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Everything posted by Wohali

  1. I'll just tell you what my cardiologist told me. He is a cardiologist but he said he was very interested in rheumatology and immunology in medical school and almost became a rheumatologist. He made the statement once to me that, "No wonder you hurt all over, that CREST syndrome attacks the collagen in between all the joints. I bet your fingers and hands really hurt a lot." So there a doctor said we hurt. And I can tell you I hurt all over, mostly joints and back, but also stabbing pains in bottoms of feet and throbbing pain in muscles in forearms and legs.
  2. I have yet to meet a rheumatologist with an ounce of concern or compassion and not one has helped me. I'd advise you find a new one. Meanwhile I also suggest you go to a cardiologist and get a full heart checkup complete with EKG, heart ultrasound and stress test. I had to take matters into my own hands because I had doctors telling me they heard a murmur yet would not check it out. So I finally found a cardiologist who would test me and yep he found a murmur and mild pulmonary hypertension. I'm now on a calcium channel blocker to help the palpitations and murmur and incidentally the same medication is used to treat Raynaud's so it makes me feel much better taking it.
  3. When traveling I always remember to pack all my meds, including extra pain meds, plus stuff for upset stomach from eating foods I don't normally eat. Plus always take a jacket on the plane because many times they keep it as cold as a meat locker once its in the air. Make sure to take a hat and gloves as you never know how the weather will turn out plus an extra sweater, warm shoes and socks. I also try to take my own snacks and tea bags as you never know what kind of weird food they are going to have at the airports and many times its not stuff that's easy on the stomach. I'm preparing to travel myself soon so I gotta remember to pack everything I'll need.
  4. Someone mentioned looking for genetic causes of Sclero. Are you all not aware many articles state there is a high incidence of Crest and Sclero in people of Choctaw Indian descent and also Thai? I happen to know I have Choctaw heritage though my family are considered as members of Cherokee tribe. Ok we are mainly Cherokee, though one great greatgrandmother I found was member of Choctaw tribe. From what I read the Sclero/Crest gene was traced back to 5 original members of the Choctaw tribe. So this is the real downside of being Native American :unsure: at least in my opinion. As far as silica goes. I've always worried myself because the last several years I used that pearl litter for the cat which is pure silica gel. But I'm pretty sure I was diagnosed with Crest before switching her to that litter, though before that was clumping litter which from what I'm reading from people here STILL contains silica. That said all the silica is out of my house now as my cat died on March 12th and I'm still just as sick. Actually worse pain than ever. Though no one said removing silica from the house would suddenly cure Sclero. :P But what about the Benzine exposure thing? I've read that was suspected cause of Crest too. I know I have had Benzene exposure in a former workplace over a decade ago. Not to mention Benzene is in all sorts of things such as those numbing throat sprays I used to practically OD on and its used to "extract" grapefruit extract for so called natural supplements.
  5. Penny, Are you sure she really understands that Murial isn't the correct word? Someone who misheard something may swear they are repeating the word correctly. Maybe she doesn't know its really mural. For the longest time I thought it was mouse meat pie not mince meat pie. And now that I need to wear hearing aids I won't even say all the things I mishear when I have my HA's removed and am watching tv. I actually am shocked at what I apparently mishear or else they are getting really crude with what is said on tv. :huh: To all, Just out of curiousity has anyone else had a neuropsychological evaluation to see if they truly have cognitive impairment?
  6. I talked to a new neuropsych today about getting reevaluated for my cognitive difficulties. We talked about everything under the sun mind you since he was kind enough to talk 1.5 hrs to me over the phone. He told me the thing with saying the wrong word is a sign of brain damage. For me I've had so many concussions they know I have TBI. But for others you might want to research if Sclero does damage the brain or it may even be the medications. Or maybe you boinked your head in the past too many times like I did. I do know from another neuropsych she said that certain infections, fibromyalgia and certain medications can cause brain damage so its not all physical injury that can cause it. Course if its meds or fibro causing it then it would be an ABI (acquired brain injury) not a TBI. It helps to use the right term when researching as ABI's affect different regions specifically.
  7. I was just thinking about 10 years before I was tested for ANA I used to wake up with swollen hands every morning. At the time I worked as a packer in a factory so I assumed the swelling was from overuse but who knows. Dawnies you didn't mention having a ANA test so I think you need to have that done if you have concern over skin symptoms. I have the shiny hands below knuckles and the skin is slick, textureless, no wrinkles on hand and also very slick and shiny on skin above fingernails. I used to have a slick forehead but I started getting wrinkles on my forehead which made me very happy. Yeah isn't it crazy what makes some of us happy! As far as the lungs go I would get it checked out by a autoimmunity knowledgeable pulmonologist.
