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Posts posted by CraigR

  1. I have pulmonary hypertension. It has never been painful. The only symptom for me has been breathlessness. In fact, until the breathlessness became obvious, I wouldn't have guessed a thing was wrong. Rather insidious...


    Good Luck



  2. Shelley,


    I think I'm a little misunderstood. I don't have the situation of a rheumatologist constantly running tests - we are looking at a test that may be run once every 3 or 4 years, especially if there is a change. Since I've had the disease for 33 years, perhaps I forget about those who are stuck in the crazy situation of trying to get a new diagnoses. But people should be aware that tests can be wrong or inaccurate, and not put so much trust in a single test (especially if trying to get a new diagnosis). The time that I had a negative test, my rheumatologist wrote it off as a bad test, since the severe symptoms were still there, and spontaneous remission from Sjogren's is highly unlikely.


    And of course the assumptions aren't even conclusive. I have always had a negative Scl-70, which I hear is associated with lung problems, yet I have pulmonary hypertension.


    My philosophy, if you have a rare disease is that you must endeavor, as much as you can, to try and be your own doctor a much as you can. I don't engage in any treatment that my research doesn't agree with. Doctors may be good sources of information, but the decision is mine.


    I'm often reminded of a nonsensical statement my father used to say: "Never forget that 50% of all doctors graduated in the lower half of their class."



  3. (If it hasn't been mentioned) dry eyes and mouth are frequently caused by certain drugs.


    I have Sjogren's, with a Schirmer test of barely 1 - but I only need to add eye drops every few days. It's far worse at night - when the mouth becomes so dry that the tongue gets inflamed.


    I usually always test positive for Sjogren's antibodies but have had occasion to test negative, so the test can't be relied upon to always be correct. On account of this, I like to be sure and get the Sjogren's test any time I am tested for autoantibodies.



  4. Based on my experience, I would recommend a lawyer - and don't be surprised if they turn down your appeal.


    After being turned down the first time, I went to a lawyer who sent in the appeal, complete with citing the statute law concerning qualifying for disability for scleroderma (with multiple complications) and Sjogren's syndrome. Based on the the statute, I was more than doubly qualified. The appeal was again denied. The statute law was completely ignored. I was basically told that since I had two arms that worked, I was not disabled. Thus it seems that it must go to a judge.


    According to the law, scleroderma with two systemic complications qualifies. I have had slow-onset (CREST) scleroderma for 33 years. With secondary Sjogren's, Raynaud's, Pulmonary hypertension, Peripheral neuropathy in feet, osteoporosis, complete hip replacement, frequent debilitating bouts with myalgia and anemia. Much of this was made worse by a bout with Burkitt's lymphoma several years ago, which included a stem cell transplant. I worked up until last July.


    Needless to say, I am quite bitter with this process.



  5. Did you get tested for inflammation (Sed Rate, CRP)? These tests are non-specific (don't tell you what's causing the inflammation), but it can be very helpful to know if you have an inflammatory process going on.


    Good luck,



  6. You may find that this disease is very particular to the individual.


    CREST is usually a systemic form of scleroderma (meaning that it can effect other organs than the skin). It is usually differentiated from "diffuse" scleroderma, which tends to come on rapidly and involves severe skin involvement.


    Some view CREST as a dated term, since so many different forms seem to exist. My diagnosis was originally CREST, though it would be CRST, since I have no esophageal involvement. However, I have pulmonary involvement (thus it is systemic), as well as secondary Sjogren's syndrome.


    Good Luck,



  7. Miocean,


    I have had trouble with low hemoglobin since I went through chemotherapy for lymphoma 7 years ago. In addition, I have pulmonary hypertension to make breathing more difficult.


    I can almost guess my hemoglobin level by how quickly I get out of breath. There is a direct correlation.


    Your level of 7 is very low! It is know doubt that you are short of breath at that level. I would be surprised if I could walk across a romm with so low a level!


    Procrit helps me a great deal.


