Afraid of the Doctor

[jupiterjane]

I know, I know! Afraid of my Doctor! What kind of nonsense is that!? My neurologist quit her practice in Missouri and moved to Florida. She was my neurologist for 3 and 1/2 years.She diagnosed my Parkinson's and found a specialist in St. Louis who diagnosed me with a neuromuscular disease called Cramp Fasciculation Syndrome. en.wikipedia.org/wiki/Cramp...

My new neurologist agreed to monitor both the Parkinson's and the Cramp Fasciculation Syndrome. It took 8 month for my first appointment and my follow up is in January 2013! The muscle cramping and spasms are becoming worse and I am having trouble controlling the pain. My pain is taking over my life. It's a new Doctor, I don't want to be labeled as needy. In the initial visit I ask about pain meds and muscle relaxers for the cramps and he told me that my pain wasn't real and that the pain meds I am on are confusing my brain. He said I need to retrain my brain and lose my addiction to pain meds. I am not nor have I ever been addicted to pain med. The pain is real, the muscle are cramping severely and at this point I can think of nothing but the pain. I cannot make it stop. I am crying because I feel like maybe I'm crazy or stupid or worse yet that I am imagining the pain. If I could just get an appointment, to be able to sit down and really discuss this disease and its effects on my body. I have been struggling with this for weeks now. I can't make the call. This is so stupid! I am a grown woman who is afraid of what other people think about me! Why do I feel this way? Too long a story...

I sound pathetic. Ugh!!

[mrose]

I am so Sorry to Hear this, regarding Your New Doctor. My Husband has Parkingson's Disease and the Movement Specialist Neurologist we have gone to three times, is so intimatating to Us & almost rude ! I should have waited to see the Head Movement Specialist but since the wait was so long many months, we went ahead with his Partner. She didn't even check my Husband's Legs at our January Visit when he had gained over 20 pounds in three months, the next day we were at Our Internists who Diagnosed my Husband with Cellulitis in both Legs and ordered a DVT Test for Blood Clots, Thank God he didn't have any ! Now as We are approaching his next Neurology Visit, I am so Anxious, since I want to call & ask to see the Other Doctor but not sure what his Nurse will say. Our Internist said he can monitor my Husbands Parkinson Meds for Us, Just might do that for a while until we find a New Neurologist closer to Home, we feel comfortable to talk to. Best of Luck with Your Doctors !! Take Care !

[Jeni]

I am so sorry for both of you....but you must find another doctor. You should never be afraid of your doctor. There is someone out there for you so go and find them, DO NOT sit around in pain, keep looking for another dr. If you need help ask someone at your local hospital or something, please do not settle it is to important for you to get help when you need it and be comfortable and happy...life is to short.....let me know if I can help....Jeni in Illinois

[Hidden]

Not Pathetic at all I assure you. We can all find our doctors intimidating at times, but you are the person suffering with the complaint not your doctor.

If you need pain control or are in need of some drug to counteract the spasms insist your Doctor takes notice that is what you are paying them for.

Have you done your own research on the type of drugs that might be used in your particular case?

I often think it is good to do some research you can always relate back to your Doctor.

lots of info about your condition on the net, and the treatments available.

I wish you all the best

oldtyke

[Hidden]

I found this interesting:

Chronic pain is determined by emotions, scientists believe

Emotions may determine why some people are more likely to suffer chronic pain than others, a study has found.

telegraph.co.uk/health/heal...

[Hidden]

Changing doctors changed my life! Keep changing until you find one that will listen to you.

Doctors don't know our bodies and we don't have the medical training. If a doctor will allow us to be a partner in our own care, it makes for a great team.

[etterus]

Do you have access to a pain clinic that includes an anesthesiologist? It's worth a try

[jupiterjane in reply to etterus]

The following is a diary entry I made after my last and final visit to the pain clinic. I was subsequently black listed by the hospital where the pain clinic was. In fact that is why it took so long for me to get an appointment with my new neurologist. At the appointment I could not talk about my experience with the pain management doctor because they were friends.

