Had Follow Up With Rhumatologist...

[poppetkazutaka]

"We see some inflammation, it's definately autoimmune, but there's nothing we can do at this point. We need to wait until it shows more symptoms and has done a little more damage before we can act and right now treatment is symptomatic."

Translation: "We're going to wait until you've lost another organ or until you're admited to the hospital until we do something."

I'm done. She wouldn't talk about Lupus or anything else. She said that it would develop into something but she couldn't say what, and that 'oh, the positive reading for Lupus wasn't Lupus, it was just for inflammation'.

Funny, the National Lupus Foundation says different when corolated with the other results and the symptoms I have?

She changed the subject on me and then when I asked again suggested I get a biopsy of my sinus tissue in the future.

I'm done. Until I lose something else...I'm done.

[firewatcher]

I hear you! I have my LAST MRI tomorrow. No more! Unless they find a huge, honking goose of a tumor in my head, I too am done! I have questioned the difference between the definitions of persistence and insanity for over a week! (Insanity is doing the same thing over and over again and expecting a different result...I must be insane, by that definition!) I put myself through physical torture once a week so that I can crawl, exhausted, through the rest of the week until the next torture session because I'm supposed to adapt to it. Um, it's been over a year and I can't see any symptom improvement other than a smaller posterior. My OB/GYN was the first to say that I had "something" failing, but until it failed we wouldn't know what it was..........so i"ll wait with you.

[Notgivinup]

I'm so sorry guys. I have nothing to add, except this *****! I have no real answers either. I'm sick of it all.

I wish I could help, I really do. :(

[iheartcats]

I'm waiting with you! My previous ANA over a year ago that was positive...could be Lupus but we'd 'have to wait and watch.'

Today? I had nine vials of blood taken at once. The lab had no juice (I'd forgot mine in the AM rush). Nice. For more Rheum testing so I shall let you all know what that leads to. So far it's just been a day long headache and increased dizziness. I hate having that much blood drawn in one sitting.

It's so frustrating, though, to keep getting quite positive ANAs but nothing can be done. I don't want organ damage!

[Tachy Phlegming]

http://www.imdb.com/title/tt1242124/plotsummary

Funny too, I could swear she says on some of these shows that the patient could've lived if only he/she had seen a doctor.

I'm thinking you wouldn't have gotten less from a meeting with a practitioner of Reiki:

http://www.holisticonline.com/Reiki/hol_re...ntroduction.htm

[poppetkazutaka]

The only other thing she had to add was that I might form Hashimoto's Thyroiditis since my peroxidiase is at 166, but that it wasn't preventative. She said treatment was symptomatic...but gave me no medicine for any of my symptoms. There's only one other rhum here and he's in the same building. So I think I'm just going to have to wait. Get my book edited and published. Once that's done, I don't care what happens to me.

My dad yelled at me last night and said it's my own fault I'm sick. That it's because I look things up and I'm psychosomatic. Thanks Dad.

[MommytoSJEA]

((((((HUGS))))))) If we dont look things up, then how are we going to advocate for ourselves???? Dont give up. Find another dr, get another opinion. Even if you have to drive a bit, it might be worth talking to someone else.

Kelli

[janiedelite]

My dad yelled at me last night and said it's my own fault I'm sick. That it's because I look things up and I'm psychosomatic. Thanks Dad.

I came down with this horrible burning skin pain in June of 2008. It was (is) so painful that I felt I would go crazy, especially since I had NO IDEA what was causing it. My primary care doc was so empathetic and started referring me to specialist after specialist, but it took weeks or months to see someone. And they still couldn't help me until I went to Mayo 1/09.

My only method of staying sane the summer of 2008 was to see a therapist and to research online for hours each day, trying to diagnose and treat myself. My husband didn't understand my desperation, and that my only method of coping was to try to help myself. He only knew he was being ignored (he's a teacher and was home for the summer) and that he was helpless to console me (he admits that he feels desperate whenever he can't "fix" a problem). So I agreed to research online for just 2 hours a day. At first, he was happy because he was able to interact with his wife more often throughout the day. But after a couple weeks, he began to understand how distressing this pain was, and told me he didn't mind if I distracted myself from the pain by being on the computer. In exchange, I understood that he really wanted to help me and wasn't my enemy and I made an effort to regularly appreciate his effort to help me.

