latest update with me...

[LizardKing]

Last two years have been crazy.
Got a lot of new diagnoses but not the one I am pretty sure I need.
Had some odd stuff in 2015 that I blamed on meds, but at the beginning of last year I had an attack that lasted for over
three months with tingling, vertigo, dizzyness, severe ear ringing, itchiness all over, and after a lot of research
came to suspect I have had mild MS since 93.
Got two brain MRIs that show a lot of lesions, but the neurologist doesnt want to call it MS.
Reading the criteria I am older than 50 and that is part of why he wont call it, but barely over 50 in 2016.
Funny, been sick for 24 years now.
Read all over studies linking MS and vitamin D, got tested and viola, very low.
Auditory evoked potentials was low in the ringing ear, also suspicious of MS.
Visual was fine.
Keep in mind these test were over 6 months after the attack stopped, but I still have the ringing and tingling and itchy attacks.
Test from 2015 and 2016 show pretty bad sleep apnea, mixed and mostly central which can be caused from congestive heart failure (dont have),
opiate addiction (never was) or low and behold, lesion from MS is an uncommon cause.
Havent slept one good night since 1993.
Therapy isnt working for me.
Now have COPD and it took over two months of gasping for air with bronchitis to get that one and dont want it.
Looking back I do see how I have had attacks the whole time, just blamed it on bad FM days or weeks or months.
Seems now I am on track for it going from recurring/remitting into secondary progressive stage.
Will I get a diagnosis?
Not likely unless I get really messed up from an attack.

Soooooo, I went from one untreatable disease that is hard to diagnose to a even rarer one.
I was never totally convinced it was FM since I dont hurt all over all the time, I usually hurt in an area or two or three for periods of time then it moves to another area and all the odd and offbeat symptoms I get.
The fatigue is the worst of all and never goes away but does get much worse at times, "coincidentally" when I am having a lot of other problems.

[ronr]

Well congratulations NOT.  At least it is a diagnosis but then it is just a diagnosis and not a death sentence.  Now it is onward with trying to help yourself as much as possible in the only way you know.

[LizardKing]

Well congratulations NOT.  At least it is a diagnosis but then it is just a diagnosis and not a death sentence.  Now it is onward with trying to help yourself as much as possible in the only way you know.

Oh no, the neurologist gave me a diagnosis of "nonspecific demyelinating disease of the central nervous system" but only
after I gave him an MRI report that the ear doctor ordered based on the auditory tests.
He is pretty much worthless and I am waiting for another definite attack and then will get tests run by other doctors.
He wont let me tell him the stuff I experience, only wants to hear what I have "right now" and before I gave him the
report he said he didn't think he could do anything for me.
Few neurologists in this area so I have to wait until I have reports that essentially give me the evidence for a diagnosis and then
put it in front of a doctor willing to look at it.

I got mad when I had a bunch of symptoms come on and not go away in a few weeks and the doctors kept shrugging them off as nothing
and my research lead to the only thing it could be.
Then I started getting tests run and all of them are coming back as consistent for MS but some were months after the attack.
I do not have lesions that are clearly Dawson's Fingers that they want to see for MS, but I have lesions only in the areas MS attacks
and quite a few of them.

I corner them when they start giving me the blow off and tell them I am owed a diagnosis of what has made my life hell for 24 years.
So no, I actually don't have the proper diagnosis yet.
I was almost dead when I finally got my cancer diagnosis....

[ronr]

Damn you got some doctors in your area.  Non-committal and none of your symptoms bother them.

[LizardKing]

Damn you got some doctors in your area.  Non-committal and none of your symptoms bother them.

Isn't that typical?

[foxgrove]

Wow... so, apparently we now have a better idea of where doctors who graduate at the bottom of their class move to.  {sigh}  I feel for you, brother.  I wish there was a better Dx than MS but you're the one doing the more thorough research it seems.  Pity they aren't tired of you enough to send you to a big city neuro... do I hear a plan hatching???   

