Could it be something else?

Has anyone diagnosed or wondering if having DID or DDNOS ever thought it could be something else like a medical problem contributing to your change in conciousness? I often wonder this and have been obsessed with the thougt something medical is going on making me forget my childhood etc. and having these so uncomfortable dissociative symptoms but doctors can find nothing. Has anyone else ever wondered if something else is wrong with you and you're still on the wrong path to treatment? I want to accept my Dx but there's this part that constantly eats at me telling me I'm wrong and that I have something medically wrong.

Ashley

Well, I read that DID can cause changes in the brain, like little adjustments in its shape, since memories aren't traveling along one path, but many. But I don't think that dissociation can be caused by anything medically wrong. I really think it's just a mental thing, something to do with chemicals or whatever. Not fatal.

Denial often crept in, in the form of thinking maybe it was medical instead of DID. It didn't help that my mother was often suggesting that it was something medical instead of psychological (she did that out of her own interests though I think, to cover up me discovering some of the abuse from her). I think that denial is there to protect you from accepting the hard realities. To a point, that denial is helpful but eventually it is a hinderance because it will hold you back from getting the treatment you need to help you stabilize your life. To get over the denial initially, I decided I would just "pretend" the DID was real and get the help to fix it. Once this approach of treating the DID as if it was real started helping me, I could eventually accept that it was real. Perhaps that is an approach you could try in order to help yourself?

I went through 3 years of MRIs, blood tests, being bounced around from doctor to specialist, to clinics.

In the end I was diagnosed with idiopathic secondary progressive multiple sclerosis. None of the treatments, pills, non of it helped me. I was still having seizure, black outs, twitches in my body. Nothing helped.

My neuroligist repeated asked me if I was abused. I always said no and was telling the truth. I didn't know about my childhood. The gaps in my memory hid all of that away from me. I had all the symptoms of multiple sclerosis yet my spinal taps (I had a few and they hurt) were clean and my 20 or more MRIs over the years were always normal. Even my seizures were never found in any tests.

So right now you have a diagnosis you don't believe. It's not really going to hurt to give your T a chance, right? I imagine that copays on therapy are a lot cheaper than copays on MRIs and sleep studies. Easier than having blood drawn every two weeks by various specialists.

I don't have MS. I don't have epilepsy. I'm dissociative with a bad, bad case of conversion disorder. I stumped every doctor from neurologists to stomach doctors to rare disease specialist in my 50 mile radius.

For you it could be medical, who knows. You certainly have the right to a second opinion. At the same time, give your T a chance.

@ ashesoflife....I too have had numerous tests done. I've had an MRI, CT scan, Spect scan of my brain. I've been tested for almost every disease under the sun and have spent several hours to days out of my life trying to figure out what is wrong with me. I keep thinking something is making me feel the way I do, something MUST be physically wrong. Every time I go to a doctor they look at my sympathetically and only give me tests to appease me but all the while they don't think I'm sick. I'm prayed to be sick just so I can fix this and make the pain go away. I've analyzed my own blood work results to "figure it out" claiming the doctors are complacent and idiotic because they don't take my symptoms seriously enough. I can't do it anymore. My therapist says I'm DDNOS and I want to trust that but, what made me like this? what happened to me? I feel like I don't know where I am like I woke up and I was all of a sudden gone. There's nothing. I can very much relate to how you feel/felt, thanks everyone for responding.

Ashley

First off, I don't have DID, but I just thought I would chime in here.

It could definitely be something else. The problem is there are so many medical problems that there is just not enough research into. The brain especially is very poorly understood. Autism, PANDAS, Schizophrenia, all have possible disease/infectious or autoimmune causes.

