Ho many dx'd with stress or psych problems first?

Hi, I am not new to MS and I still do not have a firm dx after over 20 years of seeing MS specialists.  I have been told that I was just stressed and then there was an inference of psych problems ranging from depression to personality problems to somatoform disorder to conversion disorder.  I was on Copaxone, (which worked!) and then taken off, (had an increase in attacks), and told by a new MS specialist that I all of a sudden, (after being followed for nearly 20 years in an MS clinic), that I did not in fact have MS, even though I had signs, positive MRI and evoked potentials.  This was a reputable world class clinic and I am really puzzled.  On the other hand I am a bit sucker punch to think I was seen by a very reputable MS specialist for nearly 20 years and told that I should always been seen at an MS clinic for no reason at all.  

I welcome you sharing your story.  I think we can all help each other more than some doctors.  There are some doctors that are excellent I am sure.  I wish I could find one.  At this time I feel like I have been abandoned.

[Eyesnlegs]

Hi and welcome, I can relate to this, first dx with stress 19 years ago and spent 2 years in psychotherapy, I even convinced myself. This after being blind in one eye for 6 weeks!!

I've had stress, diet, pre-menopause, menopause, overweight, not enough exercise, not enough sunlight, you name it - I've been there and to just as many consultants with various parts of my anatomy.

Finally had a sort of dx 'mild MS' last year after 19 years since my first incident.

This would be a good poll too.

Welcome again.

Pat

[JJFL]

Hi Irene5353,

Man that *****.....I know what you mean about the Docs using the crutch of psych problems to say that is all that is wrong with a patient they can't make fit into there narrow minded world.

I saw where you said your previous Neuro retired.  Can you ask someone at the MS clinic to get a message to him and see if he can do anything.

You also could ask to see another Doc in that same Clinic, if there is one.  They might help you when this new Doc won't.

Peace....

JJFL.

[Ufrustrated2]

Hi Irene5353,

Yep, been there and never ever want to go back, I mean freakin never!   And exactly what "jjfl" said,  "know what you mean about the Docs using the crutch of psych problems to say that is all that is wrong with a patient".

It affected my relationship with myself and others when I began to believe I actually had those psych problems. Some depression comes secondary to the chronic pain, never knowing how you will feel, etc., so sure I’ve had those associated blues. But that has never been the main root issue. And certainly my body has been telling me that too.

Now currently with a statement of "unspecified demyelinating disease" I have some mental confidence coming back. Now knowing for sure that all this time there was more to the root cause than those pigeon holes the VA kept tossing me into. I conjecture it is cheaper and less work for them not to follow through on the Navy findings and doge around it.

You’d be surprised, or maybe not since you are on this forum, how people treat you different when they see those odd labels doctors put on you in the records. Even the vet organizations that are there to help would see those labels, and well, it is like, "nothing wrong with you vet, it is all in your head, that is what the doctor says".  Have any idea what that does to your identity?

The Navy explicitly told me that the VA would follow up on the spinal fluid issue and infection(although the white cell count had gone down prior to discharge). They never fully did, and then you get farmed out to shrinks.

Of course I do not want a disease but it is bittersweet to get closer to a root cause and hopefully some treatment options than sending me to a shrink’s black hole.

If it is a slight indication of what to expect of national health care and budgets, think about that...good luck!

This is my version of course, and the VA loves the word, "subjective" so take from it what you will. But there is a paper trail of this, entire so how "subjective" is that?

I will add, that I have met some wonderful hardworking and very bright folks at VAs. And they truly do help the vet, no question about it. They are overworked and probably underpaid.  I’m one of those that maybe slipped through the cracks on this CSF issue. But it would seem a lot of people with this type of illness whether dealing with civilian doctors or VA doctors have been and are going down the same road having bizarre conclusions made by doctors towards their patients.

[Irene5353]

Thanks for commenting.  I guess part of the diagnostic process is torture to test our resolve in getting any concrete dx.  I also did the psychotherapy bit but it alway ended up with my counseling the counselor.  Some of them are so darn needy.  I can appreciate lost tests - that is what is happening now.  It seems with this electronic medical records they only scan in a few years at a time so your whole history may not be evaluated.  I have not had evoked potential tests in over 20 years and I find that negligent.  I think many neurologists are guided by a fear of malpractice so that they dare not make a definitive dx when they are unsure to any degree.  Tis a reality that creates a certain hell for patients.  Thanks again!

[jed9999]

I was 'fortunate" enough to get a rather quick probable diagnosis back in 1973 and to not have some of these trials, but the backward glances, and general skeptisism I suffered through the years aligns me with each of you who has had such a hard time with the medical community and getting a MS diagnosis! Sure, MS is difficult, and has a zillion symptoms and presentations, but it surely doesn't have to be THIS hard! I have concluded it's a psychological playland of sorts where there's one upmanship galore, sometimes even bullying, confusion built upon sometimes sexism, and maybe even it's on a dumping ground of frustration by the doctors. (my opinion.) When I'm being extra nice I say problems in dealing with MS are because it's such a hard specialty: the neuros can't do a lot for MS and are frustrated, and it'spotentially such a difficult disease. Hang in there, fellow MS friends--there ARE good MS neuros out there---persevere and try to find peace. Jane

[Irene5353]

I agree with you completely.  I know there is a very high suicide rate among doctors and I believe that caring for patients with such a frustrating disease may contribute to that.  The bullying and sexism which you note are, I believe a contributor to bad health in patients.   At this point I am just sickened by the neurologists that I am avoiding them altogether.  One thing about MS - a doctor cannot do very much over time.  The only reason I need them is for a prescription for Copaxone.  Otherwise I do not believe they can help me anymore.  In fact I think they have been neglectful.  One day there will be better ways to make physicians accountable to patients.   Thanks for your comment - I wish you well!