I hope I'm in the right place.....I'm losing my mind

[spontcumb]

Greetings,
I "found" you all today.  Thank God!!!  I'll try to keep this brief.  In January, 2004, I began the first of 2 treatments for Hepatitis C.  Treatment consists of, in my case, 48 weeks of weekly injections of pegylated interferon and daily oral doses of an anti viral med called ribaviren.  Nasty combination.  Both treatments ended early due to pneumonia and hospitalizations.  2 months into the first treatment, I began to lose my teeth.  They started breaking apart....pieces, not an entire tooth, (sometimes), and no pain or blood involved.  My teeth basically died.  I now have 1 & 1/2 teeth remaining.  Along with this, I also have significant cognitive loss....memory loss, brain fog, major time depression, 60% loss of hearing in both ears, balance disorder, skin rash, neuropathy in extremities, severe joint pain, loss of bowel and bladder control, a recurring fever....always at 103 degrees.  It will last for 4 - 5 days and then disappear for a week, maybe longer.  I'm under the care of my primary care doc and my GI.  I'm getting nowhere with either of them.  I thought I was crazy.  It's all in my head.  I'm actually causing my teeth to fall out and all of this other stuff to happen.....it's gotta be me.   Then, about 2 months ago, I saw an otolaryngologist(?).  He diagnosed my hearing loss and balance disorder.  He was also going to prescribe a benzo for me, but he saw that I am already taking zanax.  That made him curious.....(yippy...finally.  Someone is taking an interest).  He decided to try me on Topamax, (though he said he doubted it would actually do anything for me.  It's worth a try).  I should mention that until recently, I had been blaming the Hep C and/or the treatment meds for my symptoms.  This doctor suggested it could be an immune system disorder.  When I asked him which one, he said he could only tell me that it's not one that has to do with the "head"....  So, I hop online and...here I am.  How does a patient get their doctor to listen to them and to ACT?  Rhetorical question.
Anyway, sorry for babbling.  I just needed to let off some steam.  I don't even know if I belong here.  I do know I'm losing it! 

[Joe S.]

Welcome to the Forum. It seems like you have been hit hard with AI diseases. Others can tell you what you need for blood work (SSA, SSB, ANA, CBC,?). I recommend that you make a list of all of your symptoms and take an advocate with you to your next doctor appointment. 

I have posted the meds and supplements that I take in my signature and my DX under my name in the hope that it helps others. There are things that can be done to help you manage your symptoms. I think that management is all we can hope for with western and eastern medicine at this time.

[CK]

welcome to the forum. You have been through so much as most of us here as well...i am learning alot here -- little bit at a time trying to get my brain to wrap around it all.it's so overwhelming ! I hope you can get some rest and comfort if even for a few brief hours -- prayed for you too.

[spontcumb]

I'm finding peace here.  Thank you!

[Patze]

Hi Spontcumb,

Let me also welcome you to the SJS World and family!  Please look around the board as there are tons of topics and scads of information that you just might find interesting!

I'm sorry, but I can't diagnosis you as I'm not in the medical field or anything like that.  Can  you ask your primary if he'll refer you to a rheumatologist?  Or if your medical plan allows it, can you self refer?  

It took a GP almost a year to refer me to a specialist when I had obvious thyroid symptoms including having a goiter that was pressing against my throat (had done a thyroid scan several months before I was finally saw an endo (the highest my TSH got at that point was 4.98 or so, and the range the local lab used was .05-5.50; so I sure understand doctors not looking past the "numbers" to treat the symptoms).  The first day seeing the endo, I was put on Synthroid, and have been on a replacement for a bit better than six years now (even told the GP what the endo said and she just kind of shrugged and walked away; fired her).

I'm so sorry about your teeth, and I sure wish I had some information to help you there, and you'll find a lot of the members here have had miserable experiences with their mouths (I've had my mouth rebuilt twice now, and I don't think that I'll do that anymore (too expensive even with insurance); my mouth is not as bad as a lot of members).  

