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hi to everyone…im new here ….ive heard of this and some one i talked to a month ago told me about this site…well on october 2007 i started having weakness and some pain in my body…..and was hospitalized supposely everything was fine but i kept feeling bad until january the pain stoppped i was able to do things again witho0ut weakness and feelin so tired and no pain….but i started having stomach pains and nausea for days at a time….now a week ago march 2008 i start getting the pains and weakness back all over my body and worst now i feel out of breath or something i feel like im short of breath,,,..im scared i have a strong feeling i might have scleroderma but i dont have the diagnosis yet i dont have any hard skin or anything ….but i feel horrible i wanna get on this ap thing?? im in maryland ne one know any doctors who give it by here or washington dc??? oh by the way my names Annie im 25 yrs old i have a four yr old and this whole thing has got me so down i dont want to even think of not being here for him he is my everything and brings me to tears just thinking of not being here for my baby…i dont know what to do right now …advice please??? please help me :crying::(
Hi!
Annie have you made a Dr.s appt. to get a diagnosis? If not, go to the doc and give him a list of ALL of your symptoms.
There could be a simple answer to all that is going on with you. Please do not worry until you have a concrete diagnosis.
Again, there could be a really simple answer to what is going on with you!
Blessings to you
Key
thank u for replying….i was going to a rheumatologist and didnt go back i only went one day in jan and i started feeling good n i didnt go anymore i thought the symptoms were gone ..but, like i said they are back with a vengance….but i will go to him again….
Hi Annie,
Just wanted to second Key's response to you – very sage advice to just wait and see what is going on, though I know it must be hard with a little one and all the confusing symptoms.
Just wondering, but did your doc test you for Lyme and coinfections? You live in Maryland, which is a hotspot for Lyme. Babesia is a coinfection that can cause the kind of air hunger you describe….here's a list of possible symptoms on CanLyme, but there are other good sites you can check out, too:
http://www.canlyme.com/patsymptoms.html
Wishing you all the best and hope you find your answers very soon and they are easily resolved.
Peace, Maz
Annie,
I weep for you and with you. I have two little ones, too, and completely relate to what you are feeling. In addition to the above posts, I'd like to add a couple items I wish I had done right up front when I first started feeling horrible.
#1. If you don't have disability insurance / life insurance and can get it, NOW is the time to apply, BEFORE you receive a diagnosis. I know how awful you feel because your symptoms really mirror some of mine. But this is so important. This takes a bit of time so start tomorrow. Don't tell any insurance agent you are sick and put your best “feeling great” actress on for the times you have to talk to them. I'm biting my nails tonight hoping the “open enrollment – no questions asked” with a 2 year grace period of no request for disability leave is “open” to me right now and that I will be able to work for at least two more years. Of course, my goal is remission, and to work years beyond that! But I am waiting for an underwriter to look at the policy fine print.
#2. Standard blood tests will be run. Be sure to insist that you also get both your D 25 and D 1,25 tested. Someone told me to do this, and I couldn't get my first specialist doctor to do the D 1,25. Months later, I still regret this. It is a valuable piece of the health puzzle. Even if your specialist “doesn't think so.” Refuse any immune suppressant such as predisone until you have these test results. Prednisone makes this test invalid.
#3. The intial Lyme tests may not be conclusive. My first tests showed no bands positive. A second test showed one band positive. I insisted it be checked by IgeneX, a Lyme specific lab. Other folks will share that Lyme docs don't even trust these lab results and treat upon symptoms. I'm still waiting for the IgeneX test results.
I sure hope these symptoms you have are not as serious as you initially fear. The above are those hind-sight is 20/20 experiences I've had in these last months. This board is a great source of support and information!
Blessings and prayers to you!
Michelethank u michele ….this is so fustrating i look at my son everyday and feel like i wanna tell him so much incase i die or something but then i know i have to be positive but im trying to get this diagnosis keep me in ur prayers guys thanks for the support and advices:) i'll keep u guys updated i love this forum 🙂
Michele & Annie:
I know that you are in the thick of it now and having a difficult time with pain and life. But read all you can in the Henry Scammell books and that will help you have confidence that, in time, this treatment will work.
Trust me, I know the fear from the other side, that of having it be your child who is ill and even possibly dying. And I am definitely one who was one of the worst offenders for worry. One day I literally thought I was having a heart attack. I was so stressed, I was having chest pains and difficulty breathing. I rested for a few minutes and did some deep breathing, the symptoms went away, so I am pretty sure it was stress, not a heart condition.
Read the Testimonials section on this website and the stories from the book, that should help a bit with the uncertainty and the wait.
Cheryl
Annie,
I have Systemic Scleroderma and it took the Doc's 5 years to figure out what I had. First they said it was MS and were about to start treating for that when I had to the common sense to say NO this is not MS. They just grabbed a close diagnosis to make me go away/look like they knew what they were doing. It's a long hard road to a final diagnosis. But hang in there and don't ever settle on just anything, follow your gut, think of your baby and fight for what could be your life or at the very least your quality of life. Research, research and then do more and ask a lot of questions, you're worth it. Take care and I wish you a swift diagnosis and hopefully not that of scleroderma. This board no matter what is a great place for support and info.
All the best,
Steph
yes steph its hard im having joint pain all over its driving me crazy and im very weak no skin symptoms or nothing but im going to start this minocycline thing soon i know i will be better :)and most importantly i trust god
and most importantly i trust god
Annie,
You just said a mouthful. There is no doubt in my mind that God led me to the information and the doctors I needed to get the right treatments. He will lead you too.
I am seeing an LLMD/rheumatologist (LLMD = lyme literate medical doctor). She is just outside of DC in Fairfax and she looks for causes to your illness. If you are interested in her, please e-mail me for her name.
Susan
Annie, Scleroderma SINE is Systemic Scleroderma without the skin involvement. I know a lady who has it. There is a section on here to request a list of AP doctors in your area. You will see it in the beginning of the threads. You must get diagnosed, though. I have had systemic scleroderma with skin involvement for 4 years and am almost in remission. If you get the diagnosis followed by the right treatment, you will be able to say the same thing one day.
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