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Everything posted by CraigR

  1. Danny, Good that you don't have Parkinson's. I've had tremors since I was a teenager (about 35 years ago), diagnosed as "benign essential tremor" (BET or ET) which seems to mean "we don't no what causes it, but it doesn't seem to get worse". I've heard that this can be hereditary. I take Inderal (Propanalol [sp?]) if I need help (rarely) with it - probably the same medicine your doctor recommends. I'm not a doctor, but here is something I researched that can distinguish these tremors: Parkinson's has a "resting" tremor and BET has an "intention" tremor. This means that with Parkinson's, you are more likely to notice the tremor at rest, such as in an arm that is resting freely at your side. The BET intention tremor tends to be more noticeable when you use the muscles, such as when lifting a full cup. or otherwise raising your arm.. The head may also shake, since the muscles holding the head up must have some tension. I've heard that this (BET) is quite common, and famous people with it included Katherine Hepburn and Ronald Reagan. It is also said that alcohol can reduce the tremor, which sometimes encourages abuse. For me, alcohol does not seem to have any effect (on the tremor, that is!). Craig
  2. Clementine: Did the doctor look at scans, or just manipulate your leg? Ten years ago I went in with similar symptoms. The doctor had only manipulated the leg to make the diagnosis. He thought it was torn meniscus, but it turned out to be chondromalacia when he did the arthroscopic surgery. The doctor, as so many, believed that it might have had something to do with sclero, but it's fine now, ten years later Craig
  3. You don't mention whether this is a rheumatologist or a family physician, wich can make a difference. Nevertheless, it seems like a second opinion is in order if a doctor doesn't seem to want to do something about a very painful situation... Craig
  4. Your sed rate sounds great - especially if you have autoimmune disease. Normal for me is about 40 - which is high and indicates inflammation somewhere. When it reaches about 60 to 80 I feel quite ill. SED rate is very non-specific - any sort if inflammation can cause it to go up: arthritis, flu, fighting an infection, cancer, etc. 0-20 is normal for females, 0-15 normal for men. If you have sclero and your rate is within these norms, you have very little inflammation. I have an ongoing joke with my rheumatoliogist that I can guess my SED rate by how I feel. Craig
  5. I didn't see (or maybe just missed...) whether or not you had a panel test done that checks for the various autoantibodies for sclero, lupus, Sjogren's. etc. This sort of test can be very helpful for diagnosis. Your difficulty with your doctor reminds me of an absurd (but prophetic) thing my father used to say: "Never forget that 50% of all doctors graduated in the lower half of their class". Seems like you need to find someone in the upper 50%? Craig
  6. Have any of you experiencing this neck pain had an xray? The reason I ask is because I get chronic myalgia that always seems to start on the left side of my neck (trapezius?). It comes and goes. My orthopedic surgeon x-rayed it and found no arthritis or any joint problem. So it had to be muscular. It is common to follow physical exertion (and occasionally emotional stress). It starts at the neck and moves to the shoulder, and sometimes to the chest, making it painful to breathe. When I have a bad attack, my SED rate is always high - an indicator of inflammation Currently it seems to be effecting my upper left hip. I take acetominophen (can't take NSAIDS because I take blood thinner), as well as a narcotic pain reliever). For those who can take NSAIDS, aspirin, naproxen or ibuprofen might help. I agree with the others about avoiding prednisone. Too many potentially serious side effects for any but a very serious (life-threatening) need. I also frequently get muscle cramps at night. I am convinced that sclero has more effects on muscles than the doctors seem to recognize. Many things can cause neck pain - but if it seem chronic, and other causes are rulled out (like arthritus), it seem that sclero-related myalgia could be the cause. It certainly seesm that way for me. Craig
  7. I get them on my face - and they are permanent. However, I've had some success with laser surgery to have them reduced. It doesn't seem to make them go away entirely, but they can be reduced so there isn't such a speckled look. Make-up isn't my style - maybe if I were a rock singer? a clown? Craig
  8. It sounds as though your doctor, who doesn't think you have sclero due to lack of skin involvement, has very little experience with sclero (as is the case with most non-rheumatologists). If you read the postings on this site, you will see that there are many different manifestations of sclero - even a form that only effects internal organs. Get to a sclero specialist. Your tests certainly point to autoimmune disease. Positive for Sjogren's is certainly a key indicator - and it is often secondary to other autoimmune/connective tissue disease. Craig
