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kris52770

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Posts posted by kris52770


  1. Hi everyone,

     

    It's been a while...I checked out to fight the good fight that we all seem to know so well.

    I have kicked screamed and thrown fits :temper-tantrum: finally I am in with the sclero specialist. :emoticons-line-dance: My appointment is September 8th. I am not sure what is going to happen but at least I will know if I ever have this. Hopefully either way I may get some answers finally...11 months and counting with no definite answers just lots of symptoms and a positive skin biopsy. I will keep you posted and even though I do not post often. I think of you guys everyday.

     

    Wishing you all the best,

     

    :emoticons-group-hug:

    Christine


  2. Hi Snowbird,

     

    Finally something I can pipe in about living in sclero limbo. But what they are sure of is that I do have morphea/linear sclero confirmed by skin biopsy. It started on my upper back and boy did it itch for months. In my case I noticed and the regular doctors kept blowing it off. When I started noticing skin changes on my neck and face I went to a dermatologist myself. This guy was great, took one look and took a biopsy. I can tell you that it has not gone away and it spreading slowly. I do believe that it is affecting the muscles.

     

    Morphea, at least to me, feels like the skin being eaten from the inside and your skin randomly hurts throughout the day. You start to see depressed areas. In a way I have been fortunate that I can still easily cover them with make-up and hopefully that is the way it will stay. There is definite muscle weakness and I am using physical therapy to work on that till I get in with the sclero specialists.

     

    Hope that helps a little.

     

    All the best,

     

    Christine


  3. A big Hello to everyone and hope everyone is holding their own.

     

    Finally got to my doctor and the referrral to Boston to see the specialist (believe me I had to fight for it) and am now waiting for the appointment. This is such a long and frustrating process...sigh. They put me on Plaquenil and after a couple of months I started getting really sick and actually feel worse on it. I was wondering, has anyone else had side effects from this drug? Thanks in advance for the input :)

     

    Big Soft Gentle Hugs,

     

    Christine


  4. Hello everyone,

     

    First I feel I must apologize for flaking out the last couple of weeks and not being as supportive as I should be. I just needed to mentally check out for a while after the last rheumatologist appointment.

     

    So here it goes..I went to see her on May 5th and she asked where I am at. I told her that it feels like the muscles and skin hurt all the time. She stated that all the tests for heart,kidney and lungs came back ok. My scl-70 came back negative but the skin biopsy came back postive for morphea. She stated that she feels it is only skin related but she can't be sure. I told her that on top of the skin and muscle my feet hurt terribly and with my job on my feet all the time this was not helping. My job is not flexible and I try to stay off my feet as much as possible. I have more skin involvement than I did a couple of months ago including some very painful spots on my back with are all rough now. My hands are different degrees of red all the time but I never see the blue and white that you guys speak of. Hurts to type not and they are tight. I have what they call pale white plaques that are slightly indented. Also I noticed that my mouth is sore to open. They are waiting until June 9th when I have a second skin biopsy to see the results before setting me up with the specialist.

     

    I guess my question is does anyone else have the feeling like the muscle and skin are being eaten from the inside out? The rheumatologist looked at me like I was crazy when I told her this. However I did hear the dermatologist state to his assistant that there was muscle atrophy on my back in the same exact spot that has been so painful for me. Am I crazy? Hopefully someone can give some insight on this...again thanks for all the support from you guys. Hope everyone is doing well and you are in my thoughts...

     

    All the best Christine


  5. Welcome back, So sorry you are having these issues. I can totally relate I have swelling in both legs and my feet are very waxy as well. I also have to do alot of walking and standing during my 9 hours shifts at work. One of my biggest complaints is the stinging in my feet. Some days they hurt so bad I can barely walk at the end of the day. My rheumatologist told me that she doesn't feel it is related at all. I do not believe her to be correct. She is sending me off to yet another doctor...boy this gets old quick. Hope you get some much needed relief and we are all glad you are back :emoticons-line-dance: All the best Christine


  6. Hi Craig,

     

    Well that was kinda depressing but very true. Sadly for me my employer only offers short term disability and no long term. So I am covered for six months and that is it. I have tried a few companies and believe me the rates are very high IF you get approved. In your case I am glad you have found a reasonable solution.

     

    Chopper, I didn't ever think of this either until my rheumatologist told me to try to secure this now but I believe I am in too far at this point. You are so right about them wanting the customer until you use them. All I can say is that my fear of doctors kept me away for many years that I still had to pay for and now in the last six months it is catching up with them. Really wished I had thought of long term in my twenties and no at 40 never thought I would be dealing with this stuff so young. Just trying to make sure my nine year old will be all set as well just in case. I have a whole different way of looking at things now. All the best.

     

    Christine


  7. Hi Jo,

     

    Thanks for the response.We have SS disability as well. I was trying to think ahead with a private insurance to supplement that. I think we all worry about the what is going to happen in the future. As of right now I am still able to work full time but my job requires me to be on my feet most of the day. I thought I had a shot with no organ involvement as of yet ( fingers crossed) but the arthritis of the legs and feet is what has me thinking about this.

    Hope you are well. Christine


  8. Well as the story goes, I tried to apply for long term disability as the doctor told me I should before they put the firm diagnosis in the records. What a surprise, denied by three private companies already based on the amount of testing and a very very lengthy medical records over the last six months. Anyone had any luck in this area or is it just too late?

     

    Hope everyone is holding their own.

