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scleroguy

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About scleroguy

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    Senior Bronze Member

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  • Location
    Southern California
  1. Disability

    Congratulations Sweet! Your hard work paid off. Best wishes.
  2. Social Security Disability Approved!

    Hi Peggy, I am so happy for you. My experience with Social Security was similar to yours. My Social Security Disability was approved the first time and only took 1 1/2 months. I am not recommending anyone try this on their own. Most should not even start the process (at all) until you have talked to a disability lawyer. However, our experiences were unusual, and I believe there is something to be learned from them. I believe the key is to get your doctor(s) to take the time to do their reports correctly including your scleroderma diagnosis. This is very important because sceloroderma is on the Social Security Disability List of diseases that are presumed to be disabling, so the process for approval is faster (the handbook that is used to approve claims is on their website at http://www.socialsecurity.gov/pubs/10029.html). Also, make sure to provide them copies of your medical records. I bought a book written by a lawyer that explained what information was required and even provided forms. After gathering the required information I applied on line at http://s044a90.ssa.gov/apps6z/ISBA/main.html I had one in person interview. I received my approval a month and a half later. I believe that my approval was fast because I applied on-line, provided all the necessary information, and because scleroderma/systemic sclerosis is on the "List of Impairments that describes medical conditions that are considered so severe that they automatically mean that you are disabled as defined by law". Hope this helps others who needs to apply.
  3. Puva Therapy

    Hi Dave, I have been receiving PUVA treatments on my hands and feet for the past two to three years. I went twice a week at first, and now go once a week. The PUVA treatments seem to have helped stop the puffiness and skin tightening, and then slowly improved them. It also seems to help with my Raynaud's. The improvements were slow, but I noticed a difference within a few weeks of stopping treatments. I had to start again. Best wishes, Ron
  4. Sclerodactyly

    Hi Patty, I have been receiving PUVA treatments on my hands and feet for the past two to three years. I went twice a week at first, and now go once a week. The PUVA treatments seem to have helped stop the puffiness and skin tightening, and then slowly improved them. It also seems to help with my Raynaud's. The improvements were slow, but I noticed a difference within a few weeks of stopping treatments. I had to start again. Best wishes,
  5. Your Recommendations On

    Hi VEGAN, You may want to take a look at this previous discussion on Social Security Disability: http://www.sclero.org/forums/index.php?showtopic=246&hl= Best wishes,
  6. Update - Good News For A Change

    Great news Janey. My thoughts are with you. Best wishes,
  7. Suddenly Without Health Insurance

    Hi barefut, Please read your letter carefully. According to the Department of Labor: "What process must individuals follow to elect COBRA continuation coverage? Employers must notify plan administrators of a qualifying event within 30 days after an employee's death, termination, reduced hours of employment or entitlement to Medicare. A qualified beneficiary must notify the plan administrator of a qualifying event within 60 days after divorce or legal separation or a child's ceasing to be covered as a dependent under plan rules. Plan participants and beneficiaries generally must be sent an election notice not later than 14 days after the plan administrator receives notice that a qualifying event has occurred. The individual then has 60 days to decide whether to elect COBRA continuation coverage. The person has 45 days after electing coverage to pay the initial premium. " You can get more info on COBRA at the U.S. Department of Labor website: http://www.dol.gov/dol/topic/health-plans/cobra.htm Best wishes.
  8. Bruising On My Back

    Hi Patty, I have also experienced increased muscle pain when reducing my prednisone level. From what I have read it is not uncommon, especially when the level is reduced too quickly. Going from 10mg to 7.5mg in one step seems like a lot to me. My doctors usually take it much slower under 10mg. Best wishes.
  9. Dermatologists

    Hi,Barefut I see a Dermatologist every three to four months. I have been receiving PUVA treatments on my hands and feet for the past two to three years. I went twice a week at first, and now go once a week. The PUVA treatments seem to have helped stop the puffiness and skin tightening, and then slowly improved them. It also seems to help with my Raynaud's. The improvements were slow, but I noticed a difference within a few weeks of stopping treatments. I had to start again. Best wishes,
  10. What Is Myositis?

    Hi Beverly, I have Mixed Connective Tissue Disease (Scleroderma and Dermatomyositis). The muscle pain and fatigue are some of the most common symptoms that I experience. I have them after very little effort or exertion, and whenever my CPK level is high. I also experience muscle weakness and lost. I have the kinds of rashes that are common in dermatomyositis (DM), including around eyes and on eyelids, but most of them do not itch. I do know that many with DM report rashes that itch like crazy. It is only recently that I have had a rash on my trunk that does itch. Best wishes,
  11. Weird Trembling

    Hi Celia, I also experience the kind of trembling you described along with heart palpitations and a rapid pulse (as high as 147). I believe that my symptoms are associated with atrial fibrillation. I recently began having problems again with atrial fibrillations and atrial flutter after three years. My cardiologist is trying the meds that worked for me before. Your doctors may want to do an EKG to rule out atrial fibrillation in your case. Best wishes,
  12. Cardiac Ablation And Meds Decision

    Hi Janey, I am sorry that you are having problems with intermittent atrial fibrillations, and atrial flutter that can't be controlled by meds or the pacemaker. I hope that the cardiac ablation works well and is a permanent fix. Let your doctor know that we are all holding him to his promise of an improved quality of life. I recently began having problems again with atrial fibrillations and atrial flutter after three years. My cardiologist is trying the meds that worked for me before. Best wishes,
  13. Sunbeds

    Hi Megan, I have been receiving PUVA treatments on my hands and feet for the past two to three years. I went twice a week at first, and now go once a week. The PUVA treatments seem to have helped stop the puffiness and skin tightening, and then slowly improved them. It also seems to help with my Raynaud's. The improvements were slow, but I noticed a difference within a few weeks of stopping treatments. I had to start again. Best wishes,
  14. Pigment Loss

    Hi ltulip, I am an African American man. I also have lots of pigment loss in my skin in some areas, and hyper pigmentation in others. Best wishes,
  15. Hi Nancy, I am so sorry that you have had to deal with so much. I have MCTD, and my doctors had me starting to believe that I was depressed or crazy until my anti RNP came back positive. I have never had a positive ANA. I was wondering if your doctors have run any other test like anti-RNP? Best wishes,
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