Finally.... A diagnosis

Hi all,

Bear with me as I tell this the long way. As many of you know, I am in Atlanta having tests and seeing a neurologist and GI guy. Yesterday, I had a modified barium swallow and all was fine (except for the fact that it hurt like hell to swallow!). This morning we went to the neurologist. He looked at my records, did a very thorough exam and then proceeded to tell me that I have Conversion Disorder. Basically, what this means is that he believes that because I have PTSD (was abused multiple times by different people), and despite the fact that there is 18 years since the last incident and that I have been in therapy and dealt with all this, all my symptoms (pain, numbness, dizziness, fatigue and difficulty swallowing) are caused by some part of my subconscious that’s still holding on to some of the feelings surrounding the abuse and that I need to go back to therapy and deal with those issues head on even though it might be painful.when I said I had dealt with all that, he said that I obviously had some issues surrounding the abuse that were unresolved. So, basically, the symptoms are very real and treatable but the cause is all in my head. I asked him at what point did I say, this is the conversion disorder or this is a “real” problem and he reiterated that any new symptoms should be checked out and treated.

Well, we left there and I told my husband I wanted to go home and forget about the endoscopy I had later today and the gastric emptying test scheduled for tomorrow. I was convinced that I would be put to sleep and spend a bunch of money and wake up and the doc would tell me nothing was wrong with me. When I was getting prepped for the endoscopy, I told the GI doc what the neurologist had said and asked him if this Conversion Disorder could be causing the swallowing difficulties. He said no- it was a whole different thing. He also said that he would recommend that I have the gastric emptying test tomorrow also. I just thought to myself that he just wanted the money (even though I had a good impression of this guy from the get go). So, I had the endoscopy and yes, I am starving cuz I didn’t eat for almost 24 hours, and I was ready to go. The doc finally came in and sai that I have a tumor in my esophagus. He did a bunch of biopsies and I have an appt. for a chest CT and then an appointment with a thoracic surgeon tomorrow. He said that the tumor could definitely be causing the numbness, dizziness and fatigue and of, course, the pain and difficulty swallowing.

I don’t think it has all sunk in yet but part of me is relieved that I have some validation that I am not absolutely going insane. LMFAO. Because that is the way I have felt may times lately. The other part of me is scared sh**less but I know that God will get me through this. Just cut that damn thing out of me and let me go on my merry way!

The moral of this story is to be pain in the ass and push for answers when something doesn’t feel right or when the docs try to explain every thing you have on fibro. If it wasn’t for a stranger in an elevator taking the time to care about another human being, no telling how much sicker I would have gotten. Nurse Brandy (as my husband calls her) has already gotten flowers from us, along with a phone call today and I will forever be grateful to her and thank God for her.

And thank you all for your prayers and good wishes. I have not posted a lot in the last couple of days but I have kept up with all y’all’s. BTW, finally got some peanut butter chocolate ice cream is afternoon. Whoopee!!

Hugs, MB

You know, MBP, when you said the neurologist's dx, I wasn't buying it. I know that PTSD can do a LOT to us but your pain was much too real to be based upon past abuse, to my mind. Not that I'm a doctor. Just my humble opinion.

I'm SO GLAD you went thru with the endoscopy! They are worth every penny. And you see, you DO have something wrong. And it ISN'T the fibro (for once.) Your husband was blessed to run into that nurse. And thank heavens that FINALLY you have the answer to all of that crazy pain. Now you can get that sucker out and concentrate on getting well. Yay! I'm so happy for you!

MB…first off if you have a Safeway nearby go and get some of their Safeway selects peanutbutter cup icecream. It comes in the small tub like Ben and jerrys only oblong. It is some to die for ice cream!. It’s pb ice cream with peanut butter swirl and peanut butter cup pieces big ones!

Second off I am so sorry, I too also have had similar incidents as yours. People ask me how I’ve dealt with my abuse and the only thing I can tell them is for some reason I always knew that it wasn’t my fault. There was nothing I could do about it and there we nothing I did to cause it. The only thing that ever bothered me was when I was in my high teens somewhere between 16-18 I told my mother and she told me that I was lying. That it never happened and I was just a list. I told her and that’s all I needed. I’m sorry this doctor didn’t give you anything worth what he charged you. I know this is probably your 50th 2nd opinion but I’d toss his opinion to the wind and keep it up. He was a qwack.

On the tumor side. I am not much of a prayer but I am praying for you honey. You are in my thoughts and wishes that everything comes back okay. That they can just remove it and you will be fine.

Hugz and Luvz
Danielle…aka…Punkin.

