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mollie

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About mollie

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    Texas
  1. Hi Everyone, I'm still looking for a new rheumatologist. I thought I found one but it just didn't work out (so disappointing). If anyone knows of someone in the Dallas/Fort Worth area I would be very grateful. Thank you. Mollie
  2. Thank you for your reply. It is really scary that all of sudden you find yourself without a doctor, especially if you have gone from not being able to walk to having a somewhat better life. He did not give me any recommendations but said that he would support my meds until I found a new doctor. I did find a rheumatologist and my appointment is in August. My rheumatologist who was treating me had a small practice and the new medical requirements (including insurance requirements) apparently are now affecting many doctors and especially those that see Medicare patients even though they have supplemental insurance like we do. Everyone thinks that Medicare is free, however, my husband and I now pay $7000+ for Medicare and Supplemental Insurance. Medicare insurance costs are based on your annual income if you are still working part-time (I'm working part-time but my husband is not working as he is my mother's caregiver...however, he has to pay the same rate for Medicare insurance that I do because we file jointly). Also, as I am on IVIG, our drug costs are pretty expensive until we reach the catastrophic level, which takes about 3-4 months. I am relieved that I have located a doctor, however, I know that this may not be "the one." I have multiple specialists, however, it really is exhausting trying to find a new doctor that will be responsible for your overall care. Sorry for the rambling. Thank you again for listening and your responses. Mollie
  3. Hi Everyone, I have not posted for awhile. I just received the worst news ever today. My rheumatologist is no longer taking Medicare patients and I'm now officially a Medicare patient. I have seen him for over 5 years and he has helped me so much. My actual diagnosis is UCTD with many scleroderma markers. Hoping that you may have suggestions for a rheumatologist with knowledge of scleroderma. Thank you for any assistance. Mollie
  4. Hi Lynnie...so sorry you are having pain. I have been experiencing very similar symptoms except that I also seem to have ankle and tendon involvement as well. Very difficult to walk and don't seem to be getting any relief even though I take pain medication for my back pain on a daily basis. Hoping that you will find relief soon. Best regards, Mollie
  5. Hi...I actually have a weight problem and my endocrinologist is hopeful that increasing my T3 might beneficial in losing some weight. Since I'm on Prednisone , she thinks that if I do need more T3, the combo might be the cause of my weight gain over the past 2 years. It's very frustrating when you really don't eat much but you still gain weight. Just started my new meds so it will be a wait and see for now. Thanks much. Regards...Mollie
  6. Hi Chopper...I actually took thyroid medication for many years prior to being diagnosed with Gastroparesis (I had to have my thyroid gland removed). I was diagnosed with Gastroparesis in 2007 and have pretty much stuck to a liquid diet since then because of bacterial overgrowth and my stomach not emptying correctly. I do take Reglan (I have no other options now as nothing else worked) but try to limited it to 1 per day because of the side effects. I was sick for several years before being being diagnosed with Gastroparesis and pretty sick...since then, I have really limited my diet and seem to manage it pretty well. Also, had another gastro study done and my stomach is still emptying at the same rate as it was in 2007...seems to be stable at the moment. Thanks. Best regards, Mollie
  7. Hi Christine...I have the very same problem. I know that I don't eat many calories during the day (mostly in the form of liquids because of gastroparesis) but have really gained weight over the past couple of years. I am on Prednisone as well and it's very frustrating. I did talk to my endocrinologist last week as I have been concerned about my T3 levels although they seem okay but besides the weight gain over the last couple of years, the reducing of my dosage of my synthroid, I have also lost a lot of my hair. My doctor is now trying to see if lowering my synthroid dosage and adding more T3 in the form of Cytomel will make a difference. I also have been trying to exercise but it has been very difficult (I can do it on good days but not on bad days). Oh well, guess it's just part of the deal. Would also love to hear if anyone else has any magical solutions to the weight gain. Thank you...Mollie
  8. Hi Everyone...saw my neurologist yesterday and he felt that I do not have aseptic meningitis from the IVIG infusions although there are no guarantees. Since I have no symptoms at this time, if he were to do a lumbar puncture, nothing would probably show up. We decided (or actually I have under his care) that the risk is worth the benefits that I feel with the infusion. I'm going to have one more infusion to see if I react the way I did in December (although there were a couple of things different with my infusion last month such as faster flow, colder product) and if so will not continue with the infusions. They are going to treat me like an MS patient as MS patients seem to have a sensitivity to the product. I will be having a 30 minute IV hydration prior to my infusion and then I will be infused at a slower pace to try to eliminate the headaches. I did confirm that there has not been a change in the product, however, changing the product would be an option as well. My rheumatologist found something going on in my neck between my C5 and C6 area and gave me steroid shots when seems to have relieved the headaches. Scheduling the infusion sometime over the next two weeks and will keep you posted. Thank you for listening and your advice. Mollie
