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Posted 10/13/2007 2:56 AM (GMT 0)
I don't know why I never bothered to obtain my Rheumatologist records before but recently I was finally able to get copies of them.

It is incredible as to what this guy wrote.

I never knew I had an anxiety disorder but according to this doctor I do. I also have Fibromyalgia and, Pleurisy.

Unbelievable. Now I do believe that I might have Fibro but there is no way I have an anxiety problem or for that matter Pleurisy. LOL

At one time I went to the ER because my pain levels were through the roof and nothing was helping. I happened to meet a very nice doc there who thought I would benefit from Valium due to the fact that I have a herniated C3-C4 and my muscles were flipping out. Needless to say it worked very well as a muscle relaxant.

When my Rheumie found out about this he immediately told me I should go see a Psychiatrist ??? Now after reading my records I see why. To be honest I am a upset over it. I don't like my words twisted around.

As far as the Pleurisy goes I haven't the foggiest notion as to where that came from. I have never seen it in any of my other records.

I definitely think this guy was not worth my time and money. It's a good thing I am no longer seeing him.

Post Edited (quahog) : 10/17/2007 11:43:37 PM (GMT-6)

Posted 10/13/2007 3:27 PM (GMT 0)
Wow, If you'd had pleurisy you would've known it, Geezee what a lousy doctor to do that to you!!! I'm so glad your going to a new doctor.
Everyone should get copies of their medical records from time to time to make sure the stuff in them is accurate and up to date.......
Hope you get better treatment from your new doctor, quahog you deserve it.
Lots of well wishes to you quahog and soft hugz too.....
Posted 10/15/2007 2:18 AM (GMT 0)
In order to diagnose fibro, they need to rule out alot of other things first. Did he in fact check for tenderpoints? Did you discuss a history of chronic pain and fatigue or the many other symptoms that go along with this syndrome? It's not to say you don't have it, that is actually quite possible, but was he going to keep this all a secret? What you're saying he wrote is a bit strange, to say the least.

If you suspect you may have fibro, search out info on symptoms and maybe even keep a pain diary. Seek out another rheumatologist that treats fibro (ask before making an appointment and inquire also how the dr. treats it) There are medications that help and possibly other treatments that may be useful. It might be worth your time to look into this especially if you have alot of unexplained pain and have test results that usually come back negative. FMS symptoms often mimic other illnesses. I hope you don't have it but for some people that spend so much time, energy and money trying to figure out what is wrong with them, to get a diagnosis is a relief.
Posted 10/18/2007 5:42 AM (GMT 0)
Thanks Gramps.

This Rheumatologist did check my tender points and I had 11 out of 18. So according to him I have FMS. There are others tests that he did as well but even still I don't agree with the Diagnosis.

If I remember correctly he asked me about the Valium. He had obtained copies of my ER records. I have also looked at them and they say I was given the Valium as a muscle relaxant, So, how he came to the conclusion I was taking them for anxiety is beyond me.

This guy was something else though. I had a bone scan when I first saw him and he told me I had Inflammatory Arthritis. When I asked him again a few months later he told me the scan was normal. I also told him I had tried Cymbalta, Prozac, Paxil and the anti seizure medications with horrible results. I would not put my self through that again. He agreed and said we could try something else.

Later on after the Fibro Dx came up he told me he wanted me to try the Cymbalta or Prozac. He completely ignored what I had told him before. Then after I said no he told me that he could no longer help.

UNBELIEVABLE


What happened to the Oath these people have taken? Where's the compassion ? The caring or the kindness ?

I may not be a physician but I am a former Paramedic and wonder if I have more medical knowledge than some of these jokers. I think this is why I would love to go to medical school. I would treat my patients with a lot more respect and I certainly listen to them. Something that most doctors are unable to do these days.

Thanks again everyone

Post Edited (quahog) : 10/17/2007 11:45:59 PM (GMT-6)

Posted 10/18/2007 8:59 AM (GMT 0)
Would you be willing to say which Rheumy this was, here in Maine? I am currently seeking a Rheumatologist and given the bizarre nature of my Reactive Arthralgia (AKA Reiter Syndrome, a cross between rheumatoid arthritis and severe fibromyalgia one might say, with a bunch of other nasty symptoms thrown in).....it's a very tricky matter to find the right one around here.

Of course, I'm also struggling with the search for a pain clinic/specialist. I'm already taking as much medication (Oxycodone CR, Tevas until the generic contract runs out and we all go back to Purdue brand Oxycontin) as MaineCare will cover when prescribed by a general doc.....and I know my excellent but still-only-human doc would like to be relieved of the burden of managing my narcotic pain meds.

I'm just so terrified to be putting my already incredibly fragile, under-siege quality of life in the hands of new specialists that I don't know. Any help or guidance, even if it's just who NOT to see, would be tremendously appreciated. If there's anything you can't say on HealingWell and/or the open Internet, feel free to send me a private message and we'll work out some direct contact (email or something).