    Here is a simple way that I use for undertanding the effect hemoglobin and breathlessness:

    Hemoglobin is the measure of red blood cells. Red blood cells carry oxygen to the tissues. Think of the red blood cells as little "trucks" that deliver the oxygen. When you have fewer "trucks" (low hemoglobin), the same trucks must make many more deliveries by "driving" much faster. The trucks can only drive faster if the heart speeds up to push them along. Thus the heart must work much harder to push the smaller number of "trucks" along to make the oxygen deliveries. The result is that the heart and lungs are working much harder and become exerted much sooner.


    Years ago some athletes engaged in a (dangerous) practice called "blood packing", where they had transfusions of red blood cells (usually their own, which had been saved), even though their level was normal. The higher than normal level gave them much more endurance. However, the risk of fatal blood clots hadly makes it worth it...


    Have you been tested for pulmonary hypertension? The only truly accurate and reliable means is by right heart catheterization. Echocardiogram is also used, but is much less reliable.


    Good luck,



  8. Mando,


    I have secondary Sjogrens, and sometimes the antibody tesy comes up negative, but usually positive. The Schimmer test was most revealing for me. The little piece of paper came out almost completely dry, well into the area indicative of Sjogrens.




    When your rheumatologist said there was nothing she could do, that should be translated as "I am too poorly informed or lazy a doctor to know how to treat this condition".


    There are many treatments avaliable. Drugs such as Salagen and Evoxac as well as helpful mouthwashes and saliva substitutes, and special toothpastes. The doctor should also do more work to draw a definite diagnosis.


    Time to shop for a better doctor. Would you accept such lousy service from your mechanic?



  9. I am a 55 year old male with scleroderma. For the first 25 years, there was little trouble other than Raynauds and some muscle aches. This disease tends to effect everyone differently, so it is very hard to try and predict your future as far as pain and activities go. However, you can plan on a future of trying many different drugs and therapies, since we all are effected so differently. Be careful with anti-inflammatory steroids (Prednisone, and a few others). They can make you feel great - but can have serious side effects.


    Good Luck,



  10. My rheumatologist definitely considers CREST a form of progressive systemic sclerosis, or scleroderma (another term for PSS). CREST tends not to have the quick, whole-body effect of the diffuse form, though it effects internal organs, as with pulmonary hypertension. I have CRST, without esophageal symtoms, but have pulmonary hypertension.


    The more people that I get to know, especially through our scleroderma support group, the more it appears that the disease is unique to each person, and the old "CREST" term may be too dated a way to differentiate.


    I tend to think of diffuse as "raging" scleroderma, since it tends to come on quickly, with obvious disabling problems. CREST, for both me and my father, started out as nothing but cold hands for the first decade or two and progressed slowly to be incapacitating. Thus, I think of it as a condition that slowly creeps up on you.


    Good luck,



  11. Vanessa,


    There is an auto-antibody (blood) test for Sjogrens, as well as the Schimmer (sp?) test that measures the moisture in the eyes, and also a test that uses a biopsy of the lips.


    I have seen Flouxetone on lists of drugs that can cause dry-mouth. Alcohol can have a drying effect, especially when it substitutes for water.


    When I have awoken with a painfully dry mouth, gargling and swishing mouthwash for dry-mouth has been helpful (much better than water alone). However, be sure to rinse with some water, since residual mouthwash can cause a cough if you fall back to sleep and it flows deeper in the throat.


    Good Luck,



  12. I get something very similar - in the upper body. It is also very similar to the feeling of a very bad burn from too much exercise. It usually starts in my neck or shoulders, and then travels down to my chest, making it painful to breath.


    Anytime this is going on, I have increased inflammation indicators. You may want to get this tested. See how the tests come out during an episode and when you are feeling better. The tests are Erythrocyte Sedimentation Rate ("ESR" or "Sed Rate") and CRP ("C" reactive protein). This may provide evidence of an inflammatory process)


    Good luck,



  13. I've had Raynaud's for 32 years, and I've never been able to predict when it will get worse ( short of the cold season...). I'm not a medical professional. Like the other replier mentioned, it is very important to keep your core temperature up. I find that no amount of gloves help much if I let my body temperature drop (this can be very easy to do - as easy as drinking a cold fluid).


    I've also found that heavy use of my hands makes it worse.


    The most serious pain (as well as potential for infection) comes in the event of getting fingertip ulcers. I'm sure you can read about that on this site. There are many helpful medications for peripheral circulation - these can be especially helpful with ulcers.



