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I was diagnised with crest ,limited scleroderma, mctd, sine scleroderma which makes sence to me. Told I do not have scleroderma and told you have scleroderma and have to accept it.another dr told me it doesn;t matter if you have scleroderma or not because there is nothing they could do about it anyway. True statement but I wonder if this dr would like hearing “It doesn’t matter if you have cancer or not because with this kind of cancer there is nothing that can be done. Does a patient have the right to know what they have? Maybe they do not know how to diagnose me. I was even told if you truly have scleroderma you would be dead at your age 63. Not told this in a nice way either. And not greatful to hear this because I really feel I am conected in some way and my sister died of scleroderma and cancer. Some dr’s have also treated me like I am crazy and I am not. I do not want to be sick. What I go through is not in my head. I handle things very well.
I do believe I am connected but do not know how. I know I do not feel right in many ways and have good days and bad days
There are 7 family members with raynaud in my family and my sister had scleroderma and no blood markers but you could see it on her skin, and lung involv. and severe raynaud, my grandfather had raynaud even though they didn’t know it was that at the time, my mother had ramatic fever and had something that made her shake as a child, raynaud as an adult, arth.
I have had severe raynaud but not as bad as my sister who had fingers/toes removed. I have had ulcerations on my hands most of 30 years and have also been in the burn center. I have some coming in to clean now so that has helped my hands. Again told I have scleroderma, I have something going on with my lungs, one dr said it is something to do with scleroderma and another dr said ashma. I have reflux and now barretts, I told my dr i believe i have thyroid and they tested me and came out neg. about 5-6 years later it came out positive for hosh. low thyroid. My airways has closed completely 5 times while chewing or swallowing they said disfasior (not spelt right), but also told might be larangospasm. I can’t breath at all when this happens.
All my blood tests for scleroderma come out NEG though. And that is the problem i have with getting diagnosed the skin on the palm of my hands are very tight can’t pull skin out and my hands are tight and curved. The back of my hands are soft and you can pinch it but it hurts doing this. The skin on my stomach is thick and skin on the bottom of my feet are very tight/thin like the palms of my hands. and skin on my legs are tight. They did minor surgery on my leg and did 3 layers of stitches and I got home and it was bleeding. My body temp. is lower that normal. I have vascular problems with my legs and had my veins stripped due to value not working 40 years ago. I am in the 60,s and live in NY area. Now my medical records say no medical link to scleroderma I believe due to neg blood tests for all scleroderma tests. I have always been very tired even way before diagnosed with low thyroid. My fingers used to swell up often and not it doesn/t much and my skin on my fingers used to be tighter than it is now. My face doesn’t really look like scleroderma.I am now getting my medical records and some on it is wrong. I do not see good and can’t check what i am typing here. It hurts to read now. I am on lots of pain meds and also have arth. I have adema on my leg for about 35 years. Have bradycardia my pulse goes to 53 and after dental was 47, normal is 60-100. I am so cold in the winter and wear so much clothes even in the house. I have told my dr that i am colder than normal and it is not the raynaud said putting my clothes in the microwave to just get dressed, and told him I am always tired and not functioning always in bed get up to do something and can;t end up back in bed . Six months passed and the dr took a thyroid test and was told if something is wrong they would call me. They didn’t and I pulled the records and found that was the problem. I was colder than normal just as i said also no energy and ended up with a blood clot. Left a message for my dr in the hosp for him to call me with a copy of my blood test telling him to change me synthroid blood test not normal. he should of tested me 6 months eariler he would of been able to correct it and maybe i would feel better sooner. What do you do when there is bits of pieces and it doesn;t all fit together? Anyone else have a similar problem? Are the blood tests for all of this so great or not?
Thanks for your time to read this. By the way my sister was the strongest person I know. She was always in so much pain and when she could she looked for ways to enjoy her like to the fullest. I am trying to follow her and do the same.This post has been moved from Personal History and Progress section (which is for author
I never heard of scleroderma until I joined RBF, however I am sure that you can ask some of the members or volunteers here at RBF for a good doctor in your area, that would be better to go to than the ones you have previuosly gone to see. An AP doctor would be someone that could help you out and there are scleroderma members here that have improved so much with AP.
I hope you get well.
Take care,
SheriHi Tara;
Right away your post made me think that you have Lyme disease.It is so immune suppressing that you can’t mount an immune reaction so your tests show nothing.Sorry for the bad explanation as I have a rough time explaining things in English.Like you ,all my lab test were normal and even my SED rate was never higher than 2….go figure.Use the search at the top of the page for posts involving Lyme,there are many and you will find the info you need to get started.You will notice that most SDers here do have Lyme also
LynneHi Tara,
I’m so happy you have found this forum. Welcome to RBF!