  8. Hi Purplelibrarian, Don't worry any time you need someone to listen just come here. I think that's why we are all here. I'm 39 and have been diagnosed with CREST as my doctors still prefer to call it since I was around 34. But I think I've had it longer because an x-ray taken after a car wreck in my 20's showed my entire hip area calcified. Which the doctor just remarked as "well that's odd". I hurt all over too. I always blamed it on other things because I've had Lyme disease, plus x-rays show osteoarthritis in my knees and toes. But just about every joint hurts and muscles hurt and now the newest complaint is this weird burning sensation in my feet and lower legs. The rheumatologist I saw was equally unhelpful. He said CREST would eventually kill me and there's nothing he could do for me. He even refused to treat the pain which is in my opinion cruel. I was surprised though when the cardiologist told me "its no wonder you hurt all over because CREST attacks collagen in your joints" and he said "I bet your fingers hurt a lot don't they?" Wow someone who understands. :) He told me when he was in school he debated for a long time whether to become a rheumatologist or a cardiologist is how he knows so much about the illness.
  9. Oh and I forgot to even mention the mispronouncing part. I notice when I reread my emails I often type in the wrong word, sometimes things that rhyme with what I meant to say. Recently I made mom angry telling her "I'm coming to visit in March" she says I said but I swear I said "April" which is what I meant. So we got into an argument over that one. Its bad when family starts noticing I am getting weird. <_<
  10. I do the same things and I can't blame it on old age because I won't even be 40 for a few more months. I never gave it any thought it was sclero related. I also have a TBI and ABI injuries from repeated concussions and near drowning as a child so I just blame all my goofiness on that. I constantly forget things especially with cooking. Like last night I completely forgot to put fries in the oven so I had only a hamburger. I often forget to turn the oven on and waste 30 minutes waiting for the food to cook when the oven isn't turned on. Last weekend I decided to make pancakes from scratch and decided I knew everything by memory so I didn't need to follow the recipe. I ended up putting things in the wrong order so the batter turned out like glue. I do stupid things like hide stuff from myself, have found the toilet paper in the fridge. Once I was convinced I had actually tossed my wallet away in the garbage so I dug around in the dumpster looking for it finally gave up came inside and eventually found my wallet in a bag of laundry and why I put it there I couldn't remember. :huh: My first thought would be to blame it on medication but we all aren't taking the same meds. Like many have mentioned taking things like steriods or cellcept but I don't take those on a regular basis, so what's my excuse? Maybe its lack of sleep because I don't sleep well now for years. But then again I have the brain injury which I blame everything on. Like I was dizzy yesterday at PT and the therapist wanted to know why. I said oh I have these spells throughout my life, its probably just the brain injury. I've been run through a battery of tests twice for the dizziness and they never come up with an answer.
  11. Margaret, Some people may just walk around with their hands in their pockets because they like to, especially guys. Its just when they have other symptoms of dystonia and also walk around with their hands in pockets is when you might become concerned. Apparently it helps with quieting down tremors and helping to balance when walking is why someone would do it. Also people with certain kinds of dystonia sleep with their arms under the pillow to hold their arms still. Something else I do that is a listed symptom! And one other weird thing I do is when I sit in a chair I tend to tuck each hand under my leg apparently to hold them still. I've done this the past 20 years.
  12. Jill, The only thing I found helps the Raynaud's is taking Diltiazem plus sleeping in 2 pair of socks in winter, 1-2 pair in summer, wearing gloves outside in winter and avoiding touching cold things.
  13. Hi Miocean, I have CREST and have shaking hands which has suddenly become worse the last few months. I have discussed this some in other posts but I also have other weird neuro symptoms that have started including my teeth chattering together to the point it wakes me up, muscles quivers or spasms above my knees that happens at night, random quivers in my calf muscles. I've just started making this bizarre sound that seems to come from vocal cord spasms. I assume it is somehow related to the traumatic brain injury (TBI) I've also been diagnosed with. The symptoms I listed above all show up in Wikipedia as symptoms of dystonia including something else weird I do which is I walk better if my hands are in my pockets as I have a balance problem. That is also a symptom of dystonia. And people with brain injuries are known to get dystonia However the hand shaking is also symptoms of essential tremor and Parkinson. The neurologist has a 5 month waiting list so I am waiting to see someone to figure out what is going on. I did notice that after taking Zaniflex the hand tremor lessened. Zaniflex is a powerful muscle relaxer used for MS patients. My doctor just decided to try it because he's exhausted all other ideas to control pain and muscle spasms. Oh one other thing I am seeing a neurological physical therapist and he did point out I have tremor when doing something and also when at rest which is kinda odd. I think they call it attentive and inattentive tremors or something like that. Don't know if this is of any help since I have no clue what is happening with me.