I have stomach paralysis that just developed one day out of the blue. Fine one day, super sick the next. The doctors have NO CLUE what, why, or how I got this and I've been to see some of the best doctors in the field. Yet there is a doctor on the fringe of science studying how viruses can cause various symptoms for years after the initial infection. His theory is that I have an active Enterovirus infection, the virus has incorporated itself into my stomach, and from there spreads throughout the body, up the vagus nerve into the brain causing all my symptoms even 3 years later. This is significant since enteroviruses (ever get food poisoning?) are extremely common, which means a large portion of the population has or could be infected, and not realize it.

I have partial paralysis of the stomach, dysmotility of the intestines, orthostatic hypotension, blackouts, and tremors and chronic fatigue. The problem is there aren't blood tests for this, as the infection isn't in the blood, it is in the tissues, so the only diagnosis is through endoscopy and biopsy. Plus the only treatment is with anti virals which may or may not work.... Everything is experimental.

My point here, is if you think there is a medical cause, keep researching. Mitochondrial disorders for example can present as psychiatric problems.

With all due respect, that sounds realllly far fetched. I think I'd rather die than spend the rest of my life playing doctor to myself.

brandonsmom777 wrote:I think I'd rather die than spend the rest of my life playing doctor to myself.

I might be off base here, and please correct me if I am, but this seems pretty telling, no? Maybe you are tired of chasing vague medical ambiguities and ready to accept it might be more psychological than biological? Just a guess from the above statement.

And of course, we can't separate out psychological from biological. They each affect one another. There have been studies which show that fibromyalgia is highest amongst people with serious psychiatric diagnoses (just as an example). It's possible that all your symptoms are a result of the dissociation. From the sounds of it, no other explanation seems to make sense, does it?

Maybe you are entering a new chapter of your life where you are ready to start looking at things you weren't ready to before...? Again, not assuming anything, just putting the questions out there.

I think you're definitely in the right place. I hope you start finding the answers to some of your questions.

Brandic

brandonsmom777 wrote:I've been tested for almost every disease under the sun and have spent several hours to days out of my life trying to figure out what is wrong with me. I keep thinking something is making me feel the way I do, something MUST be physically wrong.

Look up something called conversion disorder. I dismissed it at first because when first read about it (after my neurologists nurse said "conversion disorder would explain all of your symptoms) I thought it meant that you were pretending to be sick.

It isn't pretending to be sick. You really are sick. There were days I really couldn't walk. Numbness all over my body was real. I was peeing blood yet the urolgist had no explaination for it. Your symptoms are all very real (assuming it is DDNOS with conversion). You aren't making it up. It is just that the cause isn't something in your brain matter or blood work. The cause is very surpressed emotions.

I still get days where my legs are in so much pain and I can barely walk. Now instead of popping a steroid pill and calling my MS doc, I sit down in a quiet room and figure out what's bothering me and deal with the emotions. Once I admit "I'm really stressed out today because ___ happened. I'm going to call him and tell him how I feel" the pain in my legs gradually over a few hours vanish.

My therapist says I'm DDNOS and I want to trust that but, what made me like this? what happened to me?

Think of it this way- your mind created a huge labrinth full of hidden traps and puzzles to solve. There are no maps. Only a maze. The maze was created to keep you on the outside. You have to fight your way through the labrinth to get to the other side.

All of this was done to protect yourself from your memories. At the other end of the maze, you get a great prize. You get to know who you really are.

I feel like I don't know where I am like I woke up and I was all of a sudden gone. There's nothing.

I know the feeling so well.

If you haven't seen it yet, watch a movie. Tim Burton's 9. It came out a few years ago. I've seen a few movies about DID but never related to any of them. Burton's 9, now that I understand! For me, that is what DID is like. I'm 9. Jill is 5. Jackie is certainly 3. Anyways, I have all the dolls from the movie paired up with my others.

It sucks having DID. Really it does. At the same time, it could be worse. And bad things may have happened to you as a kid but hey, you already lived through the worst of it and survived it. Now you just have to survive remembering. It isn't easy but they are just memories now. You can hit pause on them if it gets too rough. You can call your T if you are having a bad day. You can take the time to cry and grieve. You can remember who you really were.