nan

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Posts posted by nan


  1. Penny,

    I am so sorry for what you are going through... I go to Hopkins, but now my insurance is telliing me they won't cover my visits anymore because Hopkins is out of network. Has anyone ever mentioned Ehlers-Danlos syndrome, the hypermobility made me think of it.

    I have CREST, Sjogren's, GAVE, GERD, and Fibromyalgia. I have digestive isssues, but not as bad as yours. If you can get into Hopkins try to get to see GI doctor- Dr. John Clark- He is awesome!!!!!!!!!!!!!!!

    Take care of yourself,

    Nan


  2. Red,

     

    I too have limited, it sounds like a Raynaud's attack. Have you hands ever done that? I guess maybe you could call the doctor and ask his nurse if you should be seen. If you go to the medical part of this forum there should be info on it. I wear gloves all the time, even in summer to prevent attacks on my hands.

     

    Take care and stay warm!

     

    Nan


  3. Cher,

    I am so sorry you are having so much trouble. I don't think that Plaquenil will help swollen eyelids. I know that if I forget to take it my hands get really swollen and my joints hurt more.

    Take care,

    Nan


  4. Peanut,

    I wasn't feeling so hot this evening so I figured I check out the forums. You have made my day! It is so great to have you back. You have been in my heart as I have read about your struggles. Keep on improving!

    Nan


  5. Wow! You have been through a lot of tests. I was supposed to have the manometry, impedance and 24hour swallow test done at Hopkins, but since it is out of network for my insurance they are refusing to pay. Now I need to wait until May to see a doctor locally. I am not real excited about these tests. How painful was it?

     

    I hope that you get finally get some answers. I have Sjogren's and Scleroderma and they both definitely affect motility.

     

    Take care,

    Nan


  6. Yes, I definitely have fibromyalgia. I have all 18 tenderpoints! I have had all of my doctors locally saying I have it and my rheumatologist at Hopkins says that I definitely have it. I do know that some doctors just say that when they can't think of anything else, but in my case they're correct.

    Nan


  7. I don't know an answer to your question, but I just wanted to let you know that you will love Johns Hopkins. Are you going to the Scleroderma Center? I see Dr. Saleh, rheumatologist at Good Samaritan. Of course, now my insurance is saying they won't cover my visits because it's out of network. Hopkins will get you straight.

    Nan


  8. Sweet,

    I am impressed that you can drink orange juice. It doesn't bother your GERD. I just started Miralax and like it a lot better than 6 citrucel caplets and 2 stool softeners daily and ducolax as needed. I have found that I definitely don't need the whole cap. I did a little less than 1/2 cap last night and was quite successful today. I didn't realize the side effects. I think I might try what Gareth's mom does with Gareth.

    Good Luck!

    Nan


  9. Stef,

     

    I am so sorry that you had to experience that. Get rid of that doctor and find one that will listen to you and take care of you. You are not losing your mind. That doctor is just a real twit!!!!!!!!!!!!!!!! I had a doctor ask me one time why I was on disability retirement and I looked at him and said, "Are you kidding me?" He backed down at that point. There are some wackos out there, but the good news is that there are some excellent ones too. You just need to find the excellent ones.

     

    Take care,

    Nan


  10. Hi,

    I was diagnosed with watermelon stomach at the age of 47. It was discovered when my hemoglobin went down to 6.1. I had two transfusions at that time. When the doctor did the endoscopy I wasn't actively bleeding so he did no treatment. I was put on iron tablets and my hemoglobin went up to 14. I had no bleeds for 2 and 1/2 years. On the second bleed I got two transfusions and had the argon plasma coagulation treatment. I then had another treatment 6 weeks later. That was June, 2007. I am not on iron and I haven't had any more bleeds. I am one of the fortunate ones. I am so sorry that your mother is having so many problems. I do know there is someone on here that has had part of their stomach removed. I think there is someone else on here that tried a new treatment, but I can't remember the name.

    Take care,

    Nan


  11. I had this testing done on my legs last year. I didn't think it was that bad. The needles didn't hurt at all, but the reaction was a weird sensation. Compared to other stuff I have had done this didn't bother me that much. I do know the doctor that did the testing on me said that many people don't tolerate it too well. I was a lucky one. Good luck!

    Nan


  12. Celia,

    I too have major GI problems. I have GAVE, watermelon stomach. I take 6 citrucel caplets daily and 2 stool softeners daily , along with 2 proton inhibitors and up to 16 Gaviscon tablets. I am still constipated and still have bad reflux. I have trouble getting food down also due to Sjogren's. I can't take the medicine you're talking about because of my low blood pressure. I tried half a tablet and I slept for 17 hours! I know what you mean. This GI stuff really wears you out. I am going to a GI doctor at Johns Hopkins on Dec. 31st. I am hoping that he will have some answers. I use TUCKS, because I have wonderful hemmorrhoids too. I know I spelled that wrong.

    Take care,

    Nan