Hi, I'm New to the Group

[Guest guest]

Hi Everyone,

I'm new to the group, but not new to this disease. First off, I apologize for such a lengthy letter. I've been looking for others to talk with that have sarcoidosis and hopefully this is the place! My name is Diane Aja (aha). I'm 44 years old and live in Flower Mound, TX. I was officially diagnosed with sarcoid in 10/03, but now realize I probably had it as far back as the end of 1997 when hearing loss started. In May of 2000 I was diagnosed with Transverse Myelitis (lesion in my C-spine which they now are saying was the sarcoid. I found a hard lymph node in my neck and had lost 30 pounds over 5 months without trying in September of 2003. I was overweight and can't lose a pound on a diet. They removed the node in 10/03. Before removal, they did CT scans of entire lymph node system. They told me they were 99% sure I had lymphoma. Biopsy proved to be sarcoidosis. I was put on a course of prednisone until 12/03. By 12/03 I had many more tests on other organs and only showed very tiny granulomas in lungs with no problems. The prednisone never helped at all and my lymph nodes are still to this day huge. I continued to be monitored by my regular Dr. during the next year of so and other than a general feeling of tiredness (I'm always slightly anemic and can't tolerate iron), my normal back pain from herniated discs and stuff, I was o.k. Or so I thought. I started getting really nauseous everyday and then 24/7. I couldn't stand it anymore and started losing weight again. My doc decided to have my gallbladder checked and bingo, it needed to come out. It wasn't working anymore. So 11/05 it came out. During surgery they discovered that my liver and spleen were filled with sarc. They actually gave me a color photo of my liver because they had never seen anything like it before. It's really cool! It looks like it has white polka dots all over the outside of it. Whenever I get new docs, they ask to see that photo and some of my latest MRI because they have never seen some of these things before. After the gallbladder came out I felt MUCH better for a little while. They've discovered some kind of nodule on my thyroid. The only way to prove it's sarcoid is to do a biopsy. Not ready for that one yet. If I have trouble there, I will. Not till then. I've been having the most horrific pain attacks just below my breastbone and it radiates from side to side and it just crushes me and makes it hard for me to breath when it happens. The pain is worse than childbirth (and I had twins naturally). We don't know yet what's causing it but it may be neuropathy pain, because we have just found out that the sarcoid is now all over in my vertebra, pelvic bone and most likely the rest of my bones and joints. I've been having neuropathy pain from my knees down to my feet (both sides) for about 3 week now and it's very BAD today. I have nerve damage pain in my right arm and hand from the old lesion that was in my C-spine, so I definitely know nerve pain when I have it. I take Topamax everyday for the old pain. The new must be pretty bad if I can still feel it being while taking Topamax. I am having a bone marrow biopsy from my pelvic bone to make sure that it is 100% sarcoid in my spine and not cancer or something else before they start me on Remicade for the sarc. I am having my heart checked again on the 22nd of this month. I'm almost afraid to do it. I've had so much pain in that general area lately I don't know if I want to know or not. My spleen is enlarging and anemia is getting worse and in the past two days I'm having shooting pain from my spleen area to my left shoulder. If any of you have spleen involvement, you might know that this is NOT good news for me. My protein level just keeps going up which also means there is lots of inflammation activity going on all over. Is there no end to this monster? ha-ha

As of today, here are the places that the sarc monster has taken over in my body (that I know of): lymph nodes, lungs, liver, spleen, salivary glands, vertebra/bones, joints, thyroid (probably), spinal cord, substantial bi-lateral hearing loss. I may have forgotten something since I don't have my list handy! I battle with non-stop fatigue and back pain, and with the added new neuropathy pain of my legs and feet.

I would love to hear from anyone who has this much active involvement that just doesn't seem to want to quit. And is there anyone out there on Remicade and how often do you get an infusion? They are not even going to bother with Methaltrexate (sp?) because they say it just isn't strong enough for my involvement. I have United Health Care PPO insurance and have been told they may not even cover the Remicade since I have Sarc and not arthritis! Can you believe that? When you have insurance it doesn't even pay! If that's the case, I can't even get it then.

Sorry for rambling! I am so thrilled to talk to people like me that I just can't stop typing. It's like a miracle to have found a group who I hope to make friends with. I wish you a good day. I am a lemonade out of lemons kind of person even though it may not sound like it by this letter!

Your new Sarc Friend,

Diane in TX