[KateLynne]

Am I the only one who has really crazy problems with Doctors???

Let me explain... I have RSD in all of my extremities, and I recently went to the eye Dr. (optometrist). I went to get my eyes checked, get new glasses, and I also wanted to tell my eye Dr. that I was seeing floaters.

SO, I went and the eye appt. went well. My prescription had not changed much, but the eye Dr. said that there was an elevated and inflamed nerve in my eye!! I was alarmed and so was my PCP. Well, my eye Dr. told me that he wanted to keep an eye on things ( lol, really! not meant as a joke), and look more into it, because as I have RSD and that is also a nerve problem.

My PCP wanted me to see an ophthalmologist since he could look more into this nerve problem in my eye. I go and he says he sees absolutely nothing wrong with it. He told me that my optometrist could not have seen that, because if he did then he would see it now (and if he did, he would even see it a year later). OKAY. Well, I told him that he should call my optometrist, because he is the one who saw this. He said that he would not call him because he would find out absolutely nothing!!!!!! I was so dumbfounded. WHAT???!!! He really thought I made this all up! Why would I make up that some other eye Dr. said there was nerve inflammation and elevation? Why would I pay to see another eye Dr. if I really made it up? Come on!!

So then he goes on to check out the floaters I have reported seeing for the past few months (which, by the way, came on at the exact same time the pain got AWFUL). He looks at my eyes real well, and he says that "oh, yes the jelly has collapsed in your eye". Well, yeah- my other Dr. says so!! So, I asked him "why did the jelly collapsed?". He says "Well, it didn't.". WHAT???????????????!!!!!!!! You just said it did!

He then goes on and on about how the medications I am on or have been on (Neurontin, percocet, darvocet, lidoderm) COULD cause me to have dry eyes, to have trouble reading, or such!! WHAT? He went on the internet (he said so) and looked up all the meds. I am on to see if they would cause any such side effects. WHY, I don't know! I did not report having trouble with reading or dry eyes. I came because my optometrist said there was something wrong with the nerve in my eye.

I could not get any more out of him... he said that the floaters didn't just appear when the pain got awful, I just started noticing them at that time. OK, I'm sorry, but I did NOT just start noticing them at the time my pain went through the roof. Why would I THEN take the time to notice them when I was dealing with major pain?

Whatever. I know that these floaters started then. They did not come as a side effect to the meds. I'm on... they started before I started any meds (other than motrin, tylenol, aleve)!!

BTW, the floaters did NOT start from old age either, I am young.

Everyone can tell me I'm crazy, I don't know what I'm talking about, and on and on and on... I am NOT crazy, I refuse for Doctors to just excuse me, and tell me I made something up (or at least act like it).


That really isn't the worst of it. I have a Dr. who tells me that I can not look up ANY info about RSD. Yeah- this is my disorder and I cannot even learn about it? I'm the one in pain 24/7, I am the one who is living through this and I might just have to live with it for many years to come. And I cannot even KNOW anything about it?! Yeah. He thinks that RSD is a psychological illness.

Sorry to go on and on. I must not be the only one, right?!



Anyone else have eye problems due to RSD?
Why do so many Drs. think that RSD is a psychological illness?

Please somebody, help me!!

[GalenaFaolan]

You're not the only one with a crazy doc story. I've had some of the worst docs!! Well, anyone who has been or is dealing with work comp know what I mean. Idiots every last one of them. I was accused of "faking" things. Yeah, I can turn my legs and feel dark purple with my mind.

I'd find another opthamologist to see and if possible another doc. How can he justify treating you for something he thinks is all in your head? *rolls eyes* I don't get it why they all think we're freaking psycho or something. I believe that doc needs to go look on the internet and learn about RSD himself. I hope you don't pay any attention to HIS psycho raving. LOLOL

The eye doc, #2, sounds like a right nut case himself. I hope there is another one who can figure out the why of your eye problem and maybe help you somehow. I don't have any eye problems, yet. The only thing that did happen was in the first year with rsd, I went to get my eyes checked and get more contacts. My left eye has always been pretty bad since I was 7 due to a piece of woodchip in my eye. Well, the vision in my left eye is now better than my right!! The right eye is just slighty better than before. I figure if that kept up I'd have perfect eyesight in no time! LOL Alas, the eyes aren't perfect but there's been no more changes so there goes the bright star of getting rsd in the first place.

