ongoing back pain. (I didn't mention I'd recently spent several weeks heaving large and heavy pots of trees and shrubs around! :lol: )



  9. Hi Razz and all,


    Thanks for the input! I'm at the 15 months stage and it's not causing me any problems. I've achieved stability (not necessarily mental stability, mind you) and not had any side effects. It's kind of become my security blanket. I should have thought about the transplant folks - one of my closest friends is 10+ years on a successful kidney transplant and has taken CellCept almost the entire time.


    Hugs to you all!



  10. How long are most people kept on CellCept? If there are no serious side effects, can a person be on it 'forever'? How about if things seem to be stable? Can it be discontinued without the scleroderma flaring up again?

    I know that with things like cyclophosphamide there's usually a maximum recommended treatment duration, but I don't think I've ever seen any thing like that for CellCept or Imuran.

    Happy Autumn to all us Northern Hemisphere folks and I guess it's hooray for Spring for the folks below the equator!


  11. Hi all!


    Thanks to so many for responding to this. It's a question that's interested me for some time. My sense is that all of us think we were showing symptoms for a long time before getting a formal diagnosis, that it took a "constellation" of symptoms to get the correct diagnosis, and it's about 50/50 whether or not a rheumatologist made the diagnosis.


    I think I was more relieved than anything else when someone finally put a name to what was going on. I could find out more about a specific disease, find out what sort of tests and treatments would be involved, and take an intelligent (well, at least I hope so) part in my care and the decision making process. Retaining some control over my life is very important to me.


    If I could wish for two things for all of the people out there who are still struggling to get a diagnosis, it is that they get it quickly and that they are treated with dignity and respect.


    Best wishes and warm hugs to all of us!



  12. Hi All,


    After reading all the posts about the difficulty in getting diagnosed with sclero, I wonder how long everybody thinks they had sclero before the diagnosis (diagnosis), and how do you tell anyhow?


    Me? I'm guessing less than 5 years and I'm basing that on a series of high ANA's, livedo, and the appearance of the first teleangectasia.


    I'd also be curious to know how many rheumatologists (*) you saw before the diagnosis and whether or not it was actually a rheumatologist who had the Eureka! moment. In my case it was a pulmonologist.


    (*) It was only one, but I sure made a lot of boat payments for my general practitioner's practice :lol:


    Warm hugs,



  13. Hi love,

    So the rheumatologist has never heard of systemic scleroderma sine scleroderma?

    My skin looks fine, always has, and the only elevated blood work ever was high ANA with nucleolar pattern. The first rheumatologist I saw said the same thing yours did. Less than 2 years later, after a full work up elsewhere they said I had "SSc sine Sc", ILD, PH, significant GI problems, and fibromyalgia. Oh yeah, also teleangectasias, livedo on the legs, and nailfold capillary dropout.

    You might want to ask about SSc sine scleroderma when your great neurologist refers you to a more open-minded rheumatologist who is particularly interested in sclero. wink.gif

    Lots of luck, best wishes, and let us all know how you get on!


  14. Hi Razz,


    I do Pilates, but I pick and chose so I don't over do it. It concentrates on the core muscles and flexibility more than developing strength, but you can do most of the exercises with those big rubber ribbon things. It's worked extremely well for me over the years. Your public library might be able to get the DVD's for you.


    The heated pool is good, but the air when I came out was too cold and set off dear old M'sieu Raynaud and they wouldn't let me stay in it forever and just deliver my meals. :D I couldn't figure out how to manage the O2 either.


    I loved yoga, but I found that you've really gotta be a bit careful with any of the exercises that put you in a head down position if you have GERD. <_< With the bad back and hips, it was too much.


    For the hands I still use yoga. There's a book out that shows all the positions, but I don't know if I can name it in the open forum. Between it, thera-putty (for resistance), and the knitting, I'm able to keep the hands limber and the pain pretty much under control.



  15. Oh Tru, what a bummer~ Good luck with the money tree. I understand fertilizer from a bull's excrement helps them to grow real fast. ;)


    I had this happen to me with payroll taxes. All of a sudden they decided they'd miscoded things for months and took it all out of my next check. I threw a major wobbler and said that since they'd made the error over X-months, they could recover the money over the same period of time and if they didn't give me a check right away for the proper month's pay less 1/x of the overpayment, I'd report them to every government agency I could think of and do my best to blacken their name. I could guarantee a complete audit of their books at the very least, but I guess the sight of a menopausal female in full blown rage was what really did the trick. :lol: At least my landlord got the rent that month~



  16. My doctors, bless 'em, have been very good about prescribing pain relievers and potent anti-inflammatories when I need them. They say that things get better faster if you aren't in constant pain and "life is too short to be miserable." I think being willing to do the PT contributes to their willingness to work with you.


    I hope your MRI pinpoints the problem for you and you get some real relief soon.


    Warm hugs,



  17. G'day! (I've just read some Aussie biographies, so forgive me, OK?)


    I've heard of both hospitals and nursing homes taking used books. Another place that likes them is community senior centers. It's kind of neat to see what turns up on those shelves!


    I haven't read JD Robb yet, but she's on my list too! I've got some mixed feelings about Jeffrey Deaver, too. I've read most of Patricia Cornwell's Kay Scarpetta series, but she's like Deaver - a little too dark for me. (So why do I keep reading them?!)


    Susan Wittig Albert would probably be a hit with anyone who likes Diana Davidson.


    I love my local library too, even more so since they now have a little coffee shop. :rolleyes:


    A friend lives in Brooklyn OH and their local library is stupendous. They have a permanent exhibition of quilts, seem to get every new book in audio and large print form as well as the regular format. And they are extremely helpful in getting stuff in on inter-library loan. And it is never, ever cold in there. Perfection...



  18. Hey Smac,


    Philip Margolin? That's a new one I'll have to look out for.


    Every time one of the book stores sends me one of those "people who enjoyed [so and so], also bought [this book]" emails, I stick the info on my check-it out reading list.


    My short-term memory is so bad that I have a folder full of author sheets, with lists of their books that I tick off when I've read them, that I lug along to the library, used book store, or the regular book store when they send me good 30% off coupons! :lol:


    A couple of friends and I lend each other books. We all have 2 el-cheapo canvas bags - each friend has an in-coming and out-going bag. The out-going bag goes to whichever friend you see first. When your book gets back to you, you pull it from the bag. Since none of us are contendors in the memory stakes, some times a book makes the rounds several times and by then nobody remembers whose it was! :lol:


    A couple of our local grocery stores have a table full of books - drop one off and take one. Another one has a similar table and the 25-cents per book fee they charge goes to a good local charity for battered women and children. All on the honor system. Nice ideas, huh?


    Keep on reading!



  19. Hi KarenKaye,


    I had pretty bad tendonitis in the left shoulder and "some" in the right one. The cortisone injection didn't help, but some intensive physio did. They started with moist heat and massage and used some kind of machine on the shoulder, then strapped it with Kinesio tape which I had to leave on for 3 days. After a couple of weeks of that 2 x weekly, they introduced exercise. That went from something pretty mild to a whole set of exercises building up strength and freeing up the shoulder. I've got pretty good range of motion now and not much pain at all, as long as I keep doing the exercises.


    Hope you get some relief soon!



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