View Full Version : really frustrated...

08-21-2009, 08:50 AM
Hey everyone, hope you are all doing well! I had an appointment with a new Rheumy on Aug. 3rd and it SUCKED! My D-Bag Dr. sent him a 3 page letter about me before I got there. He walked in the room, asked if I had any questions then handed my a bunch of papers on FM and a script for Neurontin and told me to come back in 6 months! He didn't even do any type of exam. I was so disappointed. He said I have Fibro Myalgia (sp) and Raynaud's. He read that I'm an addict then did what every other Dr. has - NOTHING. I don't get it, addicts can't be in pain? I asked him about the swelling in my hands and wrists and he said "well they're not swollen now". WTF?! I told him about the swollen lymph nodes in my head and how I had 1 removed at age 12 and he didn't even look at it! I am trying to stay positive but it is so hard. Also he wants me to go up to 4800 mg. of Neurontin daily - is that a normal dose? Everything I've read says not to exceed 1800 mg. daily. I am becoming such an angry miserable person. I can't stand it. I am just so tired of always hurting. So that's that, I just thought I'd give an update on my situation. I go back and see him in February. Thanks in advance for all your support! You guys are great!

dassar RN
08-21-2009, 09:30 AM
Please keep hope alive!!!!, it is unfortunate that these doctors do what they do but you have to keep trying. I suffered for 11 years before being diagnosed with lupus. I was even told it was all in my head!!!

One of the sad things with health care professionals is that they judge people's pain level. As a RN, my belief is that if a patient says they are in pain you cannot feel the pain for that person!!! I would try seeing another Dr. independent of that Dr. you saw.

Please don't give up, you know what you are going through. If you ever need the support you are at the right place. Feel free to vent!!

Dassar RN:yes:

08-21-2009, 09:35 AM
Hi Lizza,

I'm sorry you had such a bad experience with the rheumo. They seem to do as little as humanly possible. I started taking Neurontin about two weeks ago after a bout of Trigeminal Neuralgia. Right now I take 300mg 3 times a day. My Neurologist mentioned that he will be increasing the dosage but did not say to how much. I assume I'll learn that at my next appointment, which is next week. 4800mg seems like alot, but I'm no Doctor. I'd say get a second opinion, but that could take an awfully long time. I wonder if anyone else here has experience with Neurontin?


PS- There's a snake, and a Rheumotologist, both run over in the middle of the road. What's the difference between the two?

The snake has skid marks leading up to it.


dassar RN
08-21-2009, 09:38 AM
I have taken neurontin and it was NEVER that high in dosage. I will have to look it up in my PDR. I agree that she should get a second opinion.


08-21-2009, 09:43 AM
I have taken neurontin and it was NEVER that high in dosage. I will have to look it up in my PDR. I agree that she should get a second opinion.


Thanks, you gotta love nurses!

08-22-2009, 04:08 PM

I'm really sorry you had this experience, I know we've all been there, but it still sucks! I was also diagnosed with fm and raynaulds and was prescribed neurontin to treat it. My dr (the really good gp I have, not a rheumy because he sucked) said that 3500 mg is the max for neurontin, but it was too expensive for me to take and wasn't helping as well as it should have and I just got on a new medicine back in May (amitryptiline sp?) and it works WONDERS...and it is on the wal-mart $4 prescription list. You could try it. 4800 does sound like a lot, and if you don't think it's a good idea to go that high, then you should probably get a second opinion. I hope this helps, and I really hope you get some relief soon!

08-22-2009, 06:18 PM
Didn't this guy at least order blood tests? I'm surprised that he just based his diagnosis on what the PCP wrote. What was the use of even being referred to him? How can he even give his opinion without blood tests?
I have a great rheumy (2nd try) and this kind of treatment really burns me!

Angel Oliver
08-23-2009, 02:54 AM
Oh my heart goes out to you.I wish you could get another appointment with a different rheumi.Maybe call the rheumi and ask that you see him sooner as your pain is much worse than he imagines.
I understand your frustration.Ive never had my rheumi examine me either,lots of yawns and words that dont make sense also.
Im thinking of you,but keep fighting.We will support you.


08-23-2009, 07:01 AM
Sorry that you had such an awful experience. You should definately see someone else. If he can't take the time to examine you then I wouldn't waste my time! :no:

The 4800mg really does seem like a extremely high dose. Did you check with the pharmacist or your GP? I would be hesitant to be taking that much without checking!