  9. Hi Everyone, Well, the pharmacist stopped my infusion this month because of the headaches I had been experiencing since my last infusion. She called my rheumatologist and told him that I should have a lumbar puncture to determine if I have meningitis (a possible side effect from IVIG infusions). My rheumatologist does not believe that I have Meningitis (do not have the classic symptoms) and I of course do not want to have an invasive procedure. I have made an appointment with my neurologist for next Monday and I'm still in a wait pattern for my IVIG infusion and had to have steroid injections last week because of significant joint pain that I have not had since the IVIG infusions started. I do seem to have something going on in my neck again (C5 and C6) and had neck surgery in the past for a ruptured disk and my doctor believes that this could be causing the pain and discomfort in the base of my neck. I still believe that the plasma was given to me cold and faster than normal and that was the cause of my headaches this past month. I'm very frustrated that a pharmacist could stop my infusion if my doctor says it's okay to move forward...how does that happen? I will see my neurologist on Monday and see what he has to say. Somewhat discouraged. Thank you for listening. Mollie
  10. Hi Everyone...just wondering if anyone is having more problems than usual with their hands during the cold weather. My hands are swollen, cuticles are hard and bleed and my cuticles pull away from my nails. Some of my fingernails are deformed (especially my thumbs and index fingers). I use a rose salve on a regular basis (my grandmother used to use it and you can Google rose salve if anyone is interested-been around since the 1880's, small tins and very reasonable) on my cuticles and usually during the year seems to work really great and keeps my cuticles soft and manageable. Not so right now, and wondering if anyone is using a product that they are having good luck with (I've tried so many different hand creams, shea butter, etc.). If so, please send me a PM with the brand name. Also, does anyone have problems with bruising really bad on their hands and arms. If something barely touches or bumps me, I start bleeding under my skin and a bruise that takes weeks to go away (it evens happens with my barrel bracelet that I put on over my fingers and hand). So very frustrating. I know we are not supposed to mention any brands but I would really appreciate any tips on finding something to use during the winter that might work (I also wear gloves when out in the cold weather), so please send me the info by PM. Thank you for listening. Mollie
  11. Thank you all for your responses. I am going to ask my nurse to slow down the infusion next time as my husband and I both thought it went faster than usual. Also, as the nurse comes to my house for the infusion, the supplies arrive 2 days before and I'm really going to watch the brands. This time around my blood pressure seemed to be lower than it has in the past, so will check on that as well. I also have a call into the pharmacy that send my monthly supplies and will ask them if they have sent the same brand every time (that should narrow it a little). I'm also going to load up on the tylenol as you have suggested as I really don't want to go through last month's saga again. Will keep you posted. Again, thank you for your responses and suggestions...I'm very grateful and appreciative. Mollie
  12. Thank you...I very much appreciate everyone's responses. I too, have been accused of selective hearing...made me laugh when I saw your post. Thank you all again...will just keep plugging along. Mollie
  13. Just checking in to see if anyone has experienced ear related problems. On Thanksgiving, my ear drum ruptured almost for no reason. I felt a little pressure on my left side (that's the side I have the most problems with Sjogrens) and my ear started bleeding. Called my ENT doctor and was put on antibiotics as well as antibiotics/steroids for my ear...still under doctor's care and my ear is finally getting back to normal. I have also had hearing loss over the past few years and now have to wear hearing devices (again my left ear has been affected more than my right ear). Just wondering if anyone has experienced similar problems. Thanks much. Mollie
  14. Well, my last infusion did not go as well as the previous ones. I had a very bad headache for over a week and really got scared that I was not going to feel as great as I had during the past couple of months with the infusion. After a not so good week, I started feeling so much better and my level of energy is way up again (that's good) but was disappointed. Going to check on the manufacturer of the infusion drug and ask them to slow down my January infusion. Still very optimistic because my energy level is still better than it has been for several years. Thank you for listening. Mollie
  15. Good Morning, Everyone... Many thanks for your responses...they are actually very helpful. Amanda...my pain is very similar and I also take pain meds and antidepressants for the discomfort as well (which basically just takes the edge off, too). It does seem that during the 3-3 1/2 week period after my IVIG infusion that the pain is not as severe (but not sure if that's just wishful thinking or my imagination). Sometimes I wake up at night and the pain and burning is so very uncomfortable. I'm going to talk to my neuro and rheumatologist again next month but I fear that there isn't really anything that can be done except my just grinning and bearing it. I really do appreciate you listing and letting me vent and this site so much. Thank you all again. -Mollie
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