  9. I have CREST (CRST) scleroderma, and so did my father - so I assume some sort of genetic component. Though there are plenty of cases with no one else in the family with autoimmune diseases so ??? Craig
  10. Donna, Among the many medical facts that you may want to keep aware of is your creatinine level (I believe 0.9 is about normal for a person with two kidneys - though I'm not a doctor), as well as your blood pressure. Both of these can have something to do with kidney function - and as you know, with these diseases kidneys are sometimes at risk. I have one of those automatic blood pressure devices that I got at a pharmacy. Good for checking to see if you have a spike in blood pressure (which could mean many things beside possible kidney problems). It is also handy if you take vasodilators for Raynauds (to make sure your blood pressure doesn't go too low, as many doctors are hesitant to prescribe these drugs for fear that the pressure may go too low. They may be more likely to prescribe if you promise to check). A friend's husband had to have a kidney transplant because of long-term high blood pressure (no autoimmune disease). He had never had it checked, and it probably could have easily been traeted if he knew. - So a good thing to keep track of! Craig
  11. Smurfette, Your's sound like classical migraines - what with the the visual disturbance ("scintillating scotoma") and hair aching. The other common symptom I've heard of is need to be in the dark (photophobia). I point this out because I've heard people refer to any severe headache as a migraine, and that is mistaken. My father had sclero (CREST) and had these headaches. He took a vasoconstricting drug called Caffergot, but that was decades ago so there's sure to be better stuff now. I can remember these well from my childhood, as I would come home from school and all the blinds would be drawn and my mother would whisper to go outside and play, as my father could not stand any sound. My understanding is that these headaches occur following a vessel constriction to the head. The headache comes on when the constriction lets loose and the blood flows as it should (sort of strange). This would be why vasoconstricting medication would help (though be bad for Raynauds). This would suggest that if you could prevent the constriction to begin with (perhaps with a vasodilator) the process might be stopped or reduced. But I'm not a doctor. Since it is a vascular headache and sclero has other vascular symptoms (Raynauds, pulmonary hypertension, etc.), it certainly seems they could be related. I also have sclero (CREST, actually CRST), and it accompanied with epilepsy! (very easily controlled). There is a very distinct aura. It is sort of a mixture of tunnel vision and a sense of doom. Though never diagnosed, I believe that my epilepsy is caused by the same vascular process (there are known cases of seizures caused vascularly). It makes perfect sense. I read in a medical book ("The Etiology of Epilepsy") that there is a much higher rate of epilepsy among people with Raynauds, which points to a likely vascular cause. It's even more compelling with migraine. More reasons why you have to be your own doctor at times. They usually aren't very imaginative if the issue isn't life threatening. Craig
  12. There are various OTC eye lubricating drops that do not contain serious medication, like restasis, so they can be used more often. Many medications can make it worse - particularly those that tend to cause dry mouth. Caffeine should be avoided, as it has a drying effect. Craig
  13. I agree with others that you are making it harder by keeping it so private. Your world is thus a bit out of kilter with reality. I tell people when it becomes an issue. It's usually like this: "I have an autoimmune disease called scleroderma, which is similar to lupus" (more people have heard of lupus) and might go into some of the symptoms that might be relevant (like that I won't be able to sprint up the beach with peripheral neuropathy and pulmonary hypertension). Most people are understanding, and drop it at that. This is fine with me, as I want their understanding, but don't feel a need for their support (also being a rather private person). But again - only as far as it matters to the situation - such as letting people know that you have a hearing problem (which I have...). The less drama, the better. I've never run into anyone who is annoyingly curious. I have some balancing problems, so I occasionally walk with a cane. Sometimes I use my cane even at times when it isn't really necessary. It seems to do a good job of informing people that I've got some trouble. (I have no idea how you might apply this...). When dealing with people who are as you describe your parents to be, there is little you can do but let then know the situation, then inform them when you are limited by your symptoms ("I won't be able to make it - I'm in a lot of pain due to a flare up"). They will never relinquish center stage for their drama. Craig