  14. My skin seems to scar with just the tiniest of scratches these days and it didn't use to. I have scars on my arms from blood draws and the bleeding time test where they make a little nick with a razor. Plus I have the kind of calcinosis that causes white liquid paste deposits under the skin. After it dries up it leaves behind a sore that scabs over and leaves nasty scars. My forearms are covered in these scars. I never read anyone else talking about the liquid calcinoisis deposits, but I've read about it before on this website and other sites. Anyone else have this going on? Its looks like white paste they used to use in school that came in a jar with a brush in it. Very white and thick though sometimes it has yellow watery liquid inside.
  15. "When a doctor saysm "Live with it," that actually means, "I have no idea what to do and don't have the guts to say so!" " That reminds me of what the rheumatologist said to me. he said "Your ANA is borderline so you don't have CREST yet. But it will probably kill you and there is nothing I can do for you." Hence why I am treated by a very brilliant primary care physician for CREST as, yes, my ANA eventually sky rocketed and I got worse. The rheumatologist would not even treat the pain and he's the only rheumatologist for 300 miles. At least my primary care physician has kept me alive this long and does treat me for pain.
  16. Hi Penny, That story is probably the worse breech of ADA laws I've ever heard of. Or were ADA regulations not in place when this happened? Complaints about your cane making too much noise is just ridiculous. I'd like to know who said that and at what company so I could go smack some sense into them. Only thing is I can't stand up or walk long enough to do that and I don't want to make my hand hurt anymore than it already does. :unsure: But I can whack someone with my cane whilst sitting down. :) I just hate inconsiderate people who can't even spend 5 seconds thinking what it might be like in another person's shoes.
  17. "Your physical therapist (PT) sounds a bit like Janet's parents when they gave her until the end of the year to get better. " Could my family be related to Janet's? When I first told my family I was filing for SSD my father asked me to come live with him and my stepmom. But then he said "you know you are welcome to live with us, but I know you will get bored after a few weeks off work so you "HAD BETTER FIND A JOB ONCE YOU GET HERE". Umm.... B) I think that's why they call disabled people disabled and that's why you file for disability because you CAN'T work. He still doesn't get it that I have repeated brain injury, CREST and chronic Lyme in addition to asthma and heart problems and PTSD. But I really just need to pull myself up by my bootstraps and get another job you know and just suck it up. :rolleyes: The last job didn't like the fact I was limping, kept tripping on invisible objects and fell, dropped a $1000 instrument and broke it, plus I kept forgetting "how" to do my work and a few times I spaced out or something and suddenly paniced where this place I was in and that it seems I work here but I don't quite remember how I came to be here. Do you think a person like this needs to be working? :unsure: I haven't seen the family in over 2 years, but last time I was there dad pushed me around in wheelchairs in all the stores and I hobbled with a cane into the restaurants and they rolled me off the airplane in a wheelchair too, but guess he just hasn't figured out I can't walk well anymore. And when I do walk I fall alot. That's why I am in PT yet AGAIN. I fell twice in 6 weeks period reinjurying myself and then I fell a 3rd time a week into PT trying to put my shoes on. Reminds me of a good joke a fellow brain injury patient tells people that the 'NB' on her sneakers stands for No Balance.
  18. "If you have a crystal ball that tells you how long a flare is going to last, you're going to have a very long waiting list to borrow it. I'm #1 on the list, OK?" If I can get the crystal ball to working I'll for sure let you borrow it first. But I figure other people will have need for it for non-autoimmunity things. So I've decided to charge a small rental fee for each person who wants to use it to fund my retirement in case the disability case doesn't go through. ;)
  19. I had the same kind of pain years ago. They told me I had an irritated ulnal nerve. What finally made the pain go away was an accupuncturist put a needle in the pressure point next to the clavical bone where the nerve travels up and it cured it. The nerve was pinched was all.
  20. Does it mean anything if mild pulmonary hypertension (PH) shows up twice on Echos, then the last Echo I had was normal 3 months after the last time PH showed up? I mean should I start counting down to 3 years? Are there symptoms of PH other than things that show up on Echos? Like breathing problems or something?