Whew, you have been through a medical nightmare!  I'm sending you some gentle

( ( ( ( ) H U G S ) ) ) ) )
and I sure hope that you start to feel better soon.

Take care of yourself -

Patze

[Meld256]

Hi Spontcumb,

I also want to welcome you to Sjogren's world.  Sounds like you have certainly had a hard time of it! You have been through so much and still trying to get a doc to listen and ACT. That seems to be a recurring theme around here, unfortunately.

Please see if you can go to a rheumatologist. You may actually need to try a couple to get a good "companionship" with one. Don't give up; if you don't like the first, try another til you find a doc who will listen to all your problems.
As Joe S. suggests, I would also suggest taking someone with you and have a list of everything no matter how small or what you might think as insignificant.

I've only been diagnosed in the last few months, but I can relate to the teeth/mouth problems. My teeth have crumbled in the span of 9mths-1 yr. Unbelievable, really. Anyway, whatever is going on with you, I can tell you it's not all in your head and you are not crazy. You may have several overlapping autoimmune issues, but there are treatments that can help. Just need to find out what you are fighting before you can fight back!

You never need to apologize for letting off steam here!  This is a safe haven to do that where we will listen and will understand. Sometimes we need to vent, so vent away!!
My thoughts and prayers are with you. You are not alone. Please take care and keep us updated.
Blessings,
Melinda

[navydad]

I cant remember the full title,, but theres a thing on the web called liza (something).org,, its a list of bloodwork that should be done to look for AI disease,, i think its called lizasheets.org,, look it up,, print it out,, take it to your GP if you have one,, but it sounds like you dont or he or she is a idiot like mine,, write down test results,, and keep track of things,, this way if you see a new doctor,, and he wants to do a test that you allready had done,, no sense n reinventing the wheel

[Sha]

You most definetely belong here! If they took me and my twinzy under their wing so fast...i will schooch over so you can fit under their wings too! They're really great, helpful and caring peeps!

Hope you get some answers! Im new to the diagnosis too. I posted a random checklist a while ago that you can print off and fill out to take with you to doc of random symptoms. Search for checklist brain fog and it should come up. If ya can't find it. I will post the link...posting from droid and being lazy;)

Sha

[spontcumb]

I'm finding myself very humbled.  Again, thank you for your kind welcome.  I wanted to share some good news, (something that's been rare in my life lately...lol).   I was awarded SSDI in January, 2009.  I have a 2 year waiting period before I'm eligible for Medicare, (I live in Wisconsin).  Though I'm eligible for the State's Medicaid program for the Elderly, Disabled & Blind, they've had me on their basic T-19, (Badgercare Plus Core program), which covers next to nothing.  Only primary care doc and certain specialists, who "choose" to accept that plan.  I've not been able to see a dentist, have my eyes examined, hearing tested.....blah, blah blah.  Anyway, the State called and informed me that I am now eligible for, (and have been) full Medicaid!!
Now, I need to find a new Primary care doc and get referrals to a rheumatologist, neurologist.....specifically, a new primary care doctor.  The one I"ve had for the past 6 years has done nothing for me.  Other than watch my body and brain deteriorate in front of his eyes.  He hasn't said a thing about my rapid weight loss, increased Rf factor, tooth loss.....nothing.  My GI has written me off because my Hep C is in remission and the symptoms I present with are not, supposedly, compatible with Hep C.  Though, one would think, based on lab work, biopsy etc, that curiosity would result. Or am I making an assumption?  I can't figure out if it's lack of coordination between the doctors, not looking at results of diagnostic tests ordered, my gender, or lack of knowledge.  I don't mean to babble.  I think I'm just letting off some steam.  But having found all of you, and now armed with insurance, I feel empowered again, though my head is still spinning....literally ; )  Again, I thank you  all!!!

[Sha]

Feels good under their wings...huh;)

Congrats on at least one thing going right for ya! Hold on to the lil things in life and build on those!:)

Sha