I thought I was put on Methotrexate, but maybe it was Plaquenil, in the early 90's. I don't recall having a positive response. Recently, Prednisone has not seemed to control the symptoms as well. I am getting some relief with Flexeril as I attempt to drop the steroid dose.

This doctor said there were some new treatments that he would discuss in person. I am afraid to get my hopes up too much. I am also gunshy over new drugs.

If anyone has emailed or considered emailing for an appointment, he said he will be out on vacation for a week starting tomorrow.

I do feel the burning is probably due to small fiber neuropathy, but have been unable to convince anyone to do the biopsy, which he said would be done during the visit.

I have the burning Billye. It really is painful. A drug that helps blunt widespread burning: Urelle. You will think this is crazy, it is a bladder analgesic. As I explained to him, I have to juggle all of these things around to get relief.

Glenn: I keep hearing from other doctors that it is simply dry mouth, dry eyes, which is a crock... I saw a Baylor periodontist researcher once when the burning was in my mouth. She told me that "they" are finding that Sjogren's can affect various organs in the body... (I use Periomed for that-a prescription dental mouth rinse, along with Sensodyne toothpaste.)

Gee, she seems to be the only one around here who has caught on to that... I still haven't found the "theys" in our area.

Cathie

Dr Birnbaum emailed me back yesterday and wants me to see my PCP to have additional blood tests run:

(1) .....for the Sjogren's antibodies. These are the SS-A, and SS-B (also known as anti-Ro and anti-La antibodies)
(2) Do you have any symptoms of dry eyes? If so, your PMD should refer you to an opthalmologist, to have a simple, painless, and noninvasive test, called a "Schirmer's test"
When these tests are done, if either of them are positive, then it would be possible that you have Sjogren's

That was fast!
I'll have this checked out on my next visit to see my PCP & my ophthalmologist.

Bob--Have you never had those tests done? Really? Please say it's not true.

good time
 

To those planning on going to Hopkins: This is a good time to compile all your records and fill out the Lizajane.org charts. You can do it by hand or on the computer. But whatever you do, do get old results and track them over time.

I have the SS-B la la la antibodies also RNP, Schirmers-my eyes and mucous membranes are dry, but that seems to vary. Sometimes they don't seem to be as bad. I have some other autoantibodies that no one can ever make any sense of.

Thanks for reminding me, Liza Jane. I have done part of the chart, but just could not get very friendly with Excel, which I need to do, since you can record tests, results, dates etc and then magically put them in order by date with a click...

I must say, when I put what I did in order for one of the doctors to go over, he was most impressed... You should have a gold star... (:<) Or maybe you should have a patent...

Cathie

I'm not sure. My neuro (head of the dept @ Hopkins) is adamant about pre-diabetic causes, and when he saw that I was hospitalized (2000) for pancreatitis due to an alcoholic binge (I was self medicating with booze, had been suffering for years, & mis-diagnosed until that hospitalization) and Bingo ! 'Alcoholic Neuropathy'.........Go no further.
I'm, AN & pre-diabetic (high normal range).

Supposedly, he says I do not fit the mold for hereditary(?) Even tho I'm of Ashkenazic Middle-European Descent.(?)

My PCP has given me other tests that I requested (celiac, etc- she works with me), but do not know if I've ever had these two specific tests.

I'll have to ask her, and if not, get them done-but I do not have dry eyes. Crusty at times, but my ophthalmologist says its due to blephemitis and MRSA.(from when I spent 3 mos visiting my son in hosp. - daily. I Caught it from him. He caught it in the hosp.).

Nide
 

Have you been improving with supplements and diet and, hopefully, exercise? If it were alcoholic or pre-diabetic, I'd expect you to improve.

No improvement to date, but do take a boatload of suppliments -
exercise ....welll !! I should, but seldom do.
I have found that the progression has either stopped or slowed down to a crawl (time for another skin punch, I think) and with meds I lead a fairly normal, (pain levels at a tolerable 2-3), if not partially sedentary life after I get home from work.
I work in the locksmith trade and have my own business, so I do everything
from pay the bills to drill doors for locks - both commercial & residential.
Automobile lock work (very profitable) is too physically demanding with my PN,
I've stopped all but the lockouts.
I get home tired, sore, and ready for my 6:00 pm meds, but I go to work every day and haven't missed much time - since we've found the right med combination for me.
But additional (and follow-up) testing isn't a bad idea. I really should be more diligent,
but I get so tired of doc and doc appts. I haven't seen my PCP in the last 7 mos (and usually she has me come in every 2 mos) or my neuro in over 2 yrs.
A rest !!
No 'Chinese Fire Drills' (3 Stooges style)
or emergency needs.
A breather for a change.
I'm basking in it at the moment.

Bob
 

You did what so many people for pain self medicate,one of my
kids in-laws new he was a Diabetic but for years,and really the
type of job he had he would have drinks for business lunches,and in was
in pain with PN,he as many had no idea what that was.

He finally when to Family Dr. and she sent him to neour,hehaven't had
a drink in yrs,he lost weight,he excercises,can't walk without cane
or walker..He had all the tests and has the best insurance.16 yrs. later
the man is not getting better. Oh and sumppliments,his Diabetic is better,
he's in hs 60's but he suffers from PN from feet up the legs and
hands and up the arms..He is retired,and has the insurance and money
to go th hopkins,he is close enough to go to Barnes Jewish which is
where his Neour is,question why is he not getting better,oh he has
a great wife who watches him like a hawk..ha They were able to
travel but he just can't anymore.. Hugs to all Sue His b12 was normal.

Oh
 

Since my insuance saids no,i want to wish every all the luck.
I was diagnosed with SJogrens many years ago,I'm interested
in vasculitis well everything..My Ophthalmologist sp mother
has Sjogrens so he was very kind and my eyes were very dry,
Cathie he suggested I do what you do for mouth and teeth.
I also use suger free candy,and lemon drops or old theory
plain lemon suppose to milk the duct that can be blocked.
You don't want to get a stone.

Take good notes so we know what he has to say,New meds
might make me worry a bit to Cathie, well wouldn't hurt to
check it out. I been reading medical records ,for somthing
else for days. Hugs and good luck Sue