  14. The dogtor is available several days a week, at the local dog park, when not wrestling with a beagle or trying (hopelessly) to race a greyhound. Does your insurance pay out in tummy rubs? Craig
  15. Liz73; Good that you will be seeing a rheumatologist and not just a family doctor (I think my dog knows more about scleroderma than your average family doctor...). Hopefully, it will be a rheumatologist with a good background in scleroderma. The rheumatologist should be able to get your blood tested for antibodies for specifics autoimmune diseases (the test order my rheumatologist uses is called "Lupus Analyzer Panel" - but it tests for more than just Lupus). This can be a great help with the diagnosis. Insist on copies of your lab reports. Be tenacious with getting a correct diagnoses and get another doctor if you aren't getting answers. (or you could consult with my dachshund...) Craig
  16. I finally had to post on this thread after reading about Truman and the mosquito sprayer. Ages 7-10 I lived in Okinawa (my father being a Marine officer). Periodically a truck would go by spraying insecticide (probably DDT) throughout the neighborhood. The whole place smelled of the spray. Perhaps a contributor? I find it difficult to try and guess at causes, since the variables are virtually infinite. So many chemical (e.g.- asbestos) were routinely used. Many common old agrucultural chemical have now been banned. I spent many childhood hours wading through the creeks and ponds in Okinawa looking for fish and frogs. They were probably full of dangerous chemicals, what with the place having been bombed to smithereens less than twenty years earlier. I've done quite a bit of furniture refinishing as well as work on cars, so there are more chemicals. Since my father also had the disease, I'm inclined to assume that there is something genetic involved. Strangely, my two sisters show no signs of autoimmune disease - so in my family it's been only men that get this mostly female disease. My father was thought to have been effected by the "Agent Orange" defoliant used when he was in Vietnam. He said the stuff fell from the sky like rain. But he already had signs of scleroderma, and thousands of vets didn't seem to be effected... I think that we have a genetic weakness that can be set off by environmental factors. Some get scleroderma, others might get hypertension. It's difficult to draw conclusions when there aren't double-blind tests and good statistics to back up conclusions. Craig
  17. You might never develop fibrosis. Like you, I have pulmonary hypertension, but little, if any fibrosis. The immunosuppressant drugs used to treat fibrosis can have dangerous side effects. Suppressing your immune system can increase the likelihood of infection or cancer - so probably not a good idea to take prophylactically for a condition that you may never get. A while back there was some discussion about the PH drug Tracleer (Bosentan) possibly also having anti-fibrotic properties. I haven't heard any other news about this. So, if you take Tracleer, you might also get this benefit. Your posting doesn't mention if your taking anything for your PH. Craig
  18. Good point by Barefut about kidney involvement. My understanding (and I'm not a doctor) is that the kidneys have a way of signaling the heart to increase blood pressure. If the kidneys aren't getting enough blood (due to clogged arteries or some other malfunction), they tell the heart to increase pressure. Increases in blood pressure can indicate changes in the kidneys, which is why scleroderma patients are often advised to check pressure frequently. The standard blood pressure test only tests the pressure on the left side of the heart (the side that pumps to the body). The right side pumps to the lungs, and is more complicated to check (as those of us with the fairly common symptom of pulmonary hypertension can attest to). My regular blood pressure tends to be on the low side - even though I have pulmonary hypertension. One other issue is that many of the drugs that can help Raynaud's also tend to reduce blood pressure. Thus if your pressure is already a little low, your doctor may be hesitant to prescribe these drugs. In summary, it can be a good idea to acquire one of those automatic test devices from the drug store, and keep track of any changes either way... Craig
  19. I was diagnosed with "borderline" diabetes (an old-fashioned possible description of type 2) long ago when I was a teenager, and somewhat overweight. My fasting glucose is always normal, but spikes somewhat during a glucose tolerance test. Doctors have told me that if fasting glucose is normal, there's no diabetes (???) Paternal grandmother had it. Due to this, I've always kept myself thin to avoid having it worsen. Craig
  20. I agree with others who recommend a scleroderma specialist. Most doctors know little of scleroderma. You don't mention any drugs to help with circulation in your hands. There are many that can be quite helpful - different drugs seem to work for different people. It can be the difference between painful hands full of finger ulcers, and useful (if cold) hands. Prazosin and Adalat (calcium channel blocker) made a huge improvement for me. Others have had success with nitro cream, Viagra, Cialis, Norvasc. You might search through older postings for this information. Good Luck, Craig
