The fight for health

[KateMa]

So I saw a rheumatologist who said I might have Sjogrens or I might not, and that even if I did, he couldn't really do anything about it. It was like having Eeyore as your doctor. The Immunology results were: Negative, the only Abnormal things I had were C Reactive Protein 7.3 (active inflammation) and TSH 5.06 which is above normal ranges and suggests Hypothyroidism (last time I was tested this was at 3.6). He basically doesn't want to test me further (like biopsy) unless I test positive on some other measure related to autoimmune.

I think I have gastoparesis. But it will take ages to get a gastroenterologist. So I'm using this website to research how to deal with the symptoms. The constant fullness combined with the extreme dry mouth and the celiac disease makes eating a real challenge. And I can't keep surviving on pudding and yogurt! haha! That can't be healthy. (and just think of how slim I could get if I didn't partake in the puddings and milkshakes)

I found a new Optometrist and he diagnosed stage 4 dry eyes and found a lid wiper epitheliopathy (stage 1) so he made my eye-lids smooth and that helped - and I got on restasis, which is also helping. He said my corneal ulcers were healing! YAY! I'm still waiting for an Ophthalmologist appointment.

I still have a GP doctor who doesn't take me seriously. When I described the symptoms of gastoparesis (before I knew what it was) he told me to take rolaids. Ugh. I must have "hysterical woman" tattood on my forehead. In Vancouver area its next to impossible to find a GP - and so you can imagine how hard it is to find a good one (IMPOSSIBLE). But really I think when you have a patient with a lot of complicated and vague symptoms who isn't actively dying, it must be the kind of patient who you really don't want. Have you guys dealt with this kind of attitude?

anyway, I slog away, fighting for health, fighting for support, fighting for information. Because I am strong and I never give up. I want HEALTH.

Kate

[angeldancer]

Hi Katema,

I understand your pain.  I understand having doctors that think you are hysterical.  I got my diagnosis in 2013 and it has been a battle to get people to listen to me as I tell them my symptoms.  It's real.  When I think of always having pain, I really want to yell at the whole medical profession.  I am in California and it is difficult getting doctors to want to find out the bottom line to what is going on with me.  I'm tired of the pain but I have to keep fighting on.  I starting to believe I have crohns or colitis and it looks like Im going to have to pay a GI specialist to look over all my test results.  Don't give up although I know sometimes it's hard.  I have to find my happy spot so that I continue to push through.

Peace and blessings
Angeldancer

[warmwaters]

So, your rheumy sure isn't helping.  If you did have Sjogren's, there are things that can be done to help. Not cure it, but help.  This suggests the rheumy isn't up to date on the latest information on Sjogren's treatment. Also, be sure to send him/her a copy of your eye results - that's some serious dry eye.

Here's the newest treatment guidelines.  Maybe it's worth sharing it with your doctor.
https://www.sjogrens.org/files/research/RheumatologyCPG.pdf

Keep trying - it takes time to find a team of doctors who get it.

[cccourt1942]

Forehead Tattoo:
    See, now, I would think more along the lines of "40's to 50's" and then he can see you are a woman. 

Most of us either noticed the symptoms in that age range...and a number of men who are joining this forum give their age as 40 and 40+.  Btw:  the men are NOT discarded as menopausal...imagine?  They are treated!! 

Anyway...I can't really help but to say you are among those who will understand, listen, help, and offer their experiences with you.  It's like mental health on the web.  Many SjS patients (and ON THIS FORUM) are seronegative.  You have already established you need a physician who will think outside the box and/or look into the disease itself more critically to establish what's going on.  You do sound as if you have some other conditions I will not discuss.  They do need further exploration however.

Welcome..and good luck Kate.  Are you overseas, Canada?  Where?
Sjoldier c3

[Judie P]

Hi, KateMa,

Since my symptoms seem to come and go, meaning that I get the gastro fullness, lack of appetite, and feel like my whole digestive system has slowed down and my daily bowels are marbled, it then switches a month later to a week of normal bowels and an appetite, I was thinking I might have autonomic neuropathy.  Seems my gastroenterologist, rheumy and nurse practitioner, which all I adore, seems to think I just need to be regular all the time.  In fact, they will not even look into it unless I am regular all the time.  If I have the problem, or gastroperesis, how can I be regular all the time?   Even when I try a stool softner or fiber mix, it takes a day before it kicks in.  Even my colonoscopy was an ordeal.  I ended up being fine, but the first half gallon of goop took four hours to start up.  By the time I got to the hospital to have the colonoscopy, they told me I wasn't clean enough and they decided next time they would give me two gallons of the goop.  Really?

So I have decided, for now, that I have one of these situations and I am not going to die from it.  l find myself not getting anxiety ridden anymore when I have all that fullness or no appetite.  I just eat less.  I do notice that when I stress out about things, all of it gets a lot worse.  I can eat the same things, same amount of water, and same fibers every day and I still will get the back and forth symptoms that you talk about.

[jazzlover]

Kate .. Be SURE to get treated for the hypothyroidism. It could be a BIG issue for you. It WILL make your bowels feel like they are locked up.

Keep pushing for treatment .. and go to Thyroid Advocates on Facebook for help if you need more info.