02-11-2011, 12:33 PM
I went to the rheumy yesterday, and now I'm going to try to get an appointment with the Sjogren's specialist in San Francisco that BonusMom sees.
She finally listened to me when I mentioned that I fall a lot. She thinks that it is "something neurological and mysterious", and suggested yet another brain scan. She just wouldn't listen when I tried to point out that both Lupus and Sjogren's can have neurological manifestations. She said that MCTD is "just" autoimmune issues, not neurological issues. I beg to differ!
She did give me the paperwork for labwork - for June. That will be nine months from my last labwork. I looked at the form - She marked Comp Metabolic, CBC, TSH and free T4, but didn't even mark the box for Liver Function Panel! Since I take MTX, she's supposed to be checking that at least every three months. Now I wonder if she has ever checked my liver function in the last 18 months! Can you believe this, folks?
My next appointment was with the ophthalmologist, which was the total opposite. He sees me twice a year, and once a year, he does the full check-up for patients taking Plaquenil. He checked my retinas, peripheral vision, dilated my eyes and gave me a prescription for new lens in my glasses. He was surprised that my rheumy has never increased the dose from the "starter" dose. He's aware that most adults take 400 mg, not 200!
So, I had one good check-up and one bad one.
02-11-2011, 12:42 PM
Hugs and good luck in finding the new one. Have you looked in San Jose or up the peninsula. I was going to say Redwood City; but doesn't Stanford have any Medical?
Stand firm Marla, we endure......
02-11-2011, 05:08 PM
If it walks like a duck and quacks like a duck.....
You won't be sorry that you transfer your care to Dr C. (or another qualified rheumy for that matter). Call Tuesday and make that appt because it may take a while to get in. I'll send you a PM.
02-12-2011, 05:13 AM
You are sooo right, Marla this one needs to get fired and fast.
She thinks she is God in a white coat.
I hope that you can find a good rheumy soon. We all know, that there are good ones out there.
Great job Marla! A new rheumy is what you need to do! I hate the docs that have no clue and treat us as if we are stupid! Way to go!
02-12-2011, 03:13 PM
I think she needs to be reported i am on methotrexate and i get a cbc and metabolic every month . Hope you find a competitent doctor. Bonita
02-14-2011, 08:58 AM
Marla this doctor is making me really mad for you and all the other poor suffering patients not wise enough to her ways yet. I'm glad you are self aware about your conditions already and are walking away from her. Make sure you call and get a full copy of your medical records from her - even if the labs are incomplete.
02-15-2011, 05:50 AM
Good Morning Marla! And Big Hug's to You!!! And Bless your heart, It's terible that with
all we have to go through with dealing with our disease, AND ON TOP OF THAT TRY AND
STAY ON TOP OF OUR DR'S TO MAKE SURE WERE GETTING THE PROPER CARE WE NEED!
I can honistly say i know how you feel as i went through it for 7 yr's with (3) rumatologist
and (3) Neurologist! And congrat's for you stepping up and speaking out when you know something is not right with your body and you know test should be preformed for meds your
takeing , and dr' are not careing enough to do ther job and the oath they took to put the paitent's health and well being first.
My first Rumatologist i was sent to due to ongoing and worsening AI SYMPTOMS, also
labeled me as MCTD and i was also told it was " JUST" autoammuine issues and i also beged to
differ that was 4 years ago, my symptoms were when i would get sick with the flairs,
low grede fevers 99.9 - 100.6 acheing all over, severe muscel spasams in leg's and body,
numb hands and leg's and feet, hand tremmors, i was constantly dropping things, would miss my mouth when trying to bring a glass of dring to it & spill it on me, i was tripping a lot,
i would be waking & my leg's would like just get weak & buckle on me and i would fall down
I thought maby the leg weakness was my sugar had fell out as from time to time i get hypoglycemia, so i put it to my sugar falling out till it kept getting worse with each flair i had,
mouth & nose ulcer's hair falling out by hand fulls,hives, sores on my body, then the thinking part on my brain startrd messing up, first my numbers i would write backwards & letters,
i couldent figure out simple stuff like putting togeather a menue and the ingredents for christmas dinner as i do every year, out of the blue crying spells for no reason, then a year and half before my diagnosis i would be checking out at grocery store and went to pay for food and my mind would go blank out of the blue and i would get very confused and didnt know how to
pay for it! would go totaly blank if i had to pay in cash and check! And i ran a convient store for 12 years and dealt with cash & checks and lot's of money daily and use to be able to count cash back from a $1,000.00 dollars cash with purchase in my head not a adding machine!
That's when i got scared and knew something was very wrong with my brain!
