Please Please help I'm desperate

[sleepwanted]

Hi, I just found this site yesterday and it made me feel ten pounds lighter. My doctors are also telling me I'm obsessed with my health and are refusing to do anything but give pills. I need some advice from you guys if you have a moment. I have alot of things medically going wrong right now I'll try to keep it short and I'm curious what you guys would think?

Since I was very young and to this day I am very clumsy I bump into walls etc a million times a day, burn myself, trip, lose my balance and have near fainting spells and about 10 or 15 successful ones (my elementry school report cards even say "she often bumps into walls", it must have been really noticeable)

I catch everything that everyone has, my immune system isn't good

I have had sleeping problems as far back as I can remember and have been looking for a fix since I was 19 years old, I am now 29. Sometimes I get 20 mins a night, no sleep or a few hours.

My memory is poor, my reflexes slow, I shake, I'll be holding a glass of water and it falls to the floor for no reason, it takes forever to learn things and I have trouble finding my words.

I am getting depressed because of this and my behaviour has changed

My back, neck hurt all the time

I have never ending headaches that usually sit about a 8 on 10 on a pain scale with the odd migraine and barely a moment with relief

My vision is getting worse when watching tv the words on the tv look double etc etc etc

I could keep going here, so you guessed it my doctor put me on so many antidepressants and other pills I was taking 17 pills a day, this is before and test were conducted and then asked me to admit myself to the psychiatric hospital and I did, so desperate for help (at this point I went a week with two hours of sleep and a massive headache) they had me so drugged up I couldnt walk or function it was sad really. So I asked to be discharged five days later.

I spend two months like a zombie wasting away in bed and went from 143 pounds to 125 pounds. Then I just got sick of being sick I started to do some research and I brought this to teh attention of my dr. I asked for an MRI as I have two close family members with MS and 2 with begnine brain tumors, he said NO. He also sent me to a counsellor at this time who told me I was obssessive compulsive, maybe I had ADD (put me on meds for this) etc etc. I was on so many meds I had to keep track of appointments and symptoms in a binder which I carried as the coctail of these pills: (I have to let you see what they had me on over the past 5 months its scary):

Mirtazapine, temazepam, sertraline, seroquel, mertazapine, fluoxetine, imovane, methoprazine, diazepan, adderal, clonazepam, trazodone, topimax,  (Valum, Prozac etc...)

The counsellor said I was obsessed with my binder. I was so frustrated I stopped writting in it and started missing appointments because i couldnt remember. Anyways, I went to my sleep doctor and asked for an mri, he was willing to do one to check for a tumor, they found a small sublenticular cyst(on the third ventricle of my brain), he had no idea what it was, googles the definition and says yah your fine anyways you look good Ill see you in January. ????

So now I'm back at my dr to give me an MRI to rule out MS and they look at me like I'm crazy, they ask, do you want to be sick??? Oh yes thats my dream. I'm so frustrated, I'm 29 I have a good education and had a good paying job that I had to take sick leave from 5 months ago so now I m making 40 % of my pay and Im still sick and now I'm broke and apparently I want to be sick as well. Does this sound like MS or fibromyalgia to you or anyother disease or issue you've hear of?

Im just so tired

[Curls]

Sorry to hear about the accident.  I had been thinking your level of clumby is high for CFS (although it may be it).  However, also get a check by an optometrist that specializes in vision training.  If your eye function is off, it may be the cause of the dizziness, and not vice versa.  Any old optometrist can't do it - need one with the special extra training in vision training.  Feel better.  Talk to the neurologist because with the concussion you can expect an increase in poor coordination for a while (maybe the two will cancel out and be normal :)? ).  

[sleepwanted]

Thank you so much... unfortunately I just got out of the hospital for falling down 13 stairs onto concrete, big concussion, some broken fingers, and fractures and bruises gallor, I wonder if they will still say my unsteadiness is due to depression, my dr looked as though he may actually take me seriously, we'll see.

