cassy_g: (fwoom!)
[personal profile] cassy_g
I am sorry for the lack of update yesterday over my appointment with my neurologist, however, I needed a day to simply calm down so that I could write competently about the incompetence of the day.

First, let me back track. On Monday, I went to see my brother-in-law, who is a chiropractor, and he did several of the reflex, neurology, etc. tests that my neurologist did, and some other ones that the neurologist didn't do, and he told me some things that my neurologist didn't mention. For example, my right eye, the one that is bothering me, the pupil isn't contracting properly. That and a couple of other things, and he agreed that it meant something was askew in my central nervous system. We talked about the possibility of me having MS, which was also what my general practitioner had mentioned.

He wanted to go with me to the neurologist's appointment, but unfortunately already had his own patients booked for the same morning. So, I told him I would fill out whatever paperwork I needed to so that they could talk to him directly.

My condition also seems to be getting worse - not quickly worse, but definitely not better. I now have numbness in my face, primarily on my right side, along my forehead, nose, cheek, and chin out towards my ear. And by numbness, I mean I can't feel light touches and harder or sharp ones feel like pressure instead of sharp. I noticed it when I put my glasses on for something on Monday I think, so I don't know exactly when that happened, maybe that day or before? In any case, it's definitely not right. And I am getting weaker in my right arm. I can barely operate a track ball, and I think I dropped it about ten times on Sunday. Not to mention just how tired I am all the time - and I mean bone tired, even after sleeping 8-10 hours in a row.

Wednesday evening was when I actually for the first time started to fret, if only a little, over my appointment on Thursday. I guess it was just an anxiousness that goes with knowing there's something wrong with you, and being afraid of hearing what that something is. Consequentially, I slept, but woke up several times during the night.

Thursday morning comes, and I get up, and dressed, and [livejournal.com profile] astralfire drives me to my appointment (it's been pretty safely determined that I shouldn't be driving especially during the hotter parts of the day when I am likely to feel worse). We get there well on time (if not a little early), and sign in, etc.

We get called back and the nurse takes my blood pressure, asks about how I am feeling, etc. then says that the doctor will be in shortly and leaves. AN HOUR later, this Physician's Assistant walks in and thanks me for waiting so patiently, and tells me that the doctor is looking at my MRIs now, but he doesn't think he sees any lesions on the MRI films. And that I should be happy because she knows that there's nothing wrong with me physically to be causing these symptoms, and that I positively can not have MS. She then asks me all the same questions the doctor had asked me a week and a half ago, and does all the same tests, and then begins to ask me if I am under any extra stress, or feeling depressed, or having crying spells. And she proceeds to continue to ask me this no less than ten times during the course of speaking with me. Then she leaves and comes back about 30 minutes later, and proceeds to tell me that she thinks I might have a slipped disk in my neck (I really suspect that my chiropractor brother-in-law would recognize something like this), or maybe I simply have a migraine (which I have had migraines off and on most of my life, and I happen to know very acutely when I am suffering from one), and I really should see an ophthalmologist to check out "that problem with my eye". Then she left again.

During all of this she's being very condescending, and treating me like I am a simpleton, and right in my face. [livejournal.com profile] astralfire tried more than once to say something to her, and she just cut him off and dismissed him. And she definitely wasn't listening to anyone.

A little while, maybe 10 or 15 minutes later, the student doctor that had been with her came back to see us and said we could go. She was standing by the check out center and said that she wanted me to have some blood tests "just in case". They included me having my thyroid checked, and testing me for lupus, Lyme's disease, and clotting disorders (which, HELLO, I have a history of pulmonary emboli, of course I have clotting issues).

She then says, "Oh, you are self pay?" And I tell her that's correct. Then she says, "Oh, well maybe we will put off this neck X-ray then." She then proceeds to lecture me on how I should go out right now and get health insurance. Because, you know, that didn't ever occur to me. Never mind that I didn't go to a doctor for almost a month when I first got sick because I was trying to find a place that would first of all, insure me, and second of all, that I could afford. Eventually, I got so ill, that I simply had to go see a doctor, insurance or not.