  14. We had one of the top PH doctors in the country speak at our support group.  Some of the things that you might find useful:


    Think of your heart as two pumps.  The big, strong one is on the left, and pumps blood to your body.  This is the pressure that is measured when the cuff is put around your arm.  Thus, what they call your "blood pressure" would more correctly be termed the pressure of the left pump, which pumps out to the body.


    The pump on the right is much smaller and weaker and pumps to the lungs only, to get the oxygen that is later pumped to the body (by the left side of the heart).  Since it is so much smaller and weaker, the normal pressure is much lower, like about 30/10.  If it were 90/60 (low for the left pump), you would be very ill with very severe PH.

    Since it is not possible to put a cuff around your lungs to measure the pressure, this must be done through an echocardiogram (not very reliable or exact) or a right heart catheterization (more invasive, but much more reliable and accurate).


    (It was interesting to note that this specialist said that he deals with many doctors who are completely ignorant of the fact that the right side of the heart is a much smaller, weaker pump).


    The biggest threat from PH is heart failure on the right side due to the high pressure (much the same as left-side high pressure can lead to heart failure from overworking the heart).


    As far as the question of stress affecting PH, you can see that it would be difficult to tell, since you can't easily and quickly check it, as you could with left-heart blood pressure (what is usually termed "blood pressure").


    A suggestion: when you get a PFT be sure to check the "diffusion".  This tells how much of the oxygen is being absorbed by your lungs.  In my case, all the other figures were very high (the tests for ability to move volumes of air), but the diffusion was low.  This took a specialist to figure out.  I later found out that lowered ability to absorb oxygen tends to lead to lungs that move more air, especially among those who get a lot of exercise.


    I strongly agree with the other replier who recommends a PH specialist.  Preferably, a center that is known for this work is best.  Some of the medications can be very expensive, so there may be the ubiquitous fight with your insurance...  It's much harder for them to say no when the prescription is coming from one of the top doctors on the subject.


    As a PH patient, I have had times of severe PH, but there was never any pain or coughing.  My only symptom was extreme shortness of breath (so much so that simply walking across a room would require that I sit and spend quite a while getting my breath.  But these diseases can affect us all so differently.


    Good Luck,



  15. One of my first pulmonary function tests (PFTs) showed me to have very high lung capacity. I was getting a lot of exercise at the time, though having a bit of shortness of breath.


    I learned that higher than normal lung capacity can often be a symptom of early-stage lung disease, especially for those who get a great deal of exercise.


    The problem, however, is with the lung "diffusion" - which is a measure of the amount of oxygen absorbed. This figure was about 70%, indicating that the lungs were not absorbing as much oxygen as they should, so they tend to increase wind capacity to overcome this. It took a pulmonologist to figure this out. My regular physician looked at the high capacity and figured that I could not have a problem. A few years later I was diagnosed with pulmonary hypertension.


    Thus I always like to keep a close watch on my "diffusion" figure any time I have one of these tests.



  16. When I've had itch problems, the only relief at the time of the itch is cream containing benzocaine.


    Though I can't explain it, I seem to itch less when I shower rather than bathe in a tub(?)



  17. I had my first symptom (Raynaud's with mild ulceration) 32 years ago when I was 22. I took procardia occasionally, especially when fingers ulcerated (which can be extremely painful!).


    About twelve years ago came down with secondary Sjogren's syndrome, then a mysterious inflammation flare-up nine years ago (went away after a few months and some steroid treatment).


    In 2002, I came down with Burkitt's lymphoma, which was successfully treated with chemotherapy and an autologous stem cell transplant. Since then, the sclero problems have been much worse, including pulmonary hypertension (a common secondary involvement).


    There are many useful drugs available for Raynaud's - including many of the erectile dysfunction (ED drugs). Different things seem to work for different folks. You might search some of the postings if this interests you. It sounds like you are not having trouble with finger ulcers, so you may not need a lot of help.


    I agree strongly with others who recommend a scleroderma expert. Other doctors seem to know very little about this disease. As much as possible, you should try to become an expert! To make it more difficult, everyone seems to have a different version. I for instance, have no esophageal problems - but severe lung problems.


