I have just registered and would like to introduce myself.
I am 50 young with 5 full grown children and 11 wonderful, beautiful grandchildren. I am married to a very understanding, over-worked husband.
I have been having unusual symptoms and health issues for several years now.
The first time I had a severe "flare" it was blamed on my b-12 levels. I had gastric bypass about 8 years ago and apparantly b-12 deficiency is a possible complication several years out. Because of the by pass my body does not use what is taken in and uses its storage instead. Now I get monthy injections.
The second time I had a severe "flare" it was blamed on iron deficiency. It took three different doctors and lots of blood work to determine that it is an iron deficiency and not pernicious anemia caused by the b-12 deficiency. By the time it was all figured out my level was 6.83 (dangerously low) and I had to have a transfusion. Now I take large doses of iron. As yet, I don't know why the levels dropped so low and what the long term diagnosis is.
Then I had some teeth develop cavities and break apart almost overnight. I had two removed and then developed an infection. It took the er doctor, my dentist and an oral surgeon to finally determine that I had a tooth infection that literally ate a hole in my jaw bone. I had two partial root canals done and surgery to clean out the infection along with 2 rounds of 2 antibiotics. (this infection did not show up on the dentists x-ray equipment and the er doctor said it was a salivary infection. I now have another broken tooth and still have not gotten the partial root canals finished - terrified to have him open anything up and get another infection).
While all these tooth issues were going on I was in the process of working with an ENT to find out why I constantly have sinus pressure, ear aches and swollen gland issues. He found nothing but a very large thyroid. Had it out and found it to be cancerous (fine needle aspiration did not pick it up) and had radiation therapy to kill remaining cells. I am now on thyroid medication.
I also have lateral and menial meniscus tears in both knees along with arthritis, bursitis and plumbers knee ( fluid pocket on top of the knee cap ). Currently I am getting cortisone shots....Actually need to have surgery to trim the tears and file down the arthritis but trying to put it off as long as possible.
Now, while all this is going on I am constantly at the GP office with all kinds of complaints. Was diagnosed with fibromyalgia and referred to a rheumy. He has been treating me for a few years now and has been really good to me. But, a lot of new symptoms have surfaced and when you add them up to some of the past issues it totals an autoimmune disorder of some sort.
I am thinking Sjogrens. I have dry eyes, had several eye infections, cornea scratch, lots of sinus infections, throat infections, very dry mouth, trouble swallowing, usually choke on liquids more so than solids, and have had many, many, flu- like issues that never actually became the flu (i'm sure many of you know what I mean) and vaginal dryness along with lots of yeast infections (more so in younger years than now). I also feel dehydrated no matter how much I drink or slather on the lotion.
My doctor had ordered some more blood work to see what might be going on. Last time I had them checked was by the neurologist and he spoke in riddles and I learned nothing except that it is not neurological.
My appointment is May 11th. Until then he started me on prednisone which has stopped the nerve zaps and calmed the all over achy muscles. Not sure it is strong enough because knees and fingers still ache and feel swollen.
Thank you to anyone that was interested enough to read my entire post and, I am looking forward to getting to know all of you here on this forum.
Hi Dewing!
I read your entire post and it sounds to me like you have been through the wringer. A lot of us have and you will find that everyone here is very kind and supportive as well as very well informed. I seem to learn something new and helpful every day. Welcome and ask as many questions you can think of, there is a lot of good information here!
Welcome to the forum. It sounds like you have been through the mill. I hope you get some answers on the 11th. Some of us have posted what we are taking in our signature to help the new people start their search for management.
Hi
You are truly blessed with the children and the grandchildren. I am pushing 57 and while I have three daughters....nothing in the way of marriages let alone grand kids..I hope I can hold out another 10-15 years to see that. You do sound like you have been through a lot. I hope you can get diagnosed quickly and on meds so you can feel better. In the short term many of us take 2000 iu of Vit. D. and Fish oil just to help things along.
Welcome and I wish you all the best.
Hi dewing,
Welcome to the boards. yes-- your thinking may be right. Sjogren's is a process to diagnose so hopefully your bloodwork will be helpful in determining. I hope that you receive some help. This place has been a very good resource for me!
Kelly
Hi Dewing,
Welcome to the forum! ;) We're glad you found us here.
Well, as someone else said, you certainly have been through the wringer! This has happened with some of us while trying to figure out how or if everything fits together.
I can't stay for sure, of course, if it is Sjogren's but it seems like you have the "laundry list" of symptoms. I was also diagnosed with Fibro. first when I suddenly began having all kinds of weird things happening, then later came the eye, mouth and joint problems.
Good to know your doctor has ordered blood tests. Please know that many of us (estimated 30-40 %) have nothing show up in blood work to prove or suggest Sjogren's. Mine look to be from a perfectly healthy person with no issues; however I have many symptoms which have become moderate-severe. The important thing is if your doctor will treat the symptoms you have, no matter what the blood tests say. Proper treatment can make your issues much improved. I wish you luck on your search for answers.
Looking forward to hearing more from you. Please ask anything or feel free to pop in and comment. We share with one another, encourage and support each other.
Again, welcome. ;D
Take care,
Melinda
Hi dewing and welcome to Sjogrens World!
I too read your entire post ;) and want you to know that your story sounds very familiar. I'm very glad to hear that you have a Doctor who is doing additional bloodwork testing so you can hopefully get some answers/treatment very soon.
Good luck with your upcoming appt....keep us posted!
Hi Dewing!
Let me also welcome you to the SJS World and family! Please look around the board as you'll find scads of topics and gaggles of information.
Wow, like the others mentioned, you are one tough lady for all that you've gone through! And I'm so glad that you have a doctor that won't just accept status quo.
Look luck with the rheumy and I'll keep my fingers crossed that you'll get an answer soon!
Hang in there and take care of yourself -
Patze
Hi Dewing :)
Wecome to Sjogren's world. :)
I hope you find the answers you are looking for.
Take care - Scottie :)