  21. I hope I won't get in trouble for saying this but I think everyone needs to be really careful these days whenever medical employees of any kind start scaring you. I noticed since the economy has gotten bad medical employees (I would call them professionals but they aren't acting very professional) have tried to insist upon a number of tests and procedures that make no sense. The radiology department tried to force me into surgery for something my doctor said was not of concern. When I refused they started calling me on phone and sending harassment letters to try to force surgery. Then it was reported in the newspaper how the local hospital was worried about having to layoff employees because people were not scheduling surgeries due to the economy. Then another doctor tried to force me to go to another clinic he owned mind you for testing for something that I did not have symptoms of. Then yet another specialist tried to force two elective surgeries when my medical history indicates I should not undergo either procedure. Now my physical therapist is insisting on 3 visits a week instead of the 2 a week prescribed and yep it looks like they don't have much business as its very quiet in there most times I go. So moral of the story be really careful right now because there are those just trying to profit off sick people. I'm glad your doctor said to just watch the nodule because it sounds like he's a good guy. If he'd been fast to want to biopsy it then I would ask for a second opinion. Lung biopsies are risky and can lead to dangerous infections.
  22. Well the word from the doctor is he thinks its definitely autoimmune related. He ordered a couple days of predisone to see if it responds to the medication and if it does he said its a strong indication of it being autoimmune. He asked me three times if I consented to being on steriods because its something both of us have fought to keep off of. I've also had a long battle with Lyme disease and steriods can make Lyme worse since it lowers ones immune response. Some experts say Lyme can never completely be eradicated from the body. So I said ok two days if you think its safe to take them. I won't start the meds till tomorrow. By the time the pharmacy had it ready it was evening and the pharmacist said it will keep me from sleeping if I take it this late. The swelling had gone done some overnight but tonight the severe burning pain is back and that horrible skin tightening feeling in my lower legs. I guess others know the feeling right? :unsure: My phy therapist thought I was weird explaining the skin tightening as if I was making it up. The PT also wanted to know how long this flare was going to last :angry: so she would know how long she has to wait till she can go rough on me again. So I just bluntly said could be one day or could be rest of my life till it kills me whenever that is. Oh, they need to teach everyone in medical profession what autoimmunity is all about.
  23. I have a finger that is extremely painful to bend and isn't very flexible. To make matters worse I jammed it into the asphalt when I slipped on the ice in December. Yeah now it really hurts! I have trouble with dropping things and have for years though never thought that it was Sclero related. I also have a brain injury from long ago so just blamed clumsiness on that or possible other neurological condition. :unsure: I have developed tremors in past year so was referred to a neuro movement disorder specialist but there is a 5 month wait on an appointment with the closest neurologist who is still seeing new patients. B) So I don't know the answer, but am having somewhat similar problems.
  24. Last night I noticed the tops of my feet had swollen up. Hadn't been on my feet much all day, so no reason I knew of for them to swell. Overnight the left foot swelling went down but the right foot looks like a waterballoon with toes attached. I put ice on it and elevated it but didn't seem to help. I've had swollen feet before but even when I have broken my foot before I never got this much swelling. Its actually unreal the size of it and its weird because the tops of my feet have this burning sensation. Also the swelling has caused a capillary or tiny vein to burst on the top of my foot. I also have that sensation in my lower legs of skin tightening like I've gotten before with the CREST as it really affects my lower legs at times. Could this swelling be CREST related? I don't know if its related but last week at my physical therapist they sent me home early twice because I came in with burning sensation in my leg and arm muscles which I told them feels like that feeling you get with having lactic acid buildup. But there was no reason to have lactic acid BEFORE I started my exercising. I don't think the physical therapy (PT) is causing these problems though because its only for the arthritis in my knee and for balance issues that I am doing PT, meaning its not an extreme workout. Now I think perhaps this burning sensation in muscles and in tops of feet is CREST or Sclero.
  25. First off relax and try not to panic. A 10mm lung nodule showed up on a CT scan I had done in November. The radiologist was so gung ho to scare people he treated me like I was going to die when I had a PETscan as a followup. A pulmonologist determined that I had had Valley Fever. There's lots of things that can cause lung nodules. I've even been told that the majority of people in the US have a lung nodule, most often caused by histoplasmosis. There's blood tests you can take to rule out tuberculosis, valley fever, sarcoidosis and some others.
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