    I think it is wise to know your inflammation indicators. These are common blood tests that let you know if you have inflammation. Erythrocyte Sedimentaion Rate ("Sed Rate" or "ESR") and C Reactive Protein ("CRP") are two of these. These are non-specific - which means that they indicate inflammation from any source (the flu, cancer, scleroderma). Generally, the worse you feel, the greater the inflammation. Some of the folks on this board can guess their sed rates by how they feel.


    Did you get a diagnosis from your heart catheterization? I ask this because your symptoms could be due to pulmonary hypertension or fibrosis - which are common with scleroderma. Right heart catheterization is used to diagnose PH. These lung problems cause shortness of breath, which could seem similar to heart disease.


    I applied for SS disability and was turned down. I've since gone to a lawyer (my experience is posted under "Disability Question").


    I generally hear that 90% or more cases are female. However, in my family it's only been male - me and my father. My sisters and other women are not effected.


    Good Luck - get an expert and learn all you can!



  18. I met with a lawyer - who started by pulling at his hair over how absurd the denial was.


    He pulled out the actual law code and said that I more than qualified for scleroderma, but also met the qualifications for Sjogren's syndrome. So that is the first appeal level.



  19. I had an interesting discussion with my rheumatologist concerning disability eligibility. It was encouraging when she told me that she had never known a patient more deserving of benefits!


    When I originally submitted the information, I did a detailed summary of my medical history, but this was not made use of, as they went about "filling in the fields on the computer screen", which excluded an extensive explanation (including the entire cancer history).


    Needless to say, I will use the summary in the appeals process, with great detail of all symptoms (I had assumed that the mention of a serious disease made the effects/symptoms obvious, but apparently not. Also, I have a tendency to play down medical symptoms, as I find such things tiresome when there isn't anything that can be done). Guess I will have to work on becoming a bit more of a drama queen!



  20. I got word from Social Security - and I was denied.


    So I guess now is the time to get a lawyer.


    I was surprised at how their summary of my medical condition seemed to trivialize things: e.g. - "occasional fatigue" ("constant" would be more correct). I guess if you can get out of bed you are denied.


    There also appears to be an error: They state that I said I could "stand and walk up to 6 hours in a normal 8 hour work day" That was for a different job, that I haven't done for 8 years.



  21. I developed a high frequency heraing loss with severe tinnitus. No previous exposure to any loud sound, so that wasn't the cause. It mainly causes speech to sound garbled - sort of like the person is mumbling - and nasal voices are very difficult to understand. I wear hearing aids if I'm going to be in a difficult situation. I have sclero (CREST) and Sjogren's.



  22. Thanks to all for your input.


    I had my interview on August 20, and things seemed to go well. I did my homework, so I had everything that could possibly need at that point.


    My Rheumatologist is a very good spokesperson for me, so that will help. Also, we have a local area sclero support group , and they have been giving me good advice. I am confident that it should be approved, sooner or later. As with you folks, the experiences of the support group people have varied. Some seem to think that they almost always turn down claims the first time, but later they have success. So on with the process...


    With the initiation of the process, I went into a terrible depression, and have gotten help. Looking back, I probably should have done this a few years ago, but staying at work let me sort of deny the problems. Also, since the disease varies so much from day to day, it's easy to feel, on good days, that there isn't much of a problem....then along comes a bad day when I can hardly get out of bed...



  23. I am considering going out on Social Security disability, but I need to find out the likelihood of being accepted. If I am not accepted, it would be a terrible financial blow, especially regarding ultimate Medicare coverage.


    I am 54, have slow-onset (limited, CREST) scleroderma with secondary Sjogrens syndrome and pulmonary hypertension. Also have a history of lymphoma (in remission past 6 years). I have peripheral neuropathy in my feet from chemotherapy/sclero. Have had complete right hip replacement due to avascular necrosis, and have recently had diagnoses of lumbago, sciatica and osteoporosis. I also take blood thinners for a history of blood clots in my legs.


    Presently I work 20 hours/week as a financial analyst, but I want to go out on complete disability, perhaps in a month.


    Any ideas of what my chances would be of getting SS disability? I am also planning on making an appointment with the local Social Security office to see what they recommend.


    Thank you!

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