Then she wrote me a prescription for a drug called Indocin, which is like a glorified aspirin (normal dosage of it is similar to 600 mg of aspirin as far as the way your body responds to it), and it is used primarily to treat rheumatoid arthritis. However, in the list of common side effects are: migraines, blurred/double vision, dizziness and vertigo, (and my personal favorite) worsening of neurological symptoms such as epilepsy, Parkinson's, and psychiatric disorders. And, you know, if I wasn't feeling better in say, 3-4 weeks, I should call them.

So, let me get this straight, she wants to treat a "migraine" with a drug that is known to cause migraines!? Please file that under "What The FUCK!?"

The doctor never came in, and if I hadn't seen a glimpse of him through the glass when I first arrived, I would have suspected he wasn't there at all.

We left (after paying almost $100 for this visit), and I called my brother-in-law, by which time I was in tears. He said to go ahead and have the blood tests, that they couldn't hurt, and it would be good to have those things in my files as having been ruled out. And he would call and find out what the doctor had to say.

After some annoyances with the lab (the first one we went to said they couldn't do "self-pay", and sent us to another location, which was actually closer to our house, but still a bit of a pain to be out in the hot part of the day so long). It was almost 4:30 pm when we finally got home after having left at 9:00 am.

My brother-in-law called back and spoke to me for a while, and then to [livejournal.com profile] astralfire. He said that the doctor wasn't there, but he would try again this morning to talk directly to him. He said there were some inconsistencies in what he himself had found when he examined me on Monday, what the doctor had told me previously, and what the nurse read to him over the phone when he called the office. He said it was clear to him that this PA had simply decide that there wasn't anything wrong, and written me off with a pat-on-the-head prescription.

My brother-in-law is going to make some calls this morning and see if he can find me a neurologist that will listen to me. In the mean time, he's also going to contact a chiropractor friend of his that lives closer to me than he does (my brother-in-law lives about 45-50 miles from my house, and it's kind of hard for me to get down there to see him with how I am currently feeling). This friend's mom is a licensed nutritionist, and I am going to talk to her too. No one in my family (and by family I mean extended family, ie, my in-laws) thinks the chiropractor or nutritionist can "cure" me, but the hope is that they can make me feel better while I am in limbo.

Now, I am left feeling utterly ... I think lost is the right word for it. Please, believe me when I say that I in no way, shape, or form want to have MS. But, I truly believe that when it acts like a duck, looks like a duck, and quacks like a duck, it probably is a duck. And if it isn't a duck, then I just want to know what it is.

I really do not know what to do, and that's not really like me - I am usually very good at crisis management, but just add that to the list of things that I can't seem to manage any more. And I am tired of feeling like I have to defend myself, and say, you know, I realize I might look mostly ok on the outside, but something is really, truly, seriously wrong with me. I don't know what it is yet, but my body is really broken at the moment.

All I can say is, please bare with me, I still don't know what the hell is wrong.

if it looks like a duck......

Date: 2007-07-06 01:07 pm (UTC)
From: [identity profile] freak2760.livejournal.com
No one wants MS. Mel thought it was the end of her world when she found out that she had MS, and at times she still thinks that way, but somehow she's put one foot in front of the other ever since.

I think you need a new doctor, and the PA needs a beating, quick and swift hopefully ending her life.

This is Mel's email Sweet_song@hotmail.com email her and ask her all the questions you want and she will be happy to help out. If you want, check out Dr. John English at the MS Center. He's been very helpful what with finding out whats going on when it comes to check-ups and finding out information. Yes, Mel deals a lot with the PA there but she, at least in my opinion and dealings with her, won't treat you like a child.

Re: if it looks like a duck......

Date: 2007-07-06 01:32 pm (UTC)
From: [identity profile] dire-epiphany.livejournal.com
I have nothing against Physician Assistants in general, just this one. She was absolutely horrible, and should never be allowed to talk to patients in my opinion.

Is that the MS Center of Atlanta at the Palisades Building downtown? When I calmed down last night and was looking around for a doctor that could at least give me a second opinion, if nothing else, I ran across their offices.

I wasn't sure if I could make an appointment with them since I am not sure that's what's wrong with me, but since you know them and have worked with them (obviously, with Mel), I will give them a call this morning and talk to them about it.

Let Mel know that she will likely have an email sometime this morning with about a million things in it.

And I really appreciate both of you being here and being so helpful.

Date: 2007-07-06 02:19 pm (UTC)
From: [identity profile] darkfirewolfe.livejournal.com
wow - I am always so underwhelmed by the quality of lots of medical personnel in our country.

I hear your frustration and your sense of being lost. It's terrifying not to know what it wrong.

I hope that your brother's connections and another (more sensitive) doctor and the tests shed some light on things for you

::hugs::

Re: if it looks like a duck......

Date: 2007-07-06 03:23 pm (UTC)
From: [identity profile] freak2760.livejournal.com
"Is that the MS Center of Atlanta at the Palisades Building downtown? When I calmed down last night and was looking around for a doctor that could at least give me a second opinion, if nothing else, I ran across their offices.

I wasn't sure if I could make an appointment with them since I am not sure that's what's wrong with me, but since you know them and have worked with them (obviously, with Mel), I will give them a call this morning and talk to them about it."


First off, yes, its right off of Northside Pkwy down the road from OK Cafe.
Mel usually makes the appointments, and she doesn't really have a problem getting an appointment to see the PA. I hope everything turns out for the best please keep me posted and if you need any help shoot me or Mel an email and I'll see what can be done.

Date: 2007-07-06 03:45 pm (UTC)
From: [identity profile] pleroma.livejournal.com
Some of what you've described sounds like what my wife would say about her chronic fatigue syndrome and fibromyalgia.

She has been able to conquer it somewhat thanks to eating well, exercise, and massages.

Might not be what you are have, but it is worth looking into. Hope things get better!

If it acts like a duck......

Date: 2007-07-06 05:58 pm (UTC)
From: [identity profile] evil-army-toy.livejournal.com
and looks like a duck and quacks like a duck.....

it could be a furry also.
LOL

No excuse for treatment like that!

Date: 2007-07-07 04:09 am (UTC)
From: [identity profile] raven1ady.livejournal.com
If it was me, I would write/email the doctor & let him know that you did not pay to have his PA pat you on the head, tell you there is nothing wrong with you (when clearly there is) & give you a lollipop!

Now I'm not a doctor, but in reading your description of your systems, it sounds a lot like the systems someone I know has (especially the worsening of systems when it's hotter & the extreme fatique & muscle weakness). She has Myasthenia Gravis. It's not a very well know condition & it took over 2 years of going from doctor to doctor to get correctly diagnosised as even many nuerologist are not familar with it. Serveral doctors had told her she had MS (because of the muscle weakness) even though all the lab test for MS where negative. I really think you should check it out & ask whatever doctor you end up seeing next about it.

Here are some links with info about Myasthenia Gravis:

http://www.ninds.nih.gov/disorders/myasthenia_gravis/detail_myasthenia_gravis.htm

http://www.myasthenia.org



Ducks

Date: 2007-07-08 05:53 am (UTC)
From: [identity profile] pink-pixie-5.livejournal.com
OK, so do GET A SECOND opinion... that PA was NOT a doctor- the deal with no insurance really irritates me! They County patted me on the head when I waited 8 long painful hours trying to get mom seen- to be turned away!!
I am sooo glad you have family in the med field that can help connect you to the second opinion-
Please keep updating- I am worried and concerned for you dear sister, and saying prayers for quick answers........
Tell me what I can do- thousand miles away- but still wanting to help!
Much love to you and yours!
Ruth
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