     

    All the best,

     

    Christine


  9. Hi Marsha, A hearty welcome from the East Coast..As I am learning very quickly we all are very different as far as symptoms go. Everyone path seems slightly different and what affects one may not affect another. I am still on my path to getting answers as well. I can tell you that I have a lot of issues with skin changes, tissue and muscle changes. They have a wonderful scleroderma clinic in Boston with specialists.( a little bit of a trip for you but probably well worth it)Try to take everyday as it comes. I too felt like no one understood what I am dealing with both physically and mentally,alone. However you have friends here that completely understand.. :emoticons-group-hug: Christine


  10. Hello.

     

    Sorry that you are dealing with this. I can tell you that I have been doing PT for several weeks now for the same thing on the left side. Shoulder and the elbow and back with no injury to speak of. I have a lot of skin involvement with tissue inflammation and muscle weakness. My elbow hurts to even rest it on the table. PT helps some but I have to believe somehow this is related. Have 3 herniated discs which was very surprising to me. My pain feels more muscle tendon related. Hope that PT brings some relief.

     

    All the best.

     

    Christine


  11. Good Evening,

    I was wondering if anyone else has skin involvement. I have swelling in both legs but I also have the sensation of throbbing in my skin and muscles. This is pretty constant. Sometime it feels like it is all the way to the bone... Ouch....My feet ache terribly. Does anyone else have this much skin involvment?

     

    Christine


  12. Hi Everyone,

     

    As promised I am back to update. So today at work the local hospital called and told me they were doing the registering for my appointment on Thursday. My response was great...lol...What am I having done? They called before the doctor's office called me. So I guess they are moving forward with the heart testing, which will be this week. When the doctor did call I inquired about this and she stated that they wanted to continue the baseline testing. She also stated that she had been talking with the specialists and they told her that even though the blood tests were negative that did NOT rule it out. The heart testing is next and then on May 5th we will discuss the results and make a plan to get me in with the specialists. I informed her that although I was ok with staying with her I did want to go to the specialists as well. My comfort level would be higher with both working on this together regardless of whether it is only in the skin, muscles and tissues or more. I was very direct about that. I guess we are going in the right direction. I do realize that this is a slow process at best.

     

    One more side note..it seems that my pulmonary tests showed mild obstruction :emoticon-dont-know:

    Guess we will talk more about that later..

     

    Thanks for all the supports...All the best :emoticons-group-hug: Christine


  13. Thanks everyone for the input. I really have to say that although not happy with these recent issues overall I do like the Rheumatoligist. I did find her easy to talk to and she did spend a lot of time with me in my first few appointments as well as pushing the tests for lungs quickly. I am hoping that she will stay true to her word and refer me to the specialists in Boston. I do believe that they need to be the ones to determine this. After I left that message I realized that Monday is a holiday so I guess I will wait for Tuesday. One thing I have learned is that nothing happens very quickly and I stopped worrying about what might be said. Nothing changes the outcome so I decided to enjoy the weekend. I hope everyone is doing the same. No point in :emoticon-bang-head: Life is to short.

    All the best Christine


  14. Hi Craig, Some of the other symptoms are red swollen hands and feet. Severe muscle pain. There is swelling all over my body which they have not fiqured out which is why they did the biopsy. I have Raynaud's is both legs and hands and problems with swallowing as well as stomach issues. Oh yes to complete the mess lol severe dry mouth and tight shiny skin on hands and feet. Guess it is a wait and see. Christine


  15. Hi Everyone, Hope all is well with everyone. So Finally after a couple of weeks. I finally got an answer from the rheumatologist. I called her and asked her if the results were in from my bloodwork. She states I mailed them to you. I never received them. She tells me that the ANA results were normal so that I do not have diffuse or limited scleroderma. I was confused by this as she had told me that the blood tests were the only way to tell. I know that some of you had said that you can still have it without a positive blood test. I mentioned this to her and the skin biopsy was postive. She stated that the skin biopsy meant morphea not the other form. I then questioned her about the kidney testing and the lung testing results. She informed me that she did not have the results but since she hadn't heard anything she assumes they are fine. That was last Friday. I was not feeling overly comfortable with these answers. I really like her but kinda feel like I was being brushed off. So out of the blue today I come home from work and there is an urgent message to call the office that she needs to speak with me. Of course I call back and they are gone for the weekend. I am not having a good feeling right now. Does anyone else have a negative blood test? Thanks for listening no one else understand the anxiety of not knowing where all the pain is coming from..... :emoticon-dont-know:

    All the best, Christine


  16. Hi, I am dealing with the same exact thing. I am 40 and for the last year I have been all over the place. First it was every 2 weeks and then I started skipping months which I have never done. I was always every 28 days with about a 5-6 day cycle. after skipping I would only get it for 2 days and then it would disappear and it was extremely light. I also thought it was because of everything else going on with my body. I have an appointment with my primary and she can run blood tests to see if this is the case. Glad you brought this up, I wanted to but was embarrassed. However if is early menopause then I will do the dance. :emoticons-line-dance:

    Best wishes, Christine


  17. Hi Everyone,

     

    Just wondering if anyone else had noticed weight gain. I am wondering how on earth I can keep gaining weight when clearly I am eating much less than I used to. The only meds I am on right now is for nerve pain due to 3 herinated discs in my back. Yet I seem to keep gaining. Anyone have any insight on this?

     

    Thanks for listening.... Christine :emoticon-dont-know:


  18. Hi Chopper,

    Welcome!!!! Like you I am new. I have found this website and the wonderful people here a lifeline.

    Hopefully you will find it to be a great help as well. I found out very quickly that it seems if you have a question or concern many people have already experienced it. The medical is very helpful as well. Look froward to hearing from you. All the best..Christine

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