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View Full Version : Made a Desperate Call!



jolynnhughes
07-23-2012, 04:20 PM
After having her tell me she didn't need to see me again unless I got a rash or sores in my mouth, I made a call back to the rheumy I saw a couple of weeks ago. With my new eye doctor diagnosis of chronic dry eye and inflammation consistent with autoimmune, I thought that would be enough to get her interested in helping me, but she had the nurse call me back to say, "even if it your dry eye is autoimmune in nature, the only treatment would be the eye drops the eye doctor prescribed." Well, that was enough to start the water works, and that nurse got quite an ear full between my desperate sobs. I told her that I had done as I was instructed -- went to a specialist for any new symptoms, called the PCP back to discuss my Hashimoto's, took the Mobic prescribed by her for the joint pain (because the rheumy would not give me anything -- suggested Advil or Aleve), but my joint pain, exhaustion, hand and foot pain, etc. are all still there, and some are worse. I told her I was tired of being passed around from one doctor to the other, and I was tired of feeling sick all the time. I continued to tell her that it is not normal for a healthy, happy, active person of my age to suddenly feel sick all the time. I told her that after nearly three years of doing everything I was told, following all doctors' orders, having one test after another and seeing one specialist after another, I demanded someone do something differently, try something new. I asked her if her doctor was willing or if I needed to find someone else who cared enough to get to the bottom of my problems. She was very nice, and very sympathetic and said she would let the doctor know and get back to me.

I didn't hear anything back within a couple of hours, so I called and made an appointment with another rheumy and then called and left a message for her to forward my records to the new doctor. Surprise, surprise, I received a call back saying that the doctor would be more than happy to explore some different treatment options with me and could I be there at 9:00 tomorrow morning. I guess I'll go since I got an appointment so quickly, but I'm keeping the other appointment with the new one scheduled for the 1st until I see what happens tomorrow. Moral of the story: THE SQUEAKY WHEEL GETS THE GREASE!

My question to you veterans is this: Is there any reason why a doctor would not at least TRY Plaquenil? I know you are not doctors, but I would like an opinion.

tgal
07-23-2012, 04:30 PM
My only guess is that because your symptoms fit with the other AI disease that you have and plaq. Is not a protocol for that, he sees no need. Not saying if it is right or wrong but that us my guess as to why

jolynnhughes
07-23-2012, 04:36 PM
You are correct, Tgal. Most of the symptoms I have do have fit with Hashimoto's, but they also fit with most of the other AI diseases too. But the eye inflammation and hand/foot pain and splotchiness do not. I'm hoping to convince her to give Plaq a try. I was just wondering if there was some terrible side effect or other reason she would not be willing to do so. I have also seen that low dose Maltrexone is also used with both Hashi's and other AI diseases. I don't really understand what or how that works, but apparently it does with most people. Maybe she will consider that. I don't really care what she tries, as long as she tries something other than the thyroid medication and Mobic that don't seem to be working. Thanks for the quick reply!

steve.b
07-24-2012, 05:13 AM
my rhuemy is very good to me.
he explains everything in basic language, so my lupie brain can comprehend.

my understanding of both methotrexate and plaquenil is......
they are desease modifying drugs.
that means that they create a chemical reation within our bodies.
this chemical reaction then reacts with our immune system, depressing it.
like any other chemical reaction....
there is side effects, or adverse reactions.
they are chemically poisioning our body.
(a true but mild form of chemo therapy)

any caring doctor would be sure that the "poison" is justified before prescribing it.

by the way.... i am on both of these drugs. so i am not trying to scare you off of them.

jolynnhughes
07-24-2012, 10:21 AM
After my desperate and somewhat "in your face" call to the rheumy yesterday, I have a new diagnosis. I saw her today, and she decided I have fibromyalgia. I truly believe she was just trying to pacify me. I have joint pain in my fingers, and I have burning in my hands and feet, but I can live with that. It's not THAT bad. On a scale of 1 to 10, it hovers around a 4 or 5 most of the time. I don't have any muscle pain, and I don't have all over body pain. I do have ovewhelming exhaustion, and that's what I can't live with. Isn't the Neurontin going to make that worse? I just don't get it. She also said it might cause weight gain. Well, I certainly can't afford any more of that! I have gained 50 pounds since this time last year -- due primarily to my Hashimoto's. And how am I going to function as a school principal if I'm drugged up on Neurontin?

If this is anything like the Pristiq they gave me last year, I"M OUT! That was the worst experience of my life! Of course, it was for depression which I DID NOT HAVE. I thought I was going to die when I started weaning off it. Is this the same type drug?

I'm supposed to begin with 100 mg per night and increase one pill per week until I'm up to 6 per night. I can't imagine feeling perky and raring to go the next morning after that. Anyone else out there take this? Any thoughts on this new diagnosis? I have an appointment with a new rheumy on Aug. 1st. Still trying to decide if it's worth going to yet another doctor in search of answers. So tired!

jmail
07-24-2012, 08:44 PM
One thing to remember about any autoimmune stuff, is the diffulty in the diagnosis. They don't call it the art of medicine for nothing, and the docs all "practice" it. Some are good at it, some not, and most are in-between. Not only that, but each patient-person is a bit different from the other, and no two people react the same way to similar stimuli or medication, or anything for that matter. When a person is stressed from feeling poorly, it wears on their patience, which is one thing a person really needs (along with a bit of a warped sense of humor). That's not to say that you shouldn't "shop around", as they say. I ran with two rheumies for about 10 years, and had all but given up on them for a few years until I found this last one, and I *think* he's like #6 or 7... I hung on to my 1st pcp where I live now far too long, and it almost cost me my life, from him not finding the Hashimoto's several years earlier. 'Course, at the time, I didn't know what a good doc was. I didn't know any better. Now I do. As to the meds, "doctor's orders" and see what happens. I tried amitriptyline a few years ago, dosed as your doc did your med. Amitriptyline is classified as an anti-depressant, but like most meds, gets used for other things. It took me a few days to get used to the doses, but I did the increases on my days off, and was fine by the time I went back to work after the weekend (for me, that was Wednesdays & Thursdays back then). We were using it for migraines & getting the back muscles to relax enough to do chiropracty (sprelling??) on it. It worked in that regard. Certain side effects did it in on me though, which happens. Just pay attention to things as you go, and write things down if you have to (I have to, 'cause I cain't 'member thangs no mo). Ask the doc questions, get answers - and write them down. As Steve said "my rhuemy is very good to me. he explains everything in basic language, so my lupie brain can comprehend." That's important, as is the doctor's listening to you. But take a slow, deep breath, and exhale slowly.