There are so many wonderful people here and you will always find support, help in understanding how things work and how the protocol can be tweaked to get better results. I don’t have SD, but many people posting here do and all have been helped with AP (Antibiotic Protocol). Some improve fast, some take much longer, but the progression of the disease is always arrested and improvement keeps happening. Tara, you will get better! It happens all the time once you start the protocol that works. I hope you will get many replies from people with SD and in the meantime please search the forum for any topic of interest. You will have to go to General Discussion (searching above this thread will only show results from within this thread) and above the topics, right by the window NEWTOPIC in red, there is a search window in which you can type anything you would like to find posts about.
May your road back to health start and progress from now on!
Warm wishes, KrysTaras,
I don’t think it matters what you call your disease. Those who have been on this board long enough have seen people come in as MCTD then become Scleroderma with RA or vice versa. I’m sorry the doctors you have gone to have been so unsupportive and callous. I have been on this board for almost six years now and have seen many people with scleroderma turn their conditions around. Get an AP doctor and start treating! I think you’ve suffered enough.
Hi Taras,
Welcome and so glad you found us 😎 . This is a wonderful group of supportive people who all share similar stories to yours.
Your story is an example of how broken our medical system is in this country (and other countries too). It reminds me of an article posted by another member, Trudi, that said that 25 milliion Americans suffer from rare illnesses that go undiagnosed or incorrectly diagnosed for years. In the end, the diagnosis really doesn’t matter, it’s that you find the cause, and treat accordingly. How disheartening, and how wrong to hear that there isn’t anything that can be done.
There are many on this board that have a myriad of diagnosis. My mother-in-law was recently diagnosed with Scleroderma, but she had markers for lupus, MTCD, Raynauds and RA. The diagnosis is just a name for a list of symptoms. There are many here on this board, who presented with symptoms similar to yours, who have been treated and are in remission.
Now, it’s time to find an AP doctor and start on your road to recovery. You may also want to consider lyme testing, as so many with Scleroderma have tested positive. It’s puzzling that so many in your family have suffered with variations of autoimmune disease and scleroderma. I don’t know what the connection might be, but that is something to look in to, and may give you insight to the infectious cause of your SD.
Let us know if you want us to send you a list of AP doctors in your area.
nancyI have scleroderma on my skin. It’s really bad on my lower legs and painful. My feet, ankles and lower legs feel like my skin has 3rd degree burns. I am on Minocycline therapy (100 mg. twice a day). The pain has become worse since beginning therapy, but I expected this from reading the book, Scleroderma, The Proven Therapy That Can Save Your Life. My question is, has anyone had similar experience and is there anything I can take (prescription or otherwise) that will help me remain calm and not so distressed from constant pain?
lepartain – you may like to start a new topic. You may get more responses from this versus adding to a thread started in June last year. Hope you get some answers
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)I am always in and out of remission but have found great success and support within the confines of the roadback and its people. your in decent hands here, and most everyone has a wealth of advice to share around here 🙂 welcome!
@lepartain wrote:
I have scleroderma on my skin. It’s really bad on my lower legs and painful. My feet, ankles and lower legs feel like my skin has 3rd degree burns. I am on Minocycline therapy (100 mg. twice a day). The pain has become worse since beginning therapy, but I expected this from reading the book, Scleroderma, The Proven Therapy That Can Save Your Life. My question is, has anyone had similar experience and is there anything I can take (prescription or otherwise) that will help me remain calm and not so distressed from constant pain?
Lepartain Just an idea, as I am not sure if you are seeing AP doctor who put you on this or not. I had to start very slow 50 mg once daily MWF and slowly work my way up. It took me 3 1/2 years to work up to the dose I am at now. When I have a raynauds attack, my feet and shins burn and back of legs and are sensitive to touch. I can hardly walk if the attack is really severe. I take both slow release and fast acting adalat only when i absolutely have to because it is hard on the liver. But when nothing else is working it is a god send.
A supplement that is good for anxiety and stress is Mellisa also called Lemon balm in capsule form, I use this often when I am stressed or cannot sleep. Works really well.
Do you take an anti-inflammatory? It may help with some of your swelling and pain. But can also be hard on your stomach, best to take with food.
Just remembering when my skin and underlying tissue and muscle first started turning hard, it kind of burned too and i had a deep burning itch. My arms are scarred up from scratching them soo much. I found the best way to soften the skin is to have warm baths in Magnesium Chloride flakes (not to be mistaken with Epsom salts), also helps with any aches and pains and could also help you detox a little. Warmer heals and hotter detoxes.
I also had skin pain in the beginning when it was hardening ( I had rapid onset) I took straight codene for this, worked like a charm.