Pain, Pain Go Away! Jun 01 2011

I have an appointment with my Pain Management doctor and it scares the hell out of me. This is only my 3rd visit with him and the thought of it makes me cry. I really don't know what to expect. I can remember only very little from my first visit,(I have memory problems), and so I scheduled a 2nd visit. At my 2nd visit I was berated, called a drug addict, and basically told I was a piece of crap and that I was getting any pain meds from this doctor. For 30 minutes the doctor and his P.A. hounded on me while I sat in the chair and cried uncontrollably. After the visit, I thought it over,( hard to forget this visit),

I decided the doctor and his P.A. were out of line and I reported them to the hospitals patient advocate. An in house investigation took place and the doctor and his P.A. were suppose to apologize to me. I'm still waiting for that. Long story short, I need pain meds. I tried to go without but my quality of life is suffering severely. The pain is controlling my life. My family physician, my psychologist, my visiting nurse, my hand surgeon all want to know why I am not on pain meds. So here I go back to the doctor, who I have been assigned, to ask for pain meds. I am told I have to stand up for myself, tell the doctor what life has been like living with the pain, the lack of sleep, the irritability, well you get the picture. I just don't think he cares. I know he has never read the reports from the specialist on my rare neuromuscular disease, or even the report from the neurologist who treats my Parkinson's. He just kept referring to my back problems. Yes I have some back problems and the surgery I had on my back reduced my back pain significantly. I tried to talk to him about it but he didn't want to hear any of it. He just wanted to lump me into the group of drug seeking, hard core pain pill sufferers.

I know you're probably wondering why I don't see another pain doctor? Yeah!, I'm kicking myself over that one too. When I reported him, they offered to give me another doc in he same practice but I was feeling all kinds of stupid and said I'd stick with the one I got. What the hell was I thinking!! Now my stomach is in knots, I cry at the drop of a hat, I'm anxious, nauseous, tongue tied and scared.

Man, wouldn't it be awful if I threw up all over him.

I just want something to help make my pain more tolerable so I can be more productive in my everyday life. I have never abused my pain med, I do not frequent the ER, I do not go from doctor to doctor asking for meds, I just want some relief, just a little, even the slightest bit is better than nothing!, Damn!, Here I go again,balling like a little girl. Everybody tells me I'm smart and strong, I can handle this. You know what, today I don't feel so strong, or smart, today I just feel alone and frustrated.

Jupiterjane

So the appointment is over. Result: No pain meds. I waited in the waiting room 2 & 1/2 hours, and then in a patient room for 20 minutes. I did not see the doctor. I saw his P.A. She kept interrupting me while I was trying to explain my pain and its affect on my every day life, with this statement. "You seem to be a little emotional today". "Depression can do this", therefore dismissing my pain. I left the appointment in more pain than when I started, a prescription for an antidepressant and a muscle relaxer and an appointment with a Psychiatrist! Do you think they're trying to tell me something?!

Damn! Damn! Damn! I have no idea what to do and I am still rather emotional!!

The psychiatrist, immediately wrote me a script for pain meds and muscle relaxers. I still see the psychiatrist and he is still prescribing my pain meds and muscle relaxers.

[etterus]

As a healthcare provider for 30 years I know that Pt's get blackballed and it's pathetic. Do you have any options for other providers ? Family to vist for consults?

[olpilot]