Thanks, and best of luck in your own struggles Quahog. I know how hard it has been for you......I am fighting to be a decent father to my children and a husband to my wife, and the more we chronic pain/auto-immune sufferers band together around here in Northern New England, the more we may be able to help one another win these battles we're all fighting.....
Posted 10/18/2007 9:24 AM (GMT 0)
Quahog....actually, just the layman's research that I have done since I fell ill with my initial series of "superbug" Staph infections which triggered all this other stuff, has caused me to know all sorts of stuff that virtually no doctor has a clue about.

Certainly not any in this region of the USA, nor most other places around the globe. It's beyond tragic.

There need to be true chronic pain specialists -- not this cop-out "pain clinic" BS where they try to consume your time with useless crap so that you don't have enough time to advocate for your real needs.....which they KNOW they can't meet! At least not on the terms they want to do business on.

And that's all it is for most of these idiots -- a business. Compassion doesn't enter it to it; at least not if it requires any real work or any real risk to the doctor in terms of liability or financial loss. Boo hoo, you might not be able to afford that yacht because you saved a father and husband with small children from suicide due to intolerable agony?! Shucks, I'd take that trade in an instant personally. But it seems that a lot of people aren't these days.

Alas, I know I'm preaching to the choir but I'm at a big big turning point in my war with chronic pain/illness. I have to enter a new phase of the relationship with my primary doc, who is a saint but is only one man and can't control MaineCare's policies which are what is really getting in the way of my care......I have to find a rheumatologist who will take on a case as weird as mine, and a pain mgmt. specialist who isn't afraid of a case requiring as much pain medication as mine.

With our second child on the way early next year......I have to be as functional as possible and that means not wasting all my time coping with the slings and arrows of the specialist-finding process. Plus, my general doc is understandably eager to get on with things, and I've dragged my heels long enough. I need to start seeing as many of the following as possible, as soon as possible:

*Rheumatologist (preferably not afraid of "fibro-like" weird/poorly understood conditions)
*Pain Clinic/Specialist (must be willing to do whatever it takes to enable maximum quality of life without lots of cop-outs such as: injections, implants, surgery, etc -- I already have world-class pain coping skills and am well trained in multiple techniques; I don't need help in those areas, or physical therapy.)
*"Pain Psychologist" -- e.g. someone with primary skills in helping people cope with the mental, emotional and lifetstyle etc. stresses that go along with chronic pain
*Massage therapist (My wife is one of the best massage therapists in the world but she's only one person and I need basically 24/7 massage to cope with my severe myalgias......I hope I can find a way to get MaineCare to pay for at least some massage......)
*Dermatologist

BTW, Quahog: my primary is a great guy, very smart and much better in many ways than most docs.....but even he tends to forget significant things we've talked about in the past and sort of makes me feel rushed (after all he only gets about 1/3 as much from my MaineCare coverage as he does from regular insurance).....but he has been a godsend in so many other ways.
Posted 10/19/2007 4:45 AM (GMT 0)
Hi Exit,

Thanks for the reply. I no longer see the Rheumatologist and when I was seeing him he wasn't the one Rx'ing my pain meds. At first I thought the guy was great but later on as I've said things became a little strange with him.

The real problem I am having is with my new PCP she is completely clueless. I desperately need a new primary doctor. I went to her once dealing with some bad nausea. I still have it. I asked if she would Rx some medication for it and she gave me a song and dance and did nothing. In fact she has never done anything for me except refer me to other doctors who were also less then stellar.

Is it me? or is it the state of Maine? because I am at a loss as to what's causing my bad luck with doctors.

There is some good news though. I go to a decent pain clinic in the Lewiston/Auburn area and am lucky enough that the doctor there Rx's my Oxycontin. He's a good guy but doesn't always listen to me. There is a Nurse Practitioner who is ABSOLUTELY wonderful. She listens but she also doesn't think my neck is the cause of all this pain and numbness. Maybe she is right but it is the cause of some and with these new symptoms I need my neck to be re-assessed. There is a stabbing shooting pain in my neck, it radiates into my shoulders and arms. Sometimes it effects my hands. My face is numb, my nose is numb and my upper teeth become numb. They also throb so bad at times. It is bad and it's made worse when I move my head, lay down in bed or otherwise put pressure on my neck. If I even push on my cervical spine it causes pain and numbness. There are pops and snaps with pain and numbness. I am so tired of being told it is not my neck causing this. Now I don't know if the C3-C4 disc herniation is to blame but there is something going on in there. I need someone to perform another MRI, CT scan with contrast, I hate the idea but a myelogram or discogram maybe in order but I cringe at the thought because they are so painful. My NP and PM doc won't order it. There is something there I know it but my last image studies according to my doctors are normal sans the disc herniation. Something has to be done. Now my pcp wants me to stop the pain meds. The only thing that helps without offering any other alternative. She doesn't even Rx them but thinks she can tell me to stop them. She told me that they could be making my pain worse. I just can't accept that. She has no idea. If they want me to stop the meds fine but either fix my neck or find me another medication that work as well.

