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Nancy K

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About Nancy K

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    Bronze Member

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  • Location
    Ludington, MI
  1. Hi SF! I too saw your posting & would like to welcome you. I'm fairly new to this forum, and everyone here is soooo helpful & supportive. It's the best! They've answered alot of questions for me. I believe I also have CREST and am just begininning to find out about it myself. Good luck to you! Nancy K.
  2. Hi Megan! It's different for everyone, I know. I haven't seen anything from those of us who've been on it long term, so here goes...I've been stuck on prednisone for 22 years. It saved my life back in '85, and did a pretty good job for several years. Unfortunately, every time they tried to ween me off of it, my body went kukoo! I have never been off of the drug, because my body formed a dependence. I got osteoporosis at 25, and have a fracture in my spine. I've had the weight gain, the yeast infections, the mood swings, tissue damage, cardiac arrythmias, inablility to heal, and a host of other problems with it over the years, but, It probably increased my lifespan by 30 - 40 years. So, it's a great drug in moderation. As with the disease & the drugs, it's always a balance. There seems to be such a variety of drugs nowadays, and the stuff does work differently for everyone, and they all have their flaws. So, it's whatever works best for each individual, I suppose. Hope this helps some! Good luck with whichever route you take! Nancy K.
  3. Thanks Sheryl! I will keep that in mind. As far as Florida's climate, the warm is great now, but in two months, we'll be begging to go to Michigan! Thanks everyone for the input. Guess I need to get to work! Hugs, Nancy K
  4. Hi Betty! I too have gastroparesis. Yeah, fiber is a big no-no because it is hard to digest. But, we are told how important it is. I was able to mix the benefiber, I think that's what it's called, in with my morning coffee, in order to get some fiber, but have recently been told not to use that either! Yes, there does seem to be a wealth of information on gastroparesis! Feel free to email me personally, and I would be happy to discuss it with you. I don't claim to be the expert, but I've dealt with it for 15 years! Good luck to you! Nancy K.
  5. Hi again Pauline! I've had the jaw pain since Aug. 06, but it comes and goes. Chewing does make it worse, and I love the gum too, but often have to refrain. Hope you can get some relief! Nancy K.
  6. Thanks Pam & Shelley! Actually, Shelley, that is the route I plan to take, but I've already tried out the internists that are within driving distance for me, which means a 2 to 4 hour drive. I live in central, very rural Florida. I think I am going to check out the clinic in Grand Rapids, MI, as my family has a home in nearby Ludington. I've exhausted the Florida doctors. The internists I've seen here are quick to tell me up front that they aren't familiar with Scleroderma & my multiple autoimmune disorders, and that they won't treat the overall condition. So, I need to find someone that is. I just don't think it's possible here, and frankly, the idea of going doctor shopping gives me a headache! But, I know that's my only option. So again, unless someone has an understanding doctor here in Cenral Florida that they can guide me to, I think I'm looking at a major move back up north! Thanks again for the support and the great ideas! Keep em coming! Nancy
  7. Hi Pauline, The excercises are great! Have same issues with jaw pain. I have been taking a muscle relaxant, Flexiril, for general muscle spasms for years, but recently have found it useful for the facial pain and tightness as well. Hope you get some relief soon! Nancy K
  8. Hi Erin, So sorry for you and what you are going thru right now. I'm pretty sure everyone here can relate, as you've seen in the multitude of postings. Just wanted to add my support to theirs! I'm a social worker, and you can't help but wonder sometimes if it's depression, or just a normal reaction to this troublesome disease. Personally, I think it's pretty normal to cry a bit & have a little pity party once a day, or more on the really bad days! I've had this mess for 33 years and have alot of kick left! Hang in there, and I truly hope things go well with your rheumatologist. Lots & lots of hugs! Nancy K
