Finally Diagnosed
 

Hi Everyone, I've been battling immune problems for four years, I have been through three rheumatologists all who were giving me different diagnoses, so I finally have what I feel is my finally good rheumatologist who I just went to this past Nov, she put me through a ton of tests, I saw her yesterday, and I was just diagnosed with a connective tissue disease that is consisting of lupus, ra, autoimmune thyroidits, plus I have osteoarthritis of my hands and feet, disk degeneration disease of my lumbar and neck spine, I've been through two spinal neck fusions already, I'm only 43, and have been having symptoms for probably as long as 7-8 years.
I currently take plaquenil, evoxac, topamax(migraines), lyrica(nerve pain), and rheumy wants to start me on methotrexate.

I'm currently have awful exhuastion, and feet, toes, and hand swelling, feet become very painful , plus I'm battling very bad pain from my back and neck.

I'm currently scheduled to ct-scans of my chest, abdomen, and pelvis, this doc really seems to be covering everything.

It's about time, I have never gotten such a work-up like this ever, my last rheumy before this one didn't want to see me for nine more months, needless to say that was the last time I saw her which was only four months ago.
I do have problems with my white blood counts, but thankfully this time around all was ok.

So if you don't mind me joining here, I'll be happy to come.
DaisyMae

Is this area generally quiet, just wondering.
DaisyMae

Hi Daisy Mae
 

Yes,
This forum is quiet right now. I think the cold winter has everyone in so much pain they aren't posting much. I know I haven't because sitting is so painful. I hope you will come back and share the things your doctor finds. It might help someone in the long run and we might be able to help you in some small way.

Welcome to you,
Billye

Hi Daisy Mae,

Yeah as an fellow autoimmuner this forum is quiet. Many of us have other condition and post in several other forums and read here too.

I have thyroid problem and eventually got mine taken out. Have you had your checked along with thryoid antibodies?

A good rheumy is hard to find. I am glad you found someone.

Also make sure someone checks your sex hormones esp estradiol and testosterone. Often hormones can be the source of many problems and when we get into our 40's the declingin estrogen can wreak havoc. I just discovered mine are a contributing factor.

Feel free to pm me if you would like to talk more.

Two good things?
 

First, you've stuck it out; and, Second, your last doc sure sounds like the 'CHARM"!
Getting a doctor to really be thorough in testing and believing you enough to DO the testing is such a challenge for all of us. Looks like you are not only getting the testing, but for the entire 'enchilada' as they say? I say About Time!
As you know, all folks here, know about all the different kinds of pain all these different diseases/conditions can cause for us. Please, do, keep us all up to date on how the tests all come out....Do NOT expect that all the things the doctor is checking out mean you have them all. I surely truly hope NOT! Testing in the rheumy and neuro world consists of trying to eliminate all that is 'testable' then trying to fit you/your case/situation into the best 'box[es]' for treatment. I sure hope it's soon! - hugs - j

Thanks everyone, I do find that the changes in weather make me worse and now that the cold weather has hit again I'm not feeling all that great. My biggest complaint as of today is not on the health front but from the family front, my mom gives me no support, none at all, doesn't even acknowledge anything, when I tell her I'm down and out with the exhaustion she tells me to fight it. When I had gotten back from my rheumy visit she called to see how I made it when I told her what the final diagnosis is she said to me "you'll have to deal with it and hang in there with it", and then said well I've got to I'll talk to you later', that was it. At least I'm thankful that my husband is very supportive and he has been through all these years. I go for all my ct-scans on Tuesday, and have to drink contrast before yuk...........but hopefully all scans will be a.ok....
DaisyMae

New here too!
 

Hi, I'm new here too, just diag'd with Autoimmune Hepatitis and have been posting and getting some great advice. Keep on the research bandwagon and something good will come of all your persistance. God Bless!

Glad you could get a dx. Sorry you are having so many issues.

Please get checked for Celiac. It is an auto immune disorder which occurs due to sensivity to gluten(wheats, oats, rye, barley) and untreated it causes other autoimmune disorders. Lupus, MS......

Even if you test negative, I would give the diet a try for 3-6 months and see if symptoms wane. It is hard at first to clean out everything in your house, change out toasters, teflon pans....etc.....but well worth it.

I know now my early Graves will not progress because I will be absorbing food properly.

Thyroid/Hashimotos?
 