I just don't know anymore. ????

You mentioned that your doctor is a good guy if you don't mind I would love to know who you are seeing. If you don't mind I'd love for you to email me so we can talk further. just click on my user name to get my email.

Anyways thanks for your kind replies and support.

Post Edited (quahog) : 10/18/2007 10:48:20 PM (GMT-6)

Posted 10/19/2007 7:08 AM (GMT 0)
Hey Quahog, I just wanted to make a suggestion - you might see if you can bypass the procedures by seeing an osteopathic physician (DO) who specializes in neuromuscular medicine.  I'm not sure if you've heard my spiel about this, but these are physicians who are absolute experts on the spine and its associated neuromuscular connections.  Sometimes all the best scans in the world can't really pinpoint what's going on there, but a trained physician's hands can.  DOs have full practice rights and can go the procedural/medication route when necessary, but they have some extra knowledge that, in my opinion, tends to be underutilized.  You'd make a very likely candidate for osteopathic treatment!  Let me know if you want more info. 
Posted 10/19/2007 1:37 PM (GMT 0)
Quahog, I hope you find a good doctor soon! Have you done a google search on webmd? just a thought...... Lots of well wishes to you, makes me mad that clueless doctors are allowed to practice medicine! Geezee, how do they help? Well keep us posted as to how you are doing okay, we all care and angels are with you................
Posted 10/20/2007 5:46 AM (GMT 0)

Exit I forgot to mention the name of the doctor I was seeing in my last post. 

Then again I don't know if this is something I am allowed to do.   I will say that he worked in Lewistion at Central Maine Rheumatology.

As far as seeing a Doctor of Osteopathy.   My pain doctor is a DO so yes I am seeing one but he has never pin pointed my problem.    I do think he suspects I might have discogenic pain but I can't say.   He did perform an EMG study on me but not in any area in which I hurt.  It of course did not show anything.   

Now things are Worse.   I have another appointment with him and the nurse practioner on November 5th.   I want to get my point across about how my neck, shoulders, face, is not acceptable but I have been trying for years and it hasn't helped.   The reason I stay with them is because they are in all actuality very nice and RX pain meds for which no one else has.  

Of course I don't want the meds I want my neck fixed if possible or a diagnosis that says my neck, cervical spine, is causing some of my problems.  I know there is more going on but my neck is a priority.  

Does anyone have any ideas on how I get them to listen to me about all these symptoms ad order a new MRI, CT scan. Preferably one with contrast.   To be honest I want to have a myelogram done (I know that must sound strange) but they won't order it and I think it would be very valuable in showing the true issue.

Posted 10/20/2007 7:55 AM (GMT 0)

When was your most recent MRI?  Do you have a copy of the results?  You say they were normal, right?  But showed a disc herniation.  Disc herniations can cause a whole mess of problems, I can imagine especially in the neck.

Why don't you ask your doctor what would be the benefits of having a new MRI, CT done, etc.  It might just be that you don't really need one done.  It's not good for your body to get too many CTs because of the amount of radiation you are exposed to during the test, which could be one reason you're not getting one; as far as the MRI, they are extremely expensive and the benefit to you may be very slim, especially if you've had a recent one and no major trauma since the last test. 

I know how frustrating it is to not have an answer to what is causing your discomfort.  It's great to have faith in the medicine and diagnostics that are available to us, but when they don't help, the frustration festers.  Does your D.O. do any manual treatment at all?  A lot of D.O.s don't keep up on their manual medicine, which is why it's important to find one who does, if you're having musculoskeletal issues.

Posted 10/21/2007 2:29 AM (GMT 0)
Actually the my last MRI showed a C3-C4 central disc herniation that impinges on the posterior aspect of the cord.
I have never had a CT done on my neck. No one has refused to order another MRI but I haven't asked. It more than likely won't show anything anyways because it isn't showing the extent of the damage. I also have possible facet hypertrophy at C5-C6.

My last MRI was in February but my symptoms have become worse much WORSE !! The pain radiates from my C3-C6 dermatomes into my jaw, both my right and left Scapula, and Deltoid muscles My face is also going numb, including teeth which also throb, and my right arm. I have headaches which are also located at the C3-C6 areas. ALL WORSE WITH HEAD MOVEMENT. The pain is like someone took a knife and pushed it into my spine. There is also a stabbing shooting pain. All of these symptoms are new.

Despite what the doctors tell me my neck is the cause of all this. I can not and will not accept that it isn't without further testing. I would bet all my money and would even bet my life that my neck is the cause of this.

Post Edited (quahog) : 10/21/2007 8:08:08 PM (GMT-6)

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