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Carol Lee

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Everything posted by Carol Lee

  1. Carol Lee

    Hurrah, my thyroid is wonky!

    Hi Teatime, Be sure to check what your TSH is. The recommended level is below 3.0 but unfortunately many doctors do not know this and the lab does not put this recommended value. It makes a huge difference for some people to keep their TSH at this range. Carol
  2. Carol Lee

    Scleroderma Systemic

    Hi Lynda, This year I developed coughing with eating and drinking. My internist ordered a swallow study at the local hospital with the speech therapist. When you have this study they will have you swallow liquids and solids while doing xray of the throat. This test is very easy to do and shows clearly your swallowing problem. My problem is everything I swallow is refluxing from the upper esophageal sphincter back into my throat and I have developed a pouch in my throat. There are quite a number of different problems that could be causing you symptoms that will show up on this study. There may be swallowing exercises that the speech therapist can give you to help your problem. In my opinion is not acceptable to just say it caused by sclero and not treat it if possible. Choking with eating can cause aspiration so it does need to be investigated in my opinion. Best Wishes, Carol Lee
  3. Carol Lee

    Synthroid with Esophageal Dysmotility

    Hi Cheryle, I had been taking Synthroid for years when it seemed to stop working I had all the same symptoms I had before I went on it. I also wondered if it was not getting down properly since most pills don't with me. What I did is chew up the pill, I set the alarm for 4am and then took the pill chewing it up, it dissolves quickly that way. This worked for me and now I just have it by my bed and take it first thing when I wake up and chew it up. I hope this helps. But if you try this I would start by chewing only a portion of the dose as there could be a possibility of getting too much. Of course I am not a doctor so I am just giving you my own thoughts, so you may want to check with the doctor. Carol Lee
  4. Carol Lee

    Linear Morphea/Coup de Sabre

    Hi Amanda, What is so surprising is that this doctor is a scleroderma expert and has been working with scleroderma patients for 30 years! So now I have 2 different opinions, both doctors experts. The sclero expert said that extra collagen seen in biopsy can be caused by other things, such as trauma. So even with biopsy he didn't think the lymphedema was caused by scleroderma. Well the lymphyedema in my leg appeared without a trauma, he did not say any other reasons for the extra collagen. This doctor also said that scleroderma is not systemic unless you have it in your hands, heart or lungs. He was very nice but not really helpful. When I saw him I was tired, it was 2hr drive and so surprised at what he said that I did not question why he said that the linear sclero was not progressing when he had not seen it before. He ask if I had seen the dermatologist so maybe he is saying he does't treat linear scleroderma. So I just have no answers for my problems. But my understanding is there is really no proven treatment for linear scleroderma and if even having surgery to remove it didn't work, I am not optimistic that it can be stopped. I was just hoping to get good some information from this doctor, but that didn't happen. Carol Lee
  5. Carol Lee

    Linear Morphea/Coup de Sabre

    Hi Celzsing, I have linear scleroderma on my scalp. It started when I was about 17, I am now 57 so I have had it 40 years! It started as a small area on the top of head was red inflamed and sensitive, with hair loss. The dermatologist then just told me to not to pick at it, but I was not picking at it. The area grew to about 2 1/2 inches long on the center top on my scalp. When I was 29 my right ankle became swollen for no apparent reason. Over the next few years the swelling in my ankle spread to my entire leg from my toes to my groin, was diagnosed as lymphedema, but could find no cause. I found a great dermatologist when I was 30. He had me go to plastic surgeon to have the area on my scalp removed. After the surgery the area healed well and looked great, but then 6 months later I started to loose hair in the area and it came back the same exact area as before! He treated it with cortisone cream but it did not have any effect. This doctor was connected with the university and a teaching doctor, he found a great surgeon for my leg that did surgery that help relieve the lymphedema. My dermatologist also liked to bring in students to look at me. This was happening when there was no computer and so I could not get very much info on scleoderma. My dermatologist said the swelling of my leg was caused by scleroderma. Over the years the area on my scalp has slowly progressed to 4" and the bald area are not so easily covered by the remaining hair. My dermatologist has been retired so I saw a local dermatologist several years ago. This dermatologist said he has been in practice for 30 years and had never seen linear scleroderma before, he took a photo of it and gave me dovonix. The dovonix irritated the area so I couldn't use it. The area continues to slowly progress. I thought it would be great to see scleroderma specialist since I also have upper gasto intestinal problems, hypothyroid and chronic fatigue. When I went to specialist he did not offer any kind of help. When I told him the area on my scalp is progressing he said no it is not. That just floored me. He also said that he didn't think the lymphedema in my leg was caused by scleroderma and that biopsy can not diagnose scleroderma! Frustration after all these years and no answers. So now I don't know if there is any treatment that can stop the progression, probably not, but it would be great to be able to find some treatment for it. Carol Lee
  6. Carol Lee