Hey MB,

Just goes to show you that you're only the good kind of crazy! Gotta listen to your body, you could have just talked your self hoarse trying to work through past traumas and this tumor would still have been there.

They will take good care of you, and we will be here waiting to hear from you when it is all over with. Wishing good outcomes on the rest.

Love and hugs,

SK

Thanks Petunia. I so appreciate all your support, and everyone else’s too. It’s amazing how these docs can make us question ourselves and make us feel like we’re losing it! And really, PTSD causing all those symptoms? WTF? But that neurologist actually had me thinking he might be right. Have a great day. Hugs, MB

Thanks Jillian

Thanks Danielle for the thoughts and prayers. But, as far as ice cream goes, only Haagen Daas will do! LOL

Thanks SK. Maybe if I went to therapy and talked and talked and talked, I would have worn that tumor away. Just a thought. LOL

Thanks for all your support. It’s much appreciated.

Awww sweetie!! I'm so sorry for you.

Thank God for you elevator Angel then! What a stress for you. I can't find the right words (blaming the fibro fog lol).

You WILL get through this MB. All our thoughts and prayers go out for you that you will be totally recovered very soon. I'm so glad you got this looked into now and ignored the tw*t with the stupid conversion diagnosis. He needs a bullet in the a** lol.

Sooooo glad you got your icecream hit after all this. I think you should just clean out the shops now and fill up with loads of yummies. You totally deserve it.

Keep us updated please sweetie. We will try to be your rock now you need it.

Love and hugs

Jo xoxox

Gut instinct isn't it? And the fact he sounded like he was talking shizz too. What a poopy head!! Get well soon MB!!

Sounds to me like the neurologist was treating PTSD like the same dumping ground that many treat fibro as. And if you've got PTSD, you pretty well know what your issues are. You don't suddenly end up not being able to swallow without hideous pain. (You might have a flashaback that might impact your swallowing for awhile, but that's another story.)

I'm just grateful that you found someone who believed you, ran tests, and found the exact physical cause. And if I were you, I'd be sorely tempted to write to the neurologist and tell him the REAL causitive agent of your pain. Cause I'm that much of a beyatch!

Ditto to all of this, and my admiration to Punkin for never stopping believing in herself, even after all of her abuse and her mom's disbelief. People need to be more like you, Punkin, sure of themselves and what they've seen. MUCH healthier that way.

OMG, SK, isn't that the scary truth of it? If MBP hasn't perservered, she might have screwed herself out of a healthy future. How frightening! It gives me the chills thinking about it and thinking that THIS is what a highly trained doctor told her to do. Chills.

yes, MBP, want to add that my thoughts and prayers are definitely with you on this. Hope you nail this sucker to the wall, get it pulled out and tossed away, and you recover beautifully. We will accept nothing less than this, tumor!

GO, MBP!

yes, MBP, want to add that my thoughts and prayers are definitely with you on this. Hope you nail this sucker to the wall, get it pulled out and tossed away, and you recover beautifully. We will accept nothing less than this, tumor!

GO, MBP!

PS: Wanted to add: 2 other fibro people have had "depression" or "mental health issues" added to their charts despite NO sign of such a thing. And now you're being told it's "in your head." Years ago, women were told by their doctors that almost anything they suffered from was due to hysteria or PMS. Or both. Think about it for a minute. Fibro is a female illness, usually. Most doctors are male. Are these doctors STILL assuming it's all in our head, more or less??? Makes you REALLY wonder...

Jo and petunia, thanks for the thoughts and prayers. I saw the tumor today. It is the size of a lemon! No wonder I was having trouble swallowing. The surgeon said that it is most likely benign but will wait to get the biopsy results Friday. He ordered some additional tests that I will have at home (going home in the morning) and then it will be back to Atlanta for the surgery. He doesn’t know what causes the tumor and said it just happens sometimes. He did say that people that drink a lot and eat a lot of fish are more prone to them but neither fits me.

As is usual for me, I had to do things the hard way. LOL. The tumor is in a very difficult place and I will be in the hospital 5-7 days. The surgeon said that I would not be down and out for long but even 5 days in the hospital is a long time to me. But, the silver linings that maybe I will finally lose some weight. Nighty night- don’t let the bed bugs bite.

I was really tempted to go to his office today on the way to the surgeon and give him an earful. He would have thought his office had been invaded by fish wives with all the screaming and cussing I would have been doing. Conversion Disorder my a**

Oh, he deserved it! He richly did. More fun to write a civil letter tho, so he can't blow you off as easily. Let him know very politely how full of shizz he is!

At the very least you would have worn away all of those nice, green rectangular pieces of paper in your wallet.

But it is much more fun to fantasiz about giving him a good cussing out!