  21. When I had my "mystery inflammation condition" (no one could figure out what caused it) several years ago, I took that taper pack that starts with 60 mg. and goes down by 10mg. each day. Felt great until I got down to 30 mg, at which I no longer had the energy to sit in a chair. I then had to taper very slowly - at most 5 mg. each week until the condition abated. Very mysterious. Hard to judge just how long it takes for the problem to improve. I spent a long time (few months) at 5 mg before going off completely. The lesson I got was to taper very slowly, and be sure you feel okay before going any lower. This is (yet another...) area where you often can't trust the doctors, and must take over. When I spent time last year in a rest home due to a blood clot in my leg (extremely painful!), I was on high doses of a narcotic pain reliever. When I left, the doctor cut the dosage in half- much too fast a taper! Fortunately, I had extra medication so I could taper much more gradually. I had no trouble tapering off the medication (my way!) - in spite of a silly doctor who thought I would become an addict. Craig
  22. It sounds like you may have tried to go off suddenly (when contrasting with your doctor's recommendation for tapering). My understanding is that it is very dangerous to go off prednisone suddenly because, while taking the medication, your body has stopped making cortisol. Thus you must go off it slowly (gradual taper), so your body gets a chance to start making its own cortisol. Several years ago I had an inflammatory condition (sclero related) and was on prednisone. It became obvious when the level was too low - I felt like I didn't have the energy to even sit up in a chair. But I was gradually able to taper off as the condition improved. Craig
  23. Get it checked. If you suspect gout, be sure to get a serum uric acid test. My understanding (though I'm not a doctor) is that gout has to do with your body having to high a level of uric acid which can form painful crystals in joints. This can be effected by what you eat - foods of high "purine" content are not good (often high in red meat, thus the reputation of gout effecting the well fed and wealthy, such as Henry VIII). Some of my grandparents had it. There are good treatments available. Craig
  24. I think we might be somewhat confused about how this (these) disease(s) are characterized. "CREST" or limited scleroderma is systemic. Non-systemic scleroderma generally limited to a skin condition (say, on the arm) but does not have organ involvment. Perhaps "diffuse" is a better term for the most severe form(?). The diffuse form seems to "rage" when it comes on. The more people I meet with this disease, the more it seems like everyone has their own version. So it can be quite difficult to categorize, and unpredicatable. As a CREST (actually CRST) (limited) sufferer, my disease (as well as my father's) was very slow and insidious, starting out with cold hands (as a child I was told that dad had cold hands because he smoked) and a common "heartburn". He was in his fifties before serious pulmonary problems brought a scleroderma diagnosis. I've never had heartburn a day in my life - but my first Raynaud's attack was serious enough to cause ulceration. My father also had migraines - and I have epilepsy. Probably related to vascular issues due to scleroderma. In my own mind, I think of "diffuse" as "raging" scleroderma (when it comes on you know you're sick!) and limited (CREST) as "insidious" scleroderma (it may take decades before the symtoms are severe enough for diagnosis). My 2 cents worth... Craig
  25. I agree about using Biotene products. Toothpaste and mouthwash. When I wake up in the night with a mouth like the Sahara, I usually swish around the mouthwash - it's much better than water, and helps with the feeling of inflammation. I also buy the little breath mints (In the jumbo quantity!) that come in the plastic containers, and keep them handy everywhere. They are great for encouraging saliva. I've even suggested to the Biotene company they manufacture a medicated version - but they suggested I try their gum. I don't care for gum chewing. Have you had the Schimmer (sp?) test? They place a little slip of paper in your eye, and measure the length of the liquid on it. I think the numbers of 1-5 suggest possible Sjogren's. I was a 1. I've had Sjogren's for about ten years - I'm told quite severe, but it doesn't seem to have effected my teeth. I'm 53 and never had a cavity. I went to the dentist a few weeks ago with a slight toothache. Thought I had my first cavity - but it turned out to be a cracked tooth and they did a root canal (not nearly as bad as I'd heard). So that's what it's like to have teeth drilled... Great teeth seem hereditary in my family - though I'd gladly trade them for better health elsewhere! Craig