Keep positive and I hope that you find another rheumatologist that will look at you completely! Remember many of us have had to go to multiple rheums before we found one we liked. I'm on my second one and he doesn't have the greatest bedside manner but he is a very smart man and that keeps me coming back!

08-24-2009, 08:05 AM
No he ordered NO blood tests. I asked him about my 2 positive ANAs (1:320 & 1:40) and all he said was "oh I've seen much higher". Why the hell do I care what you've seen?! Why do I have 2 positives? He was my second try and I was putting so much faith into him. I feel really let down. I need to get a new PCP then get a referral to someone else. That is the only way my past issues will not come into play. Also I have been so tired lately (like passing out on the couch out of the blue) could this be from the Neurontin I am taking at night? I am on 600mg. currently. I also got this awful rash on my legs, chest & stomach - it isn't like the sun rash I normally get and I read that Neurontin can cause mild skin rashes. So what will make it go away? It is so itchy! I've been using Calamine lotion and it isn't doing much. Thanks for all the advice, I will call my pharmacist and find out about the 4800 mgs. I go up by 200mg. every 2 weeks so I won't be on that high for a few months. Again thanks for everything!!

08-24-2009, 08:29 AM
hi lizza,

i am so sorry about your 2nd dud for a rheumy....it took me 3 tries before i found the one that i have had for 13 years now....i hope you don't have to get a new pcp before you get a new rheumy....you might want to call your pcp's nurse, explain to her what happened at the rheumy, tell her that you think the drs. 3 page letter about your PAST addiction problems caused him to have some pre conceptions, and ask her to please help you. I have found that the drs. nurses are sometimes the most compassionate and helpful.

I once went to a new pcp and she , without any reason, stated to me that she does not prescribe narcotics....i was not there for a prescription from her. I thought about changing drs., but i decided to first talk to her nurse....everything got handled, and now my new pcp is a great team member.

i hope something happens very soon that enables you to be treated with the respect that you deserve.

08-24-2009, 08:32 AM
Lizzie, I am so sorry to hear that your doctors have absolutely NO BEDSIDE MANNER. First of all, how can a doctor diagnose you solely based on the paperwork sent from your former doctor? Second, you need to report this doctor because he is prejudiced against you due to your "addiction". I bet he will try to get paid for your visit to you. No matter what a doctor thinks about a patient, he/she took the hypocritic oath and he/she is supposed to treat you with respect and treat you like they would treat any non-addict. Third, wouldn't that extremely high dosage of medicine keep you "out-of-it", rendering you addicted? Please, even though you are tired of the oaky doke, try to find another doctor who does not know your previous doctors. And remember, if you can, report this doctor and his actions. You have feelings too.
God Bless You.
"If you change the way you look at things, the things you look at change". This quote is from Fred Dyer and I use it a lot because it makes sense.:wacko:

08-24-2009, 12:20 PM
Hi Lizza. You have a lovely name... and you have crappy doctors. I wouldn't go back to see either of them. That's a great decision! I applaud it!!!!

I had a doc that put me on drugs for my pain that made my pain worse...and on more than one occasion. A few hours after I tried one pain med, I was at the ER in agony requesting pain control. Heck if I know why and neither did the doctor. He just shrugged those stupid shoulders and blamed it on the disease that's so hard to manage...the disease that I haven't been dxed with yet! Don't ya'll love how they'll say you have something but you don't! :wacko:

You need to see real doctors about your very real pain. Try and see if there are reviews on doctors in your area. Sometimes there's nothing and sometimes there are some reviews that can help guide you in this decision ...which often feels like gambling...roll the dice and see if the next one is worth a hoot. But sometimes there are reviews on doctors that have helped me.

Rob, I love the rheumy/snake joke!!!!

08-24-2009, 12:30 PM
Your new rheumy sounds like a real jerk!!!

08-24-2009, 12:49 PM

Just a word on addiction. The fact that you are honest, and up front about your problems with addiction, is something to be admired, not frowned upon. I can understand everyday people with no knowledge of the nature of addiction, not understanding it. But a person in the medical community who SHOULD know better, should not be using this against you in any way, shape, or form. I don't care if it's a homeless addict seeking his/her next fix on the street, or someone who ends up addicted to prescription meds after having them prescribed after an accident. That person needs help and deserves to be treated with respect and concern for their well being.


