How to know what is "real"
 

I try to get an appointment with a new neuro today (I haven't seen my prior neuro for >3 years and he is not taking new patients (which I would be because it has been so long))---and was told that I don't have a neurological problem and they won't even see me

I do have a strong history of depression and went to a major medical center where they said they thought part of my problems were due to conversion disorder (i.e. pysch), but that it was a diagnosis of exclusion. My psychaitrist, on the other hand disagrees.

While many of my symptoms are sensory, I do have several "hard" neurological signs (hyperreflexia bitlaterally and a positive Hoffman sign) and I've had numerous swallowing studies which show intermittant penetration, most likely organic (i.e. neurological, not psychological) and I do get pretty routine lung infections, which my pulmonologist says are do to microaspiration.

I'm on mesitnon b/c tit seems to help my swallowing.

I can't tolerate heat at all (>85 degrees I'm inside with AC)---I just get majorly fatigued.

I do have a history of a C5-7 fusion for cord compression, which I assume is stable.

I realize that stress my play a significant role; and maybe it is all "conversion" disorder (it is hard to get any info on what to do about that though), given the fact that I was told it was psych when it turned out to be cord compression, resulting in a fusion and drastic improvement of strength on the left, makes me recultant to believe (especially when not all the docs agree) without checking things out

I've had increasing sensory problems on the left and increasing mild urinary incontinence (just a little leakage and I pee every hour---this could be due to having 3 kids--stress incontinance)---God forbid if I cough or laugh

I've done fairly well ignoring things the last couple of years and things have been pretty stable (despite routine lung infections and problems swallowing liquids)

I am now very cynical of neurologists---I can't even get to see one b/c of my histroy of depression and possible conversion syndrome

at the very least I think they should evaluate my cervial fusion and the other sites where I had narrowing without frank compression

I guess once you cry wolf (intertional or not) they never want to see you again

PS-My primary care is ordering the MR (assuming they don't cancel b/c the neuro office said they will relay their "assessment" to my PCP.)

The Medical System SUCKS:mad:

I am so saddened by your post. This all sounds like abusing a patient to me.

I am so sorry you've been through all you have and this is the end result. Do you mean to say that you have never had an MRI? Is it of your brain? Your spine?

You can go to a urologist - without commenting at all on anything - and ask them about the incontinence. They might throw a drug at you though. If those muscles aren't strong, you will have problems. But there are other things that cause it.

I have a really hard time believing that you are aspirating because you have a conversion disorder. Give me a break. And C5-7 stenosis or compression isn't responsible for incontinence. And and and . . . .

Yeah, once they feel "threatened," not only will they not help you anymore but they'll make sure that no one does. How childish is that. AND harmful to you.

Do YOU honestly think that you have a conversion disorder? They are normally self-limiting and your symptoms have been going on for a LONG time.

I am beyond the ability to handle seeing what patients go through. And I know how much you've gone through. I'm stuck between angry and sad. I can't imagine how you feel.

What can we do to help?

Annie

uncertain
 

Thanks for your response---at this point I don't know what my problems are due to

I've been pretty stable, without neurology interference for ~2 years---it is just tha now I'm having increased problems and am concerned it might be due to my prio disc issues or one the the other herniations that were only mild-mod in 2003

I've has Brain MR's, which off course are indeterminate---several small bright lesion which are essentially unchaged since 1996, so I can see how MS could be out of the picture

When I finally got the cervical MR (to shut up my whining) they found a herniated disk compressing the cervical cord (more on the left) and I had urgent ACF---which did improve alot

Then I started having breathing issues and swallowing issues (modified barium swalows consistently show mild problems and intermittant penetration), modulating Abs are positive, binding negative 1 borderline and 2 negative SFEMGs, but mestinon helps my swallowing (so I continue it as I'm willing to accept a placebo effect---I don't enjoy drowning from a glass of water)---so MG is likely ruled out

I'm all for it being psych---as long as I can get rid of it---I've definitely had my share of depressive episodes---but I just don't know in this case---I can't convince my psychiatrist or PCP, by the expert at the large Univesity meets me 1-2 times and proclaims it conversion and now everyone else are bowing to his genious

I'm just annoyed and confused---I likel data and would like some hard data either way---right nowall I have is mush and an "expert's" gut feeling


Sorry to rant...I'm just ******---I didn't expect them to no even see me

Thanks

It isn't right eeyore
 

Just because you have an emotional disorder is no reason for a neruologist not to see you. You have just cause with a history of fusion in your spine. That is reason enough to be seen. There is also another woman on site who has swallowing issues as well. Have you had an endoscopy? I hope you get to see a new neruologist. Mental issues is not a reason to deny you care. sorry this happened to you. ginnie

How many times have you tested positive for AChR Modulating Antibodies? What's the number?