  9. Hi all! Hadn't been on in awhile cause I've had a fever for a few weeks that's been getting me down! I wanted to thank you all again for the encouragement you gave me before my GI visit last week. Unfortunately, this doctor, like all the others I've seen in Florida, is unwilling to listen to his patient. I told him of the fever and constipation for 7 days, and he prescribed erythromycin to help with moving food along, which he's tried before, and he poo-pooed the fever. He also tested for Celiac Disease, which he'd already done last July, and it was negative. But, he said I was mistaken. I have the records, so I checked them when I got home, to make sure I hadn't lost my mind, and sure enough, he'd already done the test and it was negative, and he'd already tried me on the erythomycin, and it hadn't helped. So, it becomes increasingly clear that I need to find different doctors all around! Is there anyone in Central Florida who has a rheumatologist, GI, Hemotologist combination that actually work together, get to the cause of a medical problem and give you a diagnosis, and listen to you when you present a new or existing problem? Cause I'm beginning to think that all doctors are bad, and I know that's not true. But C'mon already! Do I need to move to get treated seriously? Thanks again for letting me vent! Nancy K :rolleyes:
  10. Thanks again all! I will definitely be armed for my appointment tomorrow! I'll let you know what happens! Hugs, Nancy K
  11. Thanks! I've tried Reglan, Propulsid, Zelnorm & Amitiza, and none have worked. I've tried Flagyl, Keflex & Augmentin & they haven't worked. So, what's next? Nancy K
  12. Hi all! Again, thanks so much for all your input re: Negative ANA testing! I fell well armed for my next venture into the land of rheumatology and I will definitely be finding another that treats the symptoms, not the labs! On that note, I am going to Shand's at UF tomorrow to see my GI doctor, and could use some input from those of you in the know... I've gone thru and read all the threads re: motility problems and diets, but I haven't seen anything about liquid diets. I have been on a liquid diet since August, due to a lack of motility in the GI tract (some esophogeal, mostly stomach & intestines) I continue to suffer from SIBO (small intestinal bacterial overgrowth), which is treated with an antibiotic, but it never really goes away. I'm 5' 7 and weigh 116 lbs- my normal weight is 138- and I've been on steriods for 22 years, so I've never been skinny until this last year. The GI doctor's solution was to have me eat only liquids, which means blending everything, or eating yogurt, fruit cups, soup broth, pudding, baby food, mushy vegetables, and nothing that's hard to digest like brocolli or fiber. I'm finding that I am still full all the time, still have really bad reflux & heartburn (on nexium 2 q day) and I haven't had a bowel movement in 5 days. All & all, I'd say I'm getting worse, but the last time I went to Shands, they didn't change, or suggest anything different, and they are afraid to do anything invasive because of the Scleroderma. So, I am looking for ammunition to take with me tomorrow. I know most all of you suffer with aspects of this, so you are the experts! Anyone been on a liquid diet that works? And what meds are you taking for the motility problems? Reglan & Zelnorm don't work for me- I've tried them! The only thing I take for this now is Amitiza. Anyone on something different that actually works? Oh yeah, and I use suppositories at least every other day for the nausea! Thanks again in advance for all your help! Nancy K in Florida
  13. Man! Thought I was going nuts! I have these issues as well, and I can be sweating while my hands are cold as ice cubes, white & numb! I wonder if it has to do with the whole circulation issue and lack of vasodilation, or if it's due to meds? Sorry to hear others suffer this weirdness, but it sure makes me feel better to know I'm not the only one! Hugs, Nancy K (In Florida, for goodness sake)
  14. Nancy K


    Sorry to hear you're having trouble with the pills. My GI doctors have me crush pills & mix them with applesauce, or pudding, depending on the pill, as, like others have said, you can't crush or cut all pills. Pill Crushers are available at most pharmacys. Also, you can get some meds in liquid form- they taste horrible, but go down alot better! Hope this helps- good luck to you! Nancy K.
  15. Congratulations! My, that was fast! It took me two years of repeated denials, and then a court date with a judge to get mine! I used to help others get Disability when I was a social worker, and it never made sense as to why some got it quickly & others had to wait years! Crazy system! So glad for you! Nancy K
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