But I remember how alone I felt at the beginning of that summer. It's horrible when your loved ones blame you for something over which you have NO control. I hope your dad can come to an understanding of this. Doctors have so little time to research our rare constellation of symptoms. My doctor was actually very cooperative when I'd come to an appointment suggestions for various treatments or diagnoses as a result of my online reserach. I hope your dad will try to see things from your perspective.

Also, my doctors have no further possible testing or referrals for me. They know my body is messed up, but we're waiting for my illness to either go into remission or to get worse, in which case they'll be able to possibly have a better idea of the underlying pathology. Still, when I had my mild heart attack last November, I was only able to have my symptoms treated. They don't know why my coronaries constrict abnormally. I've had to be thankful for doctors who are willing to even try to treat my crazy symptoms, as many docs give up on even treating my symptoms.

[Mary P]

I'm so sorry , Poppet. I think a lot of us here are in the same boat. When I told a friend that a 4th N told me that there was nothing to be done to help me, she asked, "then why do you still seek help"? I said, "I had to try one more time but no more".

[firewatcher]

http://www.imdb.com/title/tt1242124/plotsummary

Funny too, I could swear she says on some of these shows that the patient could've lived if only he/she had seen a doctor.

I'm thinking you wouldn't have gotten less from a meeting with a practitioner of Reiki:

http://www.holisticonline.com/Reiki/hol_re...ntroduction.htm

Actually, you would have gotten a much better reception with a reiki practitioner. They would have listened to you. I was "trained" or "tuned" in Reiki when I became a massage therapist (although I didn't use crystals! ) It hasn't helped me a bit. My chakra's are still way out of line!

[Maxine]

I'm so sorry this happened to you. I know exactly how you feel. I've been on this same boat.

I just had a 3D CT scan that had over 1000 views to catch the instability in my cervical/cranial instability. I've had many MRIs and a couple of CT scan-----all that picked up abnormalities ranging from congenitally small posterior fossa/chiari-0, congenital cervical spine stenosis, many bulging and herniated disks, one completely desiccated disk, fluid in mastoid area for 5 years (but no history of ear infections per full ENT work up this summer), missing left vertebral artery resulting in an enlarged right vertebral artery, brain lesions, pannus growth on odontoid bone, and a broad based disk bulge on C1-2. I have mechanical problems-----this is on top of the EDS and POTS. I also have hashemotos thyroid with very high anti-bodies. My head feels like there's a vice in there trying to push out both sides of my head, and now I have something sticking out in the back of my throat.

The 3D CT scan was read as normal----no instability. This scan was done with my head turned to the right and left. It's a scan my orhtopedic surgeon is doing now to try to prove this instability is REAL. My EDS geneticist and I were both excited that this might finally be the "proof" these other dismissive docs need. Nothing worse then feeling horizontal subluxation of your head off your neck, slurring sppech, sudden weakness, drop attacks, confusion and other fun symptoms, and then be told your imagining this.

We have to do our own research. I know someone in Calf. who's situation is almost identical to mine, but she was told to go to a major hospital for shunt placement due to CSF pressure in her head. When she went they dismissed the whole thing and told her she was nuts. She was so happy to finally get this pressure out of her head, but then got the life shocked out of her when she found out the whole thing was for nothing. It felt like a bad joke----

I e-mailed my EDS doc, and he said the radiologists are not familiar with this type of CT scan, and have nothing to compare it to. Doctors who are familiar with cervical cranial instability related to EDS are trying to work with radiologists right now to understand what to look for. I would not continue to pursue this if I wasn't the train wreck I am, and if NIH didn't confirm this instability-----but they did, and they are one of the big boys, so you can't deny their opinion.

Everyone is getting tired of lazy doctors. There's no passion for HELPING patients, and the ones that do have passion are overloaded because of the arrogant and lazy docs.

It's Sad many of us feel like it's going to take a catastrophic event to happen to us to be taken seriously.

I hope I don't have a stroke---or worse..........

Don't stop doing what you need to do, even when you feel like it's the end--------and ask for a copy of the clinical notes, so you have those words in writing. Then if something happens, you have their words on record!---- Good luck to you.

BIG HUG,

Maxine :0)

[erikainorlando]

Keep going! Don't let the turkeys get you. I just posted and I wanted you to know that if I had pushed a little more perhaps I wouldn't be unable to move and frightened out of my mind at the prospect of a neuromuscular disease.

It is hard telling but we have to believe ourselves. We know when something is wrong but we don't always have help. I was so fed up that I just waited until they dialed 911 on me. I figured it would be like that...I just didn't want another person to tell me it was in my head.