Hugs,
Karen

[Barb2406]

Kate Lynn,

Welcome to the forum, sorry it has to be because of RSD,

You wouldn't happen to live in PA would you? Your Doctors sound like some

of the ones I have seen since moving back to PA from NV. I had a PM doc tell

me I didn't have RSD, this is after being diagnosed by numerous docs including

Dr. Stanton-Hicks of the Cleveland Clinic. She said I didn't have discoloration,

swelling, or sweating so it couldn't be RSD. However I tried to explain to her

that I did all those symptoms and more until I had the nerves burned in my

back (abalation). I also got SSD on first try and it only took 6 weeks after

being released by WC. All of you that have applied and either been accepted

or been denied know they don't just give out SSD without alot of proof of

illness or disability.

I think you need a new PM doc and possibly a new optometrist, it couldn't

hurt. I agree with the previous post in regard to proper treatment if this doc

thinks you are making up RSD, what kind of treatment could you possibly be

getting?

[Jomar]

goodness - replace those drs that made the off the wall statements.

My eyes do act up when I have a TOS symptom flare- {my neck muscles tighten up}.
My right eye will water, my vision gets a bit blurrier{for reading}-and more floaters too!
I even used to have swallowing & speech and voice problems.
My memory and concentration was very bad at the time too.
My drs didn't know what to make of any of that- but at least they didn't tell me not to search for myself. I would have fired them for sure.

But I know for me those symptoms were due to the RSI & TOS at its worst because as I healed and recuperated those odd problems faded away too.

[dreambeliever128]

We could write a book from the stories that has been told on this forum about Drs. being a**es.

In 5 years I saw at least 100 Drs. before I got all of my diagnoses and the help I needed. I am not exaggerating. I have a list of all of them. I ended up with about 8 that has helped me with all of my problems.

The PM Drs. are jokes in my book. They are out there to help you but they are afraid to give you the meds you need or hand them to you just to get you out of there.

At first I cried and would want to give up and then my PCP would send me out again to another Dr. to help diagnose me. After awhile we just can't seem to take anymore of their attitudes so we tend to just slump down in the floor and cry.

The Drs. you have sound like a**es. Look for new ones and don't give up.

When a Dr. tells you not to look up your illnesses on the internet then he's trying to control how you are being taken care of and they tend to think sometimes that we go on the computer to learn about illnesses to use them to get meds or attention. He is one I would definately dump. Why should we wait for them to take care of what is going on with us when they aren't going to do it anyway. What we learn we can take to another Dr. and ask them for the help we need. When I fell and got hurt my PCP ask me to go out and buy a computer to help diagnose me. He had sent me to so many Drs. and none of them could figure out that I had TOS. I did it with the internet. He and my PA had had only one TOS case in each of their 20 years. It took us 3 years to get me diagnosed. We went through that 2 more times with other medical problems. Now I'm back on the computer trying to figure out this pelvic pain. I don't give up. Before councelling I would have crawled under the bed and died.

Don't give up, keep going to Drs. until you find the one that will help you and stick with helping you. They are out there.

I can't believe the one Dr. didn't believe in RSD. That's the first one I heard that didn't. Usually it's Fibro that they don't think exist. LOL

Do hang in there and keep looking for that right Dr.

By the way, I have eye problems also from the RSD and Fibro. They can be caused by either.

Glad you found us.

Ada

[misreable]

Hi Kate
This is so "scary" I have seen so many Dr's leave crying every time no
way you are alone-I also had a DR.tell me to stay off the internet,the only
time I had blured vision was when I was on Lyrica-(didn't help any way)
just about ready to give up- right now I'm cutting down on vicodin (want to get off) I can't find a place here for PT. for desensatising my whole body, ready to give up DR'S don't lesson any way they have to see some one else in 15 min. UNBELIEVEABLE
Good luck
SUSAN

[eileen15565]