Hope this info is of some use to you.CANADIAN LIVING IN CANADA
Diagnosis/ Diffuse Scleroderma since 05/2006
Current Meds: Methotrexate, Minocin, Zantac, Rabeprozale, Zopiclone
Current Supp: Nattokinase, Serrapeptase, COQ10, Milk Thistle, Folate,, B12, D3, Melissa, UP4 probiotics, N-A-C
medical MJ
Current Extras: FIRI have had Scleroderma for a few years, but just recently (3 months ago) started the Minocycline therapy. For some reason, my appetite has increased off the scale – like when I was pregnant. I am 67 – not pregnant – but starving all the time. Here is a list of my medications:
Diovan – 320 mg per day
Minocycline – 100 mg twice daily
Prevacid
warfarin SOD 5 mg
Multaq 400 twice daily
Lunesta 10 mg once nightly
Lortab 10 mg – twice dailyI’m so hungry. Food tastes too good. Even when I eat till my stomach hurts, I’m still starving. Is this a side effect of Scleroderma or my meds? I’m desperate!
@lepartain wrote:
I have had Scleroderma for a few years, but just recently (3 months ago) started the Minocycline therapy. For some reason, my appetite has increased off the scale – like when I was pregnant. I am 67 – not pregnant – but starving all the time. Here is a list of my medications:
Diovan – 320 mg per day
Minocycline – 100 mg twice daily
Prevacid
warfarin SOD 5 mg
Multaq 400 twice daily
Lunesta 10 mg once nightly
Lortab 10 mg – twice dailyI’m so hungry. Food tastes too good. Even when I eat till my stomach hurts, I’m still starving. Is this a side effect of Scleroderma or my meds? I’m desperate!
Lepartain, just wondering as you didn’t list this….are you taking a good quality probiotic and, if so, are you taking a good amount each day, spaced well away from your abx by at least 2 hours either side?
I have heard of this side-effect of minocycline before in some rare instances being discussed on other sites and if you run some searches on google with key words, like “increased appetite and minocycline,” you should get some hits.
I think it might be hard to say which of the drugs you are taking or a particular combination that might be causing the increased appetite, though. Diovan, an angiotensin II receptor antagonist, can have some effects on improving impaired glucose tolerance in Diabetes Type II, so in a person without impaired glucose tolerance, could it be a cause of hypoglycemia? Minocycline has some effect on MMP inhibition and is actually being used in diabetics to help prevent the detrimental effects of diabetic stroke risks. Could it be that the two drugs are interacting, perhaps causing hyploglycemia and increasing appetite? I don’t know, but it might be something to discuss with your prescribing doctor. Here is a link to the drug side-effects of Diovan and if you look under the Gastrointestinal section, you’ll find that increased appetite is listed.
http://www.drugs.com/sfx/amlodipine-hydrochlorothiazide-and-valsartan-side-effects.html
This is only a fellow patient suggestion, but I also wonder if perhaps digestive enzymes might improve this situation. In SD, especially if there is any gut involvement, proper assimilation of food is slowed down (slowed further by BP meds) and nutrients are less able to be absorbed and toxin reabsorption a problem. Digestive enzymes may actually help this situation, but this would be more the terrain of an ND rather than a mainstream doc.
It’s not unusual to use Warfarin, if sticky blood is an issue, but just thought to ask if you are receiving regular bloodwork to check your prothombin times? Tetracyclines also cause blood thinning, so no doubt you will need to be watchful of blood becoming too thin. Some folks with SD will use systemic enzymes to reduce sticky blood, but these shouldn’t be used along with warfarin. Another supp to avoid would be MSM, for instance.
You may already be aware of this, but while on the Multaq, you’ll need to be very cautious about not using any abx in the macrolide class or anti-fungals that may also block the P450 cytochrome (liver detox pathway) as the interaction could cause liver injury (good reason to ensure adequate probiotic intake to prevent fungal overgrowth). This drug can also cause some dyspepsia, which can be confused by the body’s sensory pathways as the hunger sensation. You’re on prevacid, but the combination of drugs may be causing some gastrointestinal symptoms that feel like hunger.
http://www.nemechekconsultativemedicine.com/?page_id=1289
Just trying to think of some ideas for you to consider, Lepartain. My best guess is that your stomach acid has been altered by the drug combination and you may not be breaking down and absorbing nutrients as well as you might otherwise, not just from the SD, but due to the actions of the drug combination. Perhaps a visit to a good integrative physician could help to unravel some of this mystery for you?
IN 1998 my adult daughter was finally diagnosed with scleroderma. She had had thick patches on her stomach and on her right upper arm for a few years and dermatologists could not diagnose it. The doctor who diagnosed it was as callous as the dr. you describe. I couldn’t accept that “there ‘s nothing you can do” and that’s how I came across The Road Back.
As my daughter had had this for several years and it didn’t get better or worse, she did not take meds. However, about 5 years later she developed sudden, very severe RA. She was fortunate to be prescribed Minocin early on and the RA was in remission in less than 10 months – pretty amazing. She continued to take the Minocin and when she had been taking it for about a year, she noticed that the scleroderma patches were shrinking. She has never been on Doxy and coninues to take a maintenance dose of Minocin. She does still have vestiges of the scleroderma.This is all just to say that if you can get good AP treatment for your scleroderma, there is every reason to expect that you will conquer this. I’m glad you found this site. You will find folks here very supportive and helpful.
Good Luck!
marg
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