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Appointment with rheumatologist

Discussion in 'Women's Alopecia Universalis & Totalis' started by dancer, Oct 23, 2012.

  1. dancer

    dancer Experienced Member

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    Well I am pleased to say that he has ruled out some of the more serious autoimmune diseases, to my relief. However he is concerned with some other issues.
    I have the first signs of arthritis partically in my hands and feet but how quickly and if it will progress he cannot say
    Although my flexability and strenghth are good he was concerned when I said my flexability was at least 30% less over the last couple of years even though I concentrate on this area


    Bottom line! From what I told him he belives the muscle pain and lack of flexability is caused by the menapuse and lack of hormones.He also thought that could be having an effect on the tendinosis taking so long to heal. Obviously I donot want to go back to HRT as that just flares up the endo, last time it took 3 months for the pain to subside from stopping the tablets.

    For the joint pain he suggested I tried glucosamine for a couple of months as it helps some people, he said it can work like ibuprofen without the side effects. At this moment in time he feels it is too early to use autoimmune suppressents/steroids and I agreed it is not want I really want until it is really nesessary. He thought tweeking my diet might help it was something I would have to try and to continue with gentle exercise.

    And then came the bombshell. I said I thought you were going to tell my give up my teaching, he replied with a very serious look only you can make that decision but it needs to be considered.

    So here I am this afternoon with my brain fighting my heart. I know that after teaching the pain and exhaustion is worse and that is affecting my qulity of life. But I have dedicated my life to Ballet and Dance and when I was younger overcome some serious injuries,.It is my livelihood and I already have had to give up my Sports Therapy due to pain in my hands, I have no other qualifications in any other area... yep my eggs are all in one basket! So whist it is sensible to give up for me its not that simple :(

    So after much deliberation I have decided that I will give this about 12 months to go either way. I will try to research and help to alieviate my symptoms and in the meantime consider what I will do for a career if this does not work out.
    I have decided to add Black strap molases to my diet

    So if anyone has any suggestions to help my symptons or steer me in the right direction for research. please please reply!

    Thank you ladies
    Sara :(

    Oh forgot my potassium levels were just over normal levels by one, he said not really a concern but is retesting them, also doing vit D levels. All other bloods normal
     
  2. Joann

    Joann Moderator

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    Dancer, :grouphug: I'm also pleased the rehematologist could rule out any another autoimmune diseases. That's a big relief. News about the arthritis is not good.:thumbsdown: I have arthritis in my hands as well.

    I made a choice not to do any HRT. There are so many conflicting reports that all I do right now is supplement with calcium and Vit D 3 according to my family doctor's dosing suggestion. I get bone scans done every 2 years and the last one was showing some bone density loss. My doctor said I will be better able to avoid taking the more potent meds for osteoporosis which can happen in menopause because of the lack of hormones. You could talk to your family doctor about those supplements for yourself.

    I understand your dilemma about giving up teaching dance and ballet. When you love what you do it would be hard to give it up. I was at exactly where you are now about 2 years ago now. I want back to work part time for the public library system. I have aways loved to read even when I was a young child. I choose reading over TV anytime. Suprisingly the job can be very physical too. Lots of bending, stetching & repetitive motions. I developed problems with my shoulder. My branch shut done for renovations and I thought to get my shoulder in tip top shape. My doctor sent me for physical therapy but I was told by the rheumatologist that the physiotherapist went at it too intensely for a person who has Sjogroens. It needed to be more gentle. My shoulder actually got worse. The rhematologist put me on anti -inflammatory meds to calm things down which they did.

    However it was then time to go back to work. The renovation was completed. I had to make a decision about my job. The rheumatolgist told me that if I went back to work the shoulder pain could become chronic. The money was peanuts but I loved the atmosphere and interaction with people. With a really heavy heart I decided to leave the job. I still miss it. However, my shoulder is really good now. I can put my arm behind my back and even sleep on it which I couldn't before. I used to come home from work and have a 1-2 hour nap . I don't have to do that anymore. I still miss the job at the library but my arm is so, so much better . I'm much older than you so your decision is a much harder one. I feel giving yourself a year to see what happens while researching your options or treatments that will help is a good one.

    There is a product available in Canada and the U.S. called Sierra Sil. I have not used it myself so I can't vouch for it. If you would like to give it a try just let me know okay?

    http://www.sierrasil.com

    Hugs,
    Joann
     
  3. dancer

    dancer Experienced Member

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    Thanks yes I will look into that.

    I know these decisions are hard, I also feel for my husband who has been a rock during the last five years. I have to also consider him I know. If the exhaution does not subside I will give up because I no longer have energy to enjoy the little time we have together and thats the point, finding a balance between health, work, money and fun.

    Yes I think I should have a scan for bone density. During my problems with my endo I was given a drug which reduces bone density, my Nan also had oesteoparosis.

    Thanks again :)
     
  4. dancer

    dancer Experienced Member

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    Hi Joann
    I found the sierrasil online but at the moment its out of stock :( Thought I would give it a try, however as I know there are many readers here who dont post so I thought I would add I found an article to say you need to be sure you consume your daily fluid levels as it can dehydrate you. Seems to be some good reviews on it.

    I also started my diet this week cutting out wheat dairy red meat and sugar. I have added in foods to promote estogen and things that might help the arthritis. Been a challenging week with cooking but with a bit of creativity got a good balanced diet going. I do miss my coffee sooooooo much, herbal tea just isnt the same! However I have to say although the pain is still there I am feeling so much better in myself, more energy and had three days with only mild hot flushes during the day and none at night.....BLISS! All my excema has cleared up too for the moment, I always keep an open mind so only time will tell if this will help or not! BTW someone told me rosehip has helped her halve her dosage of painkillers she has really bad arthritis, so its on the shopping list!

    I bumped into my Dr in town and he kindly crossed the road to ask how I was and if I had been to specialist. Any way he thinks it might be worth trying the lowest dose HRT patch because it is a continuous dosage and smaller compared to tablets it may not flare up the endo. He is also concerned about my bone density as I was given a drug when I had endo that increases the loss of bone. I am a litle dubious about taking HRT but I will go and see him with my list of questions, yes I am very dizzy and forget to ask the most important things. I am fortunate to have a caring Dr he always asks me how the alopecia is and if I had any new research to share!

    Thanks for info!

    Sara x
     
  5. Joann

    Joann Moderator

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    Hi Sara,

    Too bad the sierrasil was out of stock. Thanks for letting us know about consuming more fluid to keep oneself well hydrated while taking it. If you do start to take it I would be interested in what you think about it.

    I could do without the red meat but the dairy, wheat, sugar would be soooooo hard. If the result is feeling so much better, more energy, eczema clearing up it will be totally worth it for you.

    It's great that you have a kind and caring doctor. It really helps when they take the time and patience to answer all your concerns and questions patiently. My immunologist is good like that . It helps to have confidence in your doctors.

    Keep me updated on everything okay?

    Hugs,
    Joann
     
  6. dancer

    dancer Experienced Member

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