    Localized Scleroderma questions

    I have had linear scleroderma and systemic sclero diagnosed 1985. I am now 56. I have linear sclero on my scalp on the top of my head. This started when I was about 18 but was not diagnosed until I was in my 30s. I had been to 2 dermatologists that could not diagnosis. When in my 30s I started severe swelling of my rt leg also fatique and weight loss and nausea. Local doctors in my area could not help me so went to UCLA former head of the dermatology and he diagnosed both linear and systemic scleroderma. He was very helpful wonderful doctor. He sent me to a surgeon that did surgery to relieve the severe swelling of my leg. At that time there was no internet and it was impossible to get much information on scleroderma. I changed my lifestyle, working less and planning for less stress in my life. My health remained stable until I was 48 then started on prevacid for reflux and syntroid for hypothyroid. When I was in my 40s the linear sclero was not active and I even grew back hair that I had lost. But when I turned 50 the area became active again and remains active and slowly progressing. I believe that you should find an expert doctor in scleroderma to help you. Scleroderma is rare and most doctors know next to nothing about it and will not be helpful. I hope you can find a good doctor to help you. Carol
  7. Carol Lee

    Time to celebrate

    Razz, Congratulations on completing and publishing your book! I have ordered it and looking forward to reading it. It is so helpful to others to share what you have experienced. Thank you so much for sharing. Carol lee
  8. Carol Lee

    My Story

    Gina, I hope you will get the help you need. I understand your fear that the Doctor will disregard your symptoms. When I go into the doctor now I take my husband with me and it gives me more courage to stand up for myself. It is hard for me because I wait to go until I feel so rotten I can not think straight and express myself well. I hope you can do something to relive some of the stress on yourself, and to get yourself the the help you need, you have a large family that needs you to be well. You also might be helped to see a dermatologist to look at the sore on you toe. Take care of yourself, Carol lee Jefa, I will not go back to that GI doctor. I did have a great GI doctor 8 years ago when I had esophagitis and gastritis I started on prevacid then. But now with my HMO I can not go back to him. But I will find another one that I like. Thanks so much for the welcome, Carol lee
  9. Carol Lee

    My Story

    Gina, I would like to tell you my experience. I was diagnosed 25 years ago by biopsy and tissue samples evaluated by experts that I have scleroderma. My symptoms have been mild over the years, I have edema rt leg, severe reflux and fatique are main problems. I have found over the years when I go to the doctors they completely ignore the scleroderma. My feeling is that they just have such a poor understanding of the disease they do not know how to deal with it. Now I have a good general practitioner that listens to me, but recently when I went to new GI doctor that was very rude to me and said to me after I told him about the scleroderma he said almost shouting "You had scleoderma, but you dont have scleroderma now" when I tried to explain to him about it he cut me off repeating "You had scleroderma but you dont have scleroderma now". Again I tried to explain to him and again he cut me off saying, "Well you face doesn't look like it". Of coarse I was in shock at this point. This is why I have tried to avoid doctors over the years, they just dont understand the disease. I was so sick when I went to this doctor, I had lost 10 lbs and was only able to take liquid diet due to the pain, and he treats me this way. I found this forum then and read every post on reflux and got myself straighten out and can now eat well, I asked my general practitioner for reglan and that with prevacid solu tabs are working well. My point is I think it is important to go to doctors that have an understanding of the disease. Carol lee
  10. Carol Lee

    Curled Fingers

    Peggy I feel so bad for you. I am having fears about my mouth as the area has been slowly but surely getting tight, and the whole area around cheeks and mouth have become thick with fibrosis. I find these changes to be very upsetting. My hands have not been having these problems. It must be so hard to lose function and appearance in you hands. Nina I have problem with only my rt leg, it started swelling and developed severe lymphedema from the toes to the groin. This was 1985 when this happened, I had surgery for this. It continues to have mild swelling now. Are you having problem with edema, function and motility? Carol Lee
  11. Carol Lee


    I would agree with you Shelley about having testing done. If the test will not change treatment then then why go thru the discomfort. I find this information on sweating interesting, there does not seem any part or function of the body that can escape sclero. Carol Lee
  12. Carol Lee

    New to the Forum

    Hello Debbie, I too have been lurking about this forum since April when I was having such severe reflux and pain that I could not eat at all, was taking only liquids and ensure. I read all the posts on reflux and have got myself straightened out. We sure do have to count on ourselves because there are very few others that understand this disease. So welcome and I to would like to join this very helpful group also. Carol L