Hi Everyone, got a question, I had an appt last week with my gyno, and she is surprised that I'm not being treated for the thyroid issue, she said especially since I tested positive twice for the autoimmune thyroid panel, and that my T3 levels were twice as high as they should have been, she called it Hashimotos, she said that usually they treat you for this, now I'm seeing my Rheumatologist tomorrow so I'm confused as to what is going on with this part of my problems.
I do have enlargement in the front of my neck, it's so noticeable that I actually look awful on pictures there is definitely swelling in the front of my neck, I've had an ultrasound done and an up-take scan done of my thyroid and my rheumy said that they were both fine, can this be that these scans are fine but my tests are not and I still have enlargement, I've had my rheumy and my family doc both say that yes my thyroid gland is definitely enlarged.
I'm so confused, I don't know what to do with this part.
Any help would be appreciated.
Thanks! DaisyMae

Hi Daisy,

I too am surprised if you tested positive for thyroiditis that the rheumy is not treating it. There have been some research that says that even if your thryoid levels are within the normal range that patients benefit from being treated with thryoid hormone.

Basically with thryoiditis your thyroid is being destroyed. The enlargement is called a goiter. I had both.

Do you have a copy of your blood tests. If no make sure you get them and you will learn to follow it and how your body feels.

Make sure the rheumy did all of the thryoid antibodies tests as well as TSH , Free T4 and Free T3.

Rheumy is a fine doc for many autoimmune things but I think you should also see an endocrinologist for the thyroid part. The range of normal changed in the last few years and not all docs are up on this since it is an endocrine speciality.

Thanks Shelley, I'm definitely bringing this up with her tomorrow, it will be interesting to see what she tells me.
DaisyMae

Hello DaisyMae!

I wanted to say hi and tell you that I am a fellow autoimmune sufferer. I test positive for lupus and have the RH factor (have arthritis) and am diagnosed with the 'antiphospholipid syndrom'.

I had a stroke at 19 (am in my late 40's now) and it left me with central and peripheral vertigo due to the 'APS'.

My diagnoses came only a few years ago after being ill....forever. I have also had 2 muscle biopsies that show myopathy/denervation. That being a problem for the rheumatologist, because she doesn't know if the positive ANA is from the muscle disease or lupus. I recently had a series of small strokes, again.

Either way I am on 'Methotrexate, Prednisone, Folic Acid, Topamax (for migraine) Neurontin, Cymbalta, Alprazolam.

It took my body a while to get used to the MTX. The prednisone made me feel amazing....until they tapered some what.

I hope your appointment went well. Good luck with everything!

Hi There Colorado Chick,
I too am new here and afraid to click on anything as I am not to versed in all tis yet, but in I dive as my issues are such I hv to be proactive, as some docs are not and they will string you along and out till ou get fed up...i hv bn dx'd w/ SLEM in severe form, and am on plaquenil 2x a day, then got on prednisone, and they tk it away, then dapsone and it did real damage after only thre weks and days, so it gone and now all symtoms are bk w/a real vengenance and its bad, lesions all over trunk and in various stages of develpmnt and healing w/alot of pain...my ? is Hv you found any drug particularly effective, or drug combos that wrk for you? I am in search of a drug that will wrk w/plaquenil effectively...over the long haul....so any info u hv that you can pass along or get from fellow auto immune disease sufferers, pls pass it on..am anxious for any news from all sources. It took 14 ys to get the rt. diagnosis, at least they think its rt., but now nothing else hlpful out there----I just cant beleive that.there has got to be something....thanks for listening and hope to hear from you, and if you hv bad health problems, i wil be thinking and prayin for you to be well, be happy, and smile, even if its only in your heart.....deesgal:mad:

BlueMoon,

Have you noticed if the Folic Acid affected your urine output at all? I was taking it for a while and it immediately made me pee twice as much which then made me really thirsty. Since going off it, I am back to normal. Just wonderful.

wishing for the Survivor immunity idol right about now
 

i'm constanting trying to see how all the pieces attempt to fit together and i have questions.
heard that gluten can affect during a flare? what does a reading of 26 mean on a celiac bloodwork test?
one doc says i'm clinically hypothyriod. hashimoto's is thrown around. never lands. my anti-tpo is 3120! anybody else ever had such an idiotic level? what to do?
positive anti-dna and ana test as well
have had 8 years of neuro drama.
go through episodes lasting 4-6 months
approx every 2-3 years
where the left side of my body shuts down
we're presently calling it by what it does..
relapsing-remitting demyelinating disease
of the autoimmune garden variety..
a little bit of everything
that's my vent
any suggestions on how to tail these bunny rabbits into their conclusive holes?
right now it seems like there are too many rabbit holes and not a glimpse of Peter Cottontail!
Thanks.