08-24-2009, 03:50 PM
I am so sorry love that this is happening to you. I went through three doctors until I found the one I loved and stayed with until I didn't have insurance anymore. It broke my heart leaving that practice and count down the days until I can return. Keep your head up and remember you are your own advocate. You will know when you have bad care and when you have good care and you should always listen to your gut when it tells you to get another opinion. Just call and get in to see another one.

I agree with Rob, I admire you for your honesty. You are in pain and you do need some help to deal with. It is that black and white. They need to work with you and your concerns and reservations about certain meds.

Have you ever thought of going to see a pain management specialist?????? I think one of those doctors may be able to help you get through the every day pain and hopefully can make you more comfortable.

Hang in there and don't give up. We are all here for you and to listen when you are struggling. I am sending you lots of healing thoughts and gentle hugs this afternoon :hug:

08-25-2009, 05:37 PM
No, Lizza I wouldnt go back to see the d-bag, he sounds like a poophead too!!!! You need someone who will at least listen to you. I think you should find another doctor, and I would hold out on the high dosage of neurontin until I get a second opinion. Also, Lizza starrt taking pictures of yourself when you're swollen or something doesnt look right and whip those babies out when you go to your appointment. I hate when I got to the doctor an I tell them something was wrong and its not showing the day of your appointment. So I keep pictures. They work. I hope you get answers soon and I hope you feel better hon.


08-26-2009, 06:25 PM
Lizza...he sounds like he can't be bothered..been there... done that, can you go for another opinion? Also, be sure to tell your GP what a d-bag he was and hopefully no one else will be subjected to that type of treatment. I too had a few losers but my GP thankfully is intelligent and willing to listen. One Rheumy told me my mom 'could not have had rheumatoid arthritis because she was not on arthritis meds'!!! What the hell is that...my GP almost hit the roof when I told him that one....it is soooo frustrating. Follow your gut instinct. Hang in there.

09-21-2009, 12:04 PM
Thanks guys, yeah now it has been a month since I called his office telling him I was having an allergic reaction to the Neurontin so he called in an AD (Nortriptyline). I called asking what made this anti depressant different from the others I have already tried. I called 5 times and emailed with no response. Then finally a week ago Friday I got a call back at 4:50pm and a message saying "I got your messages but you never left a question so I can't answer it". WTF! I left the same question every time I called! So of course I called back and left a not so nice message with my question and guess what - NO CALL BACK! I went to Myrtle Beach with my family last week and it totally slipped my mind that I was waiting for them to call me back. So I am done with that office but I am going to call and let them know they suck. I want to report them to the better business bureau. Do you guys think I should or should I just leave it alone? I am so angry at the whole situation! I am no farther ahead now than I was a year ago! Thanks for listening!

09-21-2009, 12:14 PM
What would bother me is the fact that I would be labeled an "addict". To be maligned in such a way would really offend me. These Drs. have so much power over patients, it unbelievable and scary. I am sorry you have been let down by the medical establishment again.

09-24-2009, 12:34 PM
4800 mg of Neurontin is wayyy too much. Plus, I have found in my case that after a couple of weeks taking it that it stops working. But then again, most "pain" meds seem to have the same effect. The only thing that consistently works for me are opiates, which I can't take during the day because I need to drive and work. :p

09-24-2009, 05:53 PM
lizza sorry you were treated that way have had similar experiences with doctors last year when i first got ill i ended up in hospital that doctor told me it was in my head and i had drug seeking tendancies it took 5months in hospital and numerous tests they realeased me it was my gp who suspected what was wrong and did the tests which confirmed lupus then i seen rheumi who also agreed lucky i have good rheumi but that hospital doctors records have followed me with other specialist i had appointment with neurologist 2 weeks ago and he referred to her records because all hospitals are connected here and the know one another he just told me he could not help me even though i was suffering headaches and electric shocks down my legs he said it was because i was to fat and needed councelling he told me just to leave and go home he didn,t want to see me again just one doctors wrong diagnoses has a habit of following you forever i told my gp she was disgusted on how he treated me i also plan on telling my rhuemi just because they have medical degrees they think there gods they forget to be human sometimes. if you do not trust this one find another until you get the treatment you deserve hang in there eventually you will find someone to listen to you. hugs kim l