[PlateletGal]

Good news. Canada is included on the Co-Cure's list !  = )

[sleepwanted]

I unfortunately live in Canada thank you though I really appreciate it

[PlateletGal]

Co-Cure.org has a list of physicians in every state who can both diagnose and treat fibro & CFS. You may want to check them out.

Good Luck.

[sleepwanted]

I went to see his counsellor today she said that the problem is that I am so negative and need to deal with my personal issues. I need to go back to work instead of sitting at home.

I told her, do you want to be responsible then when somebody dies, because I'm too tired to think proprly and can't provide proper information. She definatly thinks this is all in my head. I have an appointment with my GP next week so do you think I should push for a few things at one or one thing at a time. I think I sghould see a neurologist for the cyst etc. And the rheum. dr as you suggested? I know he is going to lose it. Now I just send him letters with what I think or need to avoid being ridiculed. Problem is where I live we have a shortage of doctors, so I am lucky to have one, even if he's an ars. I'll e-mail you about the otehr stuff.

[Curls]

...I knew I was forgetting something.  Alpha disruption is very common in CFS/FM.

[Curls]

"He said the only cure is a gun" - oh my g-d how gross.  That's a doctor?  It does sound like you're being labeled.  I'd never had confirmation that that process does exist.  From working in the field, you've seen it done before?  Can you give me the inside scoop on that?  Even with a label this is a network of clowns.  Ever notice how people who think alike tend to hang together?  It tends to make one think one is crazy when you hit one of these after another, but it's not an accident.

There is a lot that can help you, both meds and non-meds.  If you read through some of the posts here, I'm sure you'll start to get ideas for yourself.  The lack of balance is part of dysautonomias so that's definitely one thing to check into.  

[sleepwanted]

Oh my goodness thank you for the suggestions I am writting them all down as we speak. I felt as though I hit a brick wall. You want to hear the worst comment I received, my sleep dr. after the third sleep test (each revealed totally differant problems) said you have alpha wave interruption problems there isnt much we can do about this, so I sat their crying so much my chest hurt, I felt defeated. He said the only cure is a gun (he was joking) and he offered me one (as a joke) I didnt find it funny. My GP when I went to see him and he saw the sleep dr gave me the mri said why am I here anyways I am just the quarter back I'm  just here to collect info. He was extremely angry with me.  Its kinda of ironic that I work in the medical feild and I know what they are doing to me, I am now labelled and I am ignored when I go to er etc... I get the roll of the eyes, nice eh. I will start looking up your suggestions, if anyone has anything else I would be pleased to recieve it Thanks so much...

[Curls]

It sounds like CFS, or possible FM (very closely related).  Clumsiness like you described is a symptom of CFS, as are the specific language and memory difficulities you describe.  Lack of concentration is common and could be confused for ADD.  The fainting spells may be related to dysautnomias (neurally mediated hypotension and POTS).  I've written about them in prior posts.  You do want to rule out other possiblities, and a neurologist (not primary care) should decide if my MS testing is needed.  The drug mix alone says that your doctor isn't caring for you well.  If you have any option, it may be very good to start looking for another doctor.  The "you want to be sick" comment is rude and uncalled for, and is making me boil just hearing it.

If you read through prior posts for CFS and websites they refer to such as the Center for Disease Control's, you may start to see your symptoms come alive.  It will also give you an idea of other conditions to rule out.  It's hard to find a CFS knowledgeable doctor, but even a compassionate one who isn't that CFS specifically knowledgeable, can be helpful to sorting through this if you bring in the ideas.   Since rheumotoligsts diagnose FM, they may be a place to start.

[Meself]

I'm sorry for all your pain.  It does sound like fibro but it is really important you go to a rheumatologist (sp?)  They can test you to rule out other problems with similar symptoms.  This is a good place to start.  Ruling out all the scarry stuff first hopefully will ease the mind a bit.