Ok I got the report Dr.D wrote up about my visit and once again he said he doubted that any of my problems were neurological basically, not MS, my mri was probly migraine lesions, I am very concerned about my sx, and anxious, does not see the need to pursue possible MS testing (MAY be right there) did say i showed some loss of temperature sensation and woud do the skin biopsy though he is doubtful about those problems...and sums it up as the bulk of my problems being "pyschiatric"!!!!! I am already on so much anitianxiety meds anymore I would be in a coma. I am shaking mad, specially cause of the cortisone and daughter just called freaking out again. I told her I would not listen to her ranting anymore and hung up. I called Jh and left a message for the Clinic Manager. He is also doing a tilt table and probly will say I don't have pots either. Maybe I don't have a neuro problem but I have some kind of problem that is not pyschiatric!!! MY legs can barely walk. I have fibro. He ignores all that. I am requesting another doc. I was sent there by my doctors, not sent myself. I swear there is a dark cloud over me . My endo is running some more tests on me at least mri of adrenals and some bloodwork on pituitary due to lack of adrenal function. I just can't believe this. I got a letter asking to rate this doctor, there is were I got the number to call re: my 1st visit in April. Even my husband is mad. Should I go thru with the scheduled tests and then see what happens and request a new doc then? And say what to the person who calls....????? THat I am offended? But would still like the tests and then want 2nd opionion. I cant beleive I get to a great hosptal and this happens. My arms are so fatigued I can not hold them up for more than a minute. Maybe my fibro got worse, but he doesn't say that!

OMG...I would be so upset too! It is bad enough when you have family/friends/laypeople think it is all "in your head" simply because they haven't the knowledge or expertise to know otherwise.......but to have Doctors tell you that!

Ack! So sorry to hear about that. Three times now in three different years I've been sent to shrinks by neurologists who couldn't quite pinpoint the source of my symptoms, and instead of seeking a second neuro opinion, decided I must have psychological problems (the last time despite an EMG showing neuropathy, grumble).

Do you suppose you are being doubted because of your fibromyalgia diagnosis? I can't tell you how many doctors have seen my fibromyalgia diagnosis and have blamed ALL my medical problems on it. While it is true that fibro does cause a wide variety of symptoms, it doesn't mean you can't have that AND something else.

Unfortunately, I can't recommend any docs to you because I can't find one myself. I had excellent rheumatologists in Denver, but I recently moved to Sioux Falls and so far have found nothing but quacks here. I've got the names of some docs at the Mayo Clinic who are supposed to be excellent, but I'm scared to death to make an appointment because of my horrible experiences with previous docs.

Maybe you can wait to get another doc until you find out the results of the endo tests? If they show problems besides fibromyalgia, perhaps the next doc will take you seriously then? Don't know, just trying to throw ideas out there.

In the meantime, breathe. You will get through this, upsetting though it is.

I wish every doc who dismissed a patient with the "all in your head" speech would be forced to undergo psychiatric testing to prove that THEY are not crazy.

fanfaire

I have calmed down a bit. The whole thing just sounds so so so so against me , and the pyschiatric thingy put me over the edge. I do have another problem I was sent to him for in April, I wake up every morning shaking and trembling, sob, coughing, this is even after beta blockers and meds..I am going to my copd doc next week, maybe he will have a suggestion.....I should know better by now to expect any miracles...but you hit the nail on the head....you wonder if you should even bother going !!!!! I think after this round unless something is found I will just wait till something worse happens I am just wasting too much money. by the way no one can figure out the morning thing.....and that is not why I was even sent the second time!!!! NOt even a sleep study is warrented here for me. Too much testing . Whats the point. Those were his words! Betch it was him he'd have 100 tests by now. Plus I am in an SSDI case so thats gonna look real good some neuro from JH doubting every freakin thing I say. It just makes me so sad. Maybe it is another type of disease, where do they get this pyschiatric stuff!!!! MY pyschiatrist doesn't even know what to do!!! I have been tested to death, maybe the endo doc will show up with something or the small nerve biopsy will...I just am runnning out of steam here. Too bad if I do have MS and it couldve been halted a little but neither neuro thinks that is it , though I do have a lot of sx....I guess only time will tell.....thanks for caring. IT means a lot in this mixed up world. Does your fibro get worse? My sx took a nose dive last fall esp. the arm fatigue that is why the concern of my local neuro....well I will let you know what happens....I do have a good rheumy and psch doc who help as much as they can, and the neuro is hard to talk to the local one but he did alot of tests....he sent me there!!!!!

