View Full Version : Hello from NH...not quite diagnosed but...

07-22-2006, 02:09 PM
Hello everyone,

I don't think I've felt so relieved to find a group in a long time. Been reading posts for a while today and can relate with soooo much!!! I've been dealing with relapse/remits for 10 yrs. and I think I'm finally finding hope. My symptoms started probably during my last pregnancy, which was horrible to where I ended up hemoraging and giving birth 7 weeks early, and I have never been quite the same since. I've just recently swiched doctor's because I could not shake the "It's in your head" run around I've been getting from my last dr's for so long. The closest I've gotten for what I have has been "maybe MS", and that's only because my grandmother has it, but alot of the MS stuff never quite made sense.

Finally when my curent exacerbation (started when I had a sever "Flu fever" that lasted three weeks, and went back to work after the first week) led me to leave my job that I truly adored, I found a new doctor to take me seriously. He could not believe that nobody did some test that I guess to him was very obvious, and this week has been full of them, urine & blood tests, MRI's, x-rays, and more will be coming as soon as the blood tests come back. He wants to do some testing on my kidneys because of my glands are swollen and I have times of serious mouth pains, dry noses & eyes with occasional blurriness and a spot in one of them, and at times back pains. He said this may be Sjogern's Syndrom (sp?), and can be serious if not looked into immediately...never heard of this before....but after looking it up on the net, holy cow, no wonder this is his priority....that's my kidney's when my back hurts :shock: ! He also told me to forget about MS and to help me finally feel a little more empowered to look up Lupus, It's not sure until the tests are back, but he was asking questions about things I never even considered to be related...

Feeling worse before and during my periods, which are VERY heavy (my last dr's thought this was bad PMS in which I was prescribed birth control to control only ending up bleeding for 6 weeks straight ending with severe enemia). My knee that was diagnosed as bricitis, was actually a deteriorating knee muscle that is leaving my knee hanging in the breeze and VERY painful. That the fevers I feel may not be the flu (even though my last dr's thought I had the flu quite a bit). The migraines and severe fatigue I feel may not be "just stress". And thinking the achiness, weakness, pins and needles, dizziness and everything else Really Does get worse when I ignore it and "just work through it"...like I;ve been told in the past :roll: .

So I might or might not have Lupus, but I tell yeah, I feel so normal right now reading about it, almost stupid for not finding better Dr's sooner and learning from you all, after feeling like such a hypochondriac from Mars, even in the MS groups. I have more hope than I have had in a long time!

Thank you all for being here and I hope I didn't ramble on too much, just feeling a tiny bit of empowerment right now :D

07-23-2006, 06:23 PM
Hi! I could literally FEEL the relief in your post!! That was amazing! I am glad you have found a doctor that is taking your symptoms seriously! I too am waiting on a diagnosis (My appt is in 3 days!!) after three years of persistant symptoms (achiness, fever, EXTREME FATIGUE, sun sensitivity, pins & needles, sore joints, etc) but, honestly, I have had these types of symptoms for as long as I can remember. I just thought I was a person who didn't have alot of energy. I envied those people who could get up early, be chipper at school/work all day, go to the gym, go home to cook supper then go out for the evening! That was NEVER me! Not even close! :D
Speaking of periods, my pain was so bad that me ob suggested a hysterectomy, which I did in Feb 2003 (at only 33 years old). I almost bled to death that day, only to find out my pain was not caused from scar tissue...it was phantom pain! :P HA! It's all making sense now!
You are right...I have not felt like I belonged more than with this group here. I don't find joy in other peoples sufferings, but I find comfort in knowing that I am not crazy and that I am not alone!
Good luck to you and God bless!!

07-24-2006, 03:45 AM
Hi Jelly and Mommy;
First to Jelly, let me take this time to welcome you to our forum and to our family. Many of us have been where you are..relieved to have a diagnosis of Lupus just so that we can finally know that we are not crazy, we are not hypochondriacs and that IT IS NOT ALL IN OUR HEADS!!
You are very lucky to have found a doctor who takes you and your symptoms seriously. For many of us, that does not happen so quickly. This is especially good news for you because it also means that you have found a doctor who will begin treatment for the overall disease (lupus) and its many symptoms so that you can get some relief.

To Mommy3 - I am happy that you are able to find comfort and support here. That is why we are here. Thank you for providing both to others in this forum.

I want both of you to know that you are not alone and that everyone here is supportive, understanding, comforting and informative. I am glad you both are here and I hope that we can always offer you help when you need it!

Peace and Blessings