I am a modulating only MGer. There are, according to REAL experts, approx. 4% or more of us; though I'll bet it's far more than that. It's a different type of process of destruction in the neuromuscular junction than the binding antibodies. Both are destructive and cause MG.

Perhaps your doctors would like to call up Dr. Matthew N. Meriggioli (University of Illinois), Dr. James F. Howard, Jr. (University of North Carolina, Chapel Hill) and Dr. C Michel Harper (Mayo Clinic, Rochester) and tell them that they don't know squat about this topic or MG? If they do, they can refer to pages 91 - 92 and page 114 of their book "Neuromuscular Junction Disorders: Diagnosis and Treatment" when they tell them they are wrong and your doctors are "right." Maybe you could copy those pages and send it to your idiot neuros and the medical board of your state.

Or can't they "convert" knowledge into practice? :hissyfit: Now that's a conversion disorder.

How about a trip down to North Carolina to see Dr. Howard? It might take awhile to get in but I doubt he would pooh-pooh modulating antibodies. He is a very NICE neurologist. He would not treat a patient the way you have been treated. I've seen him twice, so this is not conjecture.

This is unreal. I can hardly deal with the way MGers are treated anymore.

You just regroup your records, your thoughts and then take some action.

It's your life. We patients have RIGHTS. And these doctors are denying you treatment. And it's malpractice.

Hang in there. You're not nuts. You're sick and need help.

:hug:
Annie

Only one of many sites out there.

http://www.aruplab.com/guides/ug/tests/0099521.jsp

Here's another explanation.

http://www.netwellness.org/question.cfm/36402.htm

Thanks for you support
 

Annie--I really appreciate you comments---I will definetly look in the NCU--I really appreciate a personal reference to a neuro b/c I've not been impressed with the neuro's I've seen.

I'll wait a bit to calm down so I'm not to cynical

To answer your ?--I've had blood sent once

Thanks again:)

A tourist walks in the zoo and reaches the cage of the giraffe.
He looks and looks, rubs his head and finally says-There is no animal like that.

It's hard enough to deal with this illness without having to deal with this *******. There are giraffes and there are (unfortunately) atypical forms of MG.

My personal opinion about "conversion"/hysteria etc. is very similar to that of the psychiatrist Eliot Slater-

-"In the main the diagnosis of ‘hysteria’ applies to a disorder of the doctor–patient relationship. It is evidence of non-communication, of a mutual misunderstanding ... We are, often, unwilling to tell the full truth or to admit to ignorance ... Evasions, even untruths, on the doctor’s side are among the most powerful and frequently used methods he has for bringing about an efflorescence of ‘hysteria’… Looking back over the long history of ‘hysteria’ we see that the null hypothesis has never been disproved. No evidence has yet been offered that the patients suffering from ‘hysteria’ are in medically significant terms anything more than a random selection. … The only thing that hysterical patients can be shown to have in common is that they are all patients... The diagnosis of ‘hysteria’ is all too often a way of avoiding a confrontation with our own ignorance. This is especially dangerous when there is an underlying organic pathology, not yet recognized. In this penumbra we find patients who know themselves to be ill but, coming up against the blank faces of doctors who refuse to believe in the reality of their illness, proceed by way of emotional lability, overstatement and demands for attention ... Here is an area where catastrophic errors can be made. In fact it is often possible to recognise the presence though not the nature of the unrecognisable, to know that a man must be ill or in pain when all the tests are negative. But it is only possible to those who come to their task in a spirit of humility."

Eliot Slater, ‘Diagnosis of “Hysteria”’, British Medical Journal, 29 May 1965, p. 1399.

..very poignant quote
 

Thanks for finding and pointing this out---I'm sure it has been buried in the medical literature.

I'm looking at it this way: If the neurologist doesn't want to see me, then he wouldn't be any help anyway

Than ks again:)

Exactly, so find one that does want to see you, and genuinely wants to help.


No, this was not buried in the medical literature. In fact it is a land-mark paper, that showed the grim consequences of this diagnosis. And since then many neurologists have been trying to prove that he was wrong, and also blame him for the neglect and lack of care for such patients and the way they are being ping-ponged from neurologists to psychiatrists.

I personally think that the distinction between neurology and psychiatry is completely arbitrary, as both deal with diseases of the brain, and both know very little about it.

I think that as many neurological and psychiatric disorders currently have limited effective treatments, there is much place (in both) for finding the optimal combination of pharmacological management combined with physical and emotional supportive care as required.

You need to find those physicians that understand that those are hard diseases to treat and not hard patients to treat, and unfortunately not all are capable of mentally making this important distinction.

If you think you are too cynical then look at this patient:

http://www.youtube.com/watch?v=3RwToJB2bAE&feature=related

http://www.youtube.com/watch?v=_XA0nZ2A_q8&feature=related

http://www.youtube.com/watch?v=AVtm0hGYaFM&feature=channel