First rummy said i had MCTD of lupus ,sjogrens and ryanuads overlapping, and when id get very sick and severe knee and back pain he'd just pop me with a steroid shot and give me antibotics & send me home, till my balance and thinking problems started , then he sent me to a neurologist, they ran me through the ringer til tabbe test and 10 more test to look for maby M.S.
OR SEZURES. My MRI with dye at that time came bk with one leasion on my brain in the subcortal white matter.
My neurologist litterly slung the mri paper off the desk and said lots of people have those , could be where you had migrains years ago, mind you i was haveing to use a cane at that time to help keep my balance!
Then he wanted me to go to the hospital for a week to do a sleep test, at that time i fired him and never went back to him, also my gp sent me to a new rumatologist, And she said the same thing as the first one and didnt quite know how to treat me mctd lupus sjogrens etc,
then legs got worse, started haveing stroke like symptoms, numb face,legs, hands , high resting heart rate, memory problems more severe, running into every thing, 5 e.r. visits last year
due to either sjogrens or lupus attacking my baldder causeing neurospastic bladder ,spasams of the bladder causeing me to dehydrate, tyackardia, and the stroke lkie numbness in ine side of my bady, the hospital dr's said they thought i had and diagnosed me with M.S. After they
did a cat scan and 2 brain M.R.I'S at that time a year and a half from first mri where i had one brain lesion there wer 12 lesions in the frontal lobes of my brain on both sides in the subcortal
and frontal parietal white matter and said this likely represents a demyelinating process.
And on the radilogy report it also said given the paitents clinical history of multiple sclerosis
this is likely a demyelinating process! And Marla, I liked to had falen off the table!
NO one ever told me i had M.S.. So i cryed all the way home, So here i go to another
new nurologist specialist as the E.R dr's said i needed to go see a neurologist for the 12 brain lesions, So i did, and spent another 6 months being tested for everything in the book for ms
last test cause all others were negative except they found dammaged nerves in my feet, legs and hands,prep neuropathy, lupmar punct neg for ms. So that neurologist said i belive you
have a brain disease caused by most probly the sjogrens has causes cns vasculitis!
And he relised me but on his new mir it reviled several new small lesions on it only 6 months apart from the one with 12 lesions.
So from there i go back to rummy with all my test he did she didnt know what to do with me either so finaly she sent me to the university hospital injackson to the reumatologist thet specialises in lupus & sjogrens he took i think the rest of all my blood all kinds of test and had all my medical records and got with his colegues on my test and hes the one that figured it out
and diagnosed me with lupus ,sjogrens, and ryanusds overlap not MTCD. AND CNS VASCULITIS
and said most likely with all my symptoms and test best he could figure he thought it was the sjorgrens that had gone to my brain causeing the vasculitis. But without a brain biopsy thers no way to tell for sure what it is in my brain could be the luopus or either cancer caused by one of them he stated to me, but he was pretty sure it was the sjogrens.
And by that time so much valuable time had passed form being sent from dr to dr. and all
of the were left scratching ther head's to be specialist in the AI diseases,
By the time of my diagnosis he said it is progressing very fast in my brain as the vasculitis
attacks your arterie's and destroys them therefore they dont get the blood flow and oxygen they need to survive in your brain as the disease had went through the blood brain barrier,,
so he give me my options and different med's and seriousness of my brain disease and said
i would need strong med's to try and slow the dammage process down, and a poor outcome
if the med's dosent work to slow it down.
And the hole time over the years of seeing different dr's i kept telling them something was not right with my thinking and numbness and falling down, And you'r body tells you when something is not quite right, It's just getting the dr's to listen to you or finding one that is hard to find
that cares enough and realy understands the problems that the lupus & sjorgrens and raynuads can cause when it attacks other parts of your body and causes the sometimes rare affects
of the diseases.
So my brain dammage on the part of the brain that is dammaged has also caused the nerve dammage in my leg's to where they stay numby feeling most the time, and feet, I didnt know
that a part of you brain worked your legs and balance and breathing, till dr' told me.
and also told me as bad as it was it;s a blesing in a way that the dammage is in the front part of the brain cause the back pat of your brain works your heart & breathing & vital organs
and if it gets on that part & kills it id have to have a venterlator to breath, And i surley
PRAY it dosent get that part.
So glad yoyr getting a good rummy specialist AND I PRAY YOUR MRI COMES OUT GOOD!!
Sorry a long post, But giveing you my long jurney with doctor's and trying to get a diagnosis
People are so blessed to get there AI DISEASES diagnosed earley, And some still in limbo land
and some years and years and some never even get a diagnosis of what AI disease they have
Big Hug's to you Marla!!!!!!! Thinking of you dearly, and wishing you the beat of LUCK
with your new doctor. Let us know how it go's, ~ Diane ~