Saw Drs Today

[Becca_7706]

Today after a chat with someone who works in dysautonomia research about the comments on my file I went to see drs regarding Somatoform. It took a lot for me to do it, screwing up my courage to ask for help and to begin treatment. Knowing I have had symptoms for such a long time I knew it would be tough.

Went to see GP she read through letter from Prof Mathias and no mention of Somatoform. No mention of psychogenic symptoms. No mention of lying either. Not that I think he or any member of his team reads forums on line but if so then I owe him a huge apology for what I wrote before and I did him a great diservice in believing those other people over him.

There was mention of EDS, RSD, and complex syncope (combination of vasodepressor and vasovagal and possibly anoxic syncope) and the differential diagnosis was PoTS and autonomic failure which seemed a sensible conclusion but that wasn't conclusive enough so they want me to go back again for more guinea pig trials next year. I definitely have autonomic problems of that there is no question.

So I went to see the psychaitrist, who has spent 9 months lying, not only to me but to my GP, orthopaedic surgeon and work byt telling them there is nothing physical wrong with my body. His diagnosis has always been somatoform. Even though I disucssed it with him and he said it wasn't that. Today he told me that somatoform is the obvious conclusion for people like me. He told me that he wasn't suprised I couldn't cope (apparently he would be worse but hey that's life) and they could do nothing for me. He gave me a prescription for pills he gave me before which made me worse (but my tachycardia is getting worse so I need something to slow it down and this was recommended if it doesn't work they might try something else).

I know this probably sounds silly but now I'm scared really I should be I mean I've been proven right but now I'm just scared. I'm losing my job and my future terrifies me. I'm not coping and just wanted some support really.

x-posted to NDRF

[pat57]

do something you enjoy, as often as you can, and take things one day at a time.

Good luck.

http://positivepause.com/index.html

[Mrs. Burschman]

Becca,

I can understand your feelings. I get really scared too.

I'm glad you're getting everything sorted out, though! It's nice to find out that something's not all in your head (which is what I thought for years.) But the problem is, if it's not in your head, it still IS in your body, and no one likes to have a chronic illness.

Sending a hug your way!

[pastordari]

Becca,

I can SO relate to everything you said in your post.

I saw a psychiatrist a year or so ago who outright told me I was a hypochondriac.

My pcp "fired me" as a patient following my seeing an autonomic doctor. She said I was doctor hopping and self-medicating non-existing illnesses. I always go with what the docs say regarding meds because I am on way too many to take things into my own hands! The doc knew me better than this, but she couldn't handle, IMO, having an assertive patient who knows how to get the care I need. Not to mention the doc had told me herself that she did not know what more to do for me. Thus, I sought out someone who would.

My new pcp whom I interviewed about the pots, NCS and dysautonomia prior to begining a doc/patient relationship now says "there is nothing physically wrong" . .. what a change in only a few weeks.

Several folks at my work question my diagnosis. One has said to me it is "pure unadulterated bull %$*@". Others have been less obvious, but clearly doubting the things I report to them about my diagnosis and symptoms.

My therapist told me just he other day that if I should turn out to have issues with hypochondria we'll deal wtih that. Not the answer I was expecting! Prior to this week, she has fully supported me and this darn illness but it seems she is not so much supportive now . . . I need to clarify this with her on next visit.

Even my mother has said, well you have been sick alot I can understand work questioninig you. My mother! She more than anyone knows my struggles. It is tough.

Becca, hang in there and know that the things you are experiencing are real and true. You will overcome the current struggle.

It is so hard when people are not listening and paying attention. It is practically mind-boggling to me when the lies start. How can you really combat them? I get quite frustrated, but some days are better than others. I try to hang on to the good days. But please hear me ssay, I know where you are in this web of invisible illness.

Dari