I think also it's time to get a new dr, contrary to what they believe they are not gods. I was dx with PD about a year ago, since them I have had a tremedous increase in pain and cramping. I took Aleve for pain and it worked but cause bleeding so I quit, now I don't take much of anything. I asked my primary care about alternatives, making clear I didn't want tylenol or anything with it. I took him 3 days to get back to me and he recommended a tylenol based med. Tylenol never really worked and with all the meds I take anyway I don't need more may cause liver damage type pills The thing that made me mad was the fact the he didn't listen to me at all. Anyway the pain and cramping is very real. I don't like taking any meds but that really is no longer an option, but I don't take pain pills. Usually I can get through ok, but there are times when I, an old school don't let it get to you guy, just can't stand the pain. My arms lock in place with cramps, my feet are turning inwards from cramps. Just getting up from sitting is agony. I see my neuro next week, he has been pretty good so far, young guy, but he does listen. If any dr tells me what I feel is "in my head, not real", or something like that he's fired. I'm not there just for his income, the only reason I go is because I need his help, if he decided he didn't believe me, decides not to help, the there are others out there. This damn PD is bad enough with out being told, it's all in your head. Do they really think we just sit around thinking up complaints to go to them, Find someone who cares, who is willing to do his job. I know how much the cramping pain can be, I hope you can find relief, call a patient advocate in the clinic or dr office. Let them know, my wife has made lots of noise in my favor. It has helped.

[jupiterjane in reply to olpilot]

My Friends,

Thank You so much for all the support, your kind, caring words. Sometimes I just need to say things out loud, so to speak, because it is too hard to talk about these things with those closest to us. I have come to hate doctors. I don't trust them. They just don't care. I am not strong any more, I am tired. Hope has turned to frustration. And I have learned that if you "rock the boat" you just might drown.

[Koko]

Dear One,

IT is very sad but true, there are very few doctors who know anything at all about Parkinson. THat is even true within the Nuerologists population.

I went through at least 6 Neurologists before I met one that was good for me. I know what i wanted so I kept loooking. THE unfortunate thing is that I had to wait three or four months to get in to see each one and by that time my disease had changed etc.

I realize now that no one cares about my health as much as i do. I am solely responsible for my own wwell being. IT is my job to learn as much as I can and get to know my body well. Then when I meet with a doctor I will have the right questions to ask. I too was afrad of these highly knowledgeable people but then I realized I am paying them and I needed to be pro-active and care about living..

Before i went to see each one I sent them a 3 page questionaire and asked that they fill it out becuase I didn't know how long they would spend with me and I wanted all of my questions answered.. This turned out to be a good idea as I could compare their answers and draw conculsions.

One of the doctors didn't like the idea, most of them completed the quewstions before seeing me and one went through all three pages and wrote the answers while I was in his office. He spent 11/2 hours with me. Another doctor sat at his computer and we looked at artilces together so we could learn together. IT was then that i saw for the first time a man who was in this field to learn and to help or cure humanity. HE actually cared about me. IT took a long time and much travel to find such a man, bbut it was worth it.

GOod luck and don't give up. There are good ones out there but you must forge ahead and realize you are worth it! . .

[Thumbpick]

Jane, your experience just makes me comment (AGAIN!): that's why the call it a medical PRACTICE!!

[Lightning94]

Jane, If you come to central Florida, I can tell you who not to go to. Someone mentioned to arm yourself with as much info as you can. I think I know more about Parkinson's than my Movement Disorder specialist Nueroologist does. I have had DBS surgery twice, the 1st time the equipment worked perfect, unfortunatly I developed an infection. The second go was January of this year and as soon as went went in to the tuning specialist I developed falling issues and my speach became slurred and my MDS nuero, who had just seen me two weeks before the operation, says well it has been 10 months since your 1st go, your parkinsons has just progressed. I told him no it hadn't, because I had to come to the 1st tuning session off meds. My speech was fine and other than not being able to move, I wasn't falling into everything. Long story short, because the first time, they opened ne up 4 times to clean and fill with meds on left side and now the skin on my head is shot. The nuerosurgeon sent me to a plastic surgeon and he messed it further. It opened back up and they had to pull the left side out. I woke up in the post-op and I could talk normal and once my meds kicked back in I wasn't falling anymore. Then I told my neurologist I told you so. Needless to say I'm not going back to that group of hackers. I'm going to drive 100 miles north to Gainesville with the excellant group that teaches others to do this. Over the past 3 years I 've made some incredible friends who have gone to the group in Gainseville and have sent others to them and they were able to fix the mess up's of other. So read, read, read, ask others in your general area who they have used and would they recomend him or her. I hope you find someone you can trust and feel comfortable with.

Bill