Sweet Dreams...

THINK and hard...IF it were totally in your head, why are they suggesting other testing? There must be more than one 'off-aspect' in your prior tests that is prompting them to do the extra tests...THE DOCS HAVE TO JUSTIFY these needs for extra tests and it's gotta be on facts. These places do not just 'do' them for 'practice'! Got that? They are testing more, so that's a good thing. Tests don't lie, interpretations of tests can.
Now, put your panic aside, and yes, you are emotionally agitated, as anyone who has pain to this degree would be. Think about it! You keep rolling over in your mind WHAT IS HAPPENING to ME? and as much as you try, it just keeps getting worse. You do have to find ways to turn off that 'panic button' in your mind to be able to get to the sources of your pain and learn to use it to get treated.
At times that 'emotional' component is brought up to me by various docs and I always calmly reply: Humm, emotional? Well, who in their right mind wouldn't be a little bit, if they constantly felt as if they'd been dipped in french-fry oil? Especially after X months or years...It is stressful, wouldn't YOU think? Next Question? It is always good to remind some docs, who see dozens of 'us' a week that WE are the ones attached to THIS problem. They can go home...
Keep some faith, and hope, this is what YOU have to do. Maybe think of yourself as a 'used car salesman'? You have to sell them of your pain and your faith in THEM to help you...well, you get the gist. - j

It's so sad, but when doctors can't figure out what is wrong, their egos can't take it and they blame it on an emotional problem of the patient. It's more of an emotional problem of the doctors! Hang in there.

some good advice here and if and i hope not,like me i must reread
everything when i calm down. Well you told you daughter to hush
will she,i hope,because this is not the time to put up with her stuff.
He is doing tests,j is right if all in head why would the nutball do more
tests..There's something ,but Drs. forget it's there job to cure,not
drive insane...I have seen my daughter-in-law,tough little thing,cry
because she said she did not plan on getting rich on people who are
psysically ill not mentally. She just went into research,honest she had
to take a break...We are bounced around so much,i have one of the
best Drs. i've ever had from John Hopkins,but he came here from Mayo
and i'm such a fan of there's...Think it through and honest you sound
so much like what we are going through as well,not fair,i hate this for
you. Drs. make my tummy hurt,why do i date one he's cute,very
cute..Oh forgot to say my Daughter-in-law is a Psychitatrist. Sue

I used to have a high regard for doctors but since getting PN my view is not the same anymore, " some loss of temperature sensation ", that itself i showing small nerve involvement, why on earth would this neuro want to do a skin biopsy is beyond me, don't worry about that neuro, finding a good PN expert is they way i would go.

I'm sorry and can relate. I hope you don't give up and try to find another doc. I know how hard it can be to get someone to listen and push outside the box and especially through the pain but you never know the next doc could be your answer. Can I ask what this doc wanted you to do now? I know for me one of the pain docs at the university wants me to see a psych first. I have seen many in my past and even when I was in ohio pain clinic they focused so much on the mental. It aggrevated me but I try and this is very hard say to myself the pain is real from something but how I cope mentally with what I call the pain and nicken poop docs I have to work on. Hang in there and I wonder if you call the doc and tell him how you feel about your treatment. Sometimes it doesn't help but I have learned to try and I'm still in the trying to use my voice so that it doesn't eat at me. Hugs!

I decided to go thru with the two tests he ordered since it is all set up. Then go from there. Brian, isn't getting the skin biopsy a good thing? I think it is a punch biopsy and he said that would be the best place to get it they will be able to "decipher it well there" . I thought that was for Peripheral neuropathy??? The funny thing is they had origianlly put me with a PN specialist then called and said go back to him!!! YAk! I am still waiting to hear back from the place about the call I put in.....re: my first appt with him....and I do see a pyschiatrist for crying out loud she can't even figure out what to do with me!!!! I feel like a medical freak. She does not think it is pyschiatric. How absurd. And I was not appearing anxious....I deliberately remained calm and upbeat,,,,even though I felt my heart sinking again....oh well, lets see what happens I have the tilt table and maybe they can figure out more than him! I hope the biopsy shows something and also things need to be corrected that he wrote in my report.....he said I was on a tapering dose of cortisone....I am on maintenance dose with no end in sight!!!! Get it right doc!!!