[LizardKing]

Last diagnosis was moderate COPD shown by a computerized breathing test so now
will need this powder inhaler rest of my life that is not cheap at all.
It is also why the CPAP and now oxygen therapy wont work for me, it triggers my asthma bad.
Funny, I never had asthma or COPD before the CPAP machine...

Had SSDI hearing yesterday and am very depressed.
Pretty much now waiting to get the bad news, wife will leave right after I get denied.
So after 28 MONTHS to get a hearing it is weeks of waiting to get the letter.
I cant take any more, next step is appeals council and I expect that will take years to get to see and I am not
up for it.
Cant.

[Robby]

Praying that the letter brings good news. It took me over 3 years from the beginning to the approval letter, so your ahead of the game. I don't have anything to say about the breathing problems, I don't have that much experience. Although I am in the beginning stages of COPD.

[foxgrove]

For your own sanity, focus on the moment.  Right now right where you are.  The future is not written and there is nothing to be gained from speculating on it.  Your mind is imagining the absolute worst outcome and that's not very likely to come true.  It's not likely to be Bela Lugosi but it's not likely to be Pollyanna either... it's likely somewhere in the middle.  One moment at a time.

I'm thinking of you and praying for a good outcome.  Don't give up, brother.  There really is a better day just around the corner.

[LizardKing]

Lawyer did a poor job with judge.
Still waiting for a judge's decision and pretty pissed off about THAT too.

Had appt with GP that I have seen the longest post cancer on the 2nd.
Day before a bit after I got up had really bad kidney pain, then pain in the left area where I used to have a bladder.
One hour and half later take a hydrocodone and pace and lay down and all that until it kicks in get to sleep.
Get up hours later about when meds were done and hurt, but not like before, say 4 instead of and EIGHT.
Start running a fever that goes up to 101.7 and feel feverish.
Why go to eRoom? Have doctor's appt tomorrow.
Cant sleep well that night due to pain, fever, and fact I slept thru the day.
Go see doctor tired as hell so I lay down waiting, because they take HOURS.
Temp is like 99.8 at that time. Four more night I run a fever over 101 though under 101 earlier in the day
and three nights were AFTER taking meds.
Then the doctor proceeds to show his ass and make sure I knew he thought I was faking and full of shit,
but gives script for antibiotics.
Now my results with the neurologist he recommended makes a LOT more sense.
and other doctors......

Really?
Again?
So now he think I am faking a kidney infection?
Only get like two a year thanks to having a f**king pee bag that ensures I will get LOTS of them.
I have MADE them do tests that show a lot of problems, but as usual facts and test don't matter against their OPINION.

I've said my thing a lot already: five years of serious symptoms of what turned out to be cancer, 8 doctors and one NP,
thousands spent on massively inflated charges due to not having insurance only to lose bladder in the end and almost dying
and having spent five years suffering more and more in pretty nasty ways.
Lets say lots of pain, lots of wet bed every night, lots of inability to pee during the day, and plenty of blood!

ALL NINE MEDICAL PROFESSIONALS WERE WRONG.

I WAS RIGHT.

and to top it all off a cheap urine cytology on the first day I saw a doctor about bloody urine, about $30, would have given a diagnosis of cancer
anytime afterwards too...


Still can't sue.
I paid the price the whole way and do daily.

Now the other issue I have had almost half my life, -maybe- FM, seems to be getting worse and worse.
Lots more symtoms and same ones but worse, last longer, and since my months of attack beginning of 2016 some I still have!
I get diag's of central sleep apnea.
Now thanks to trying to use a CPAP machine, months of bronchitis (havent had THAT in 30 years) and asthma attacks (NEVER had those before).
Naturally nurse and sleep doctor none of their patients had a problem like that with a CPAP machine, and they have plenty with COPD which was diag'd
after two months of severe bronchitis following three months of lesser bronchitis.

Soooo the doctor comes in and sees me laying down but as I am sitting up he says "Nap time is over"
Then asks me "so what now?".
Let me skip to the conclusion, my posts are always too freaking long anyway: he has been shining me on for YEARS and stabbing me in the back
with the local doctors.
I have 5 now and seeing a pulmonologist based on the test he did that showed MODERATE COPD, but he didnt refer me, got that from another doctor