Hi Kate,

I was recently diagnosed with crps 1 and have been searching for a doctor experienced with rsd. It is so frustrating. The doctor I have now looks at me like I have 10 heads when I tell him about my pain. Even though he has experience with rsd. I found a website rsd.org the phone #877-882-7737. The person I spoke to is James Broatch. I told him all my problems and he was so helpful and understanding. I gave him the area that I live and he sent me a list of doctors who work with rsd in my area. I also found a support group on the site. You just put in your state and town and it will show all the support groups in your area. I got some referrals for doctors from the woman who runs the group near my house.
Good luck. I am sorry for your troubles.
Eileen

[LisaM]

Hmmm....let's see....I saw about 15 doctors over the course of about 5 years dealing with TOS and RSD. I KNEW there was soemthing wrong, but since the tests they were running on me all came back normal (cuz they were running the wrong tests) they said I was nuts - it was psychological. The only doctor who DID believe me was my MD...the problem was, he wasn't familiar with treating TOS/RSD. My PT believed me, also, but she wasn't curing me...and had to do PT based on what the doctor who referred me to her told her to treat me for...so she couldnt really treat me for TOS. So, I went from doctor to doctor, who then referred me to specialist after specialist...many of who tried to find "proof" that I had MS, so they'd send me for more MRI's of my brain, trying to find proof of it, cuz htey said my symptoms acted much like MS.

I was on all different types of medications, trying to see which ones worked. I was in PT for neck issues cuz they thought if they could work on my neck, my arm pain/numbness would go away. I went to a (psyiatrist?????) who would just adjust my neck and back every two weeks. He didn't believe in pain meds, though, so I was in horrid pain constantly. I called him one day when I couldn't even get out of bed, I hurt so bad and was crying my eyes out. I couldnt even get in to see him. He said if I hurt that bad, go to the ER.

Believe it or not, I even had a FELLOW TOS/RSD-er call me a "doctor shopper" (or in other words, drug seeker perhaps????) cuz I've been to so many doctors trying to get someone to diagnose me. You want to talk about feeling like crap? Try having someone who is going thru the same thing you are, telling you that you are a doctor shopper! The only reason I went to so many doctors is because I was following the DOCTORS INSTRUCTIONS! They're the ones who were sending me to specialists! Md would send me to a neuro...neuro would send me to a thoracic surgeon....thoracic surgeon would send me to a vascular surgeon...vascular surgeon back to my md cuz they couldn't help me....md would be so convinced it was TOS and not knowing who I should be treated by, he'd send me to a DIFFERENT neuro....who'd start the cycle over agan (of course, starting with more MRI's to check for MS!). And 3 rounds of PT cuz of course, every time a doctor wants to send you to PT, and you tell them you've already been, they said, "Oh, but MY therapist is the BEST!" so they make you go again. AGGGHHHH!!!!

Then the merry go round of med's. I think I've been on almost every single one you can imagine. How do you think I got to the patch! You have to go thru almost every pain med, up the ladder of them til you reach a max, until you get the patch.

Hon...you aren't alone. This is such a stupid disease, and doctors are so confused about it that many times they don't know what the heck they'r looking at. Then when someone elde finally confirms it's what you have, then they suddenly feel for you, and suddenly they know what it is and you aren't nuts anymore. But it's like they didn't wnat to be the ones to diagnose you! Ad so many weird things can happen with RSD that not many doctors can answer our qustions.

My doc told me not to reseach on the intrnet with UNRELIABLE SITES. To stick to TRUSTWORTHY ones...like those of the mayo clinic or the NIMH or whatever it is. Not to just accept things as written in stone unless it's from a reputable site. Maybe that's wht your doctor meant????

Don't worry. We know what you're going thru...so vent here. We know you aren't crazy, aren't doctr shopping, and aren't an addict either. Ad we'll believe you no matter what you say, even when others won't.

[misreable]

Hi LISA
Oh my I 'm going to read this two more times,what in the world are you
just saying all this-you just told my life story-have to read again 4yrs & know
one has believed me I don't even think they lesson including my own family
what state are you in? will get back to you have to read this again make sure
I'm understanding all this.
Many Thanks
SUSAN

[ihtos]

LisaM, you just wrote my story also of the last 12 months minus the RSD. And Jo55 I'm glad to hear about the floaters, blurred vision with the TOS flares. I have an appt with an opthamologist soon. Hopefully its not the Topamax. Katelynn thanks for starting this thread, I don't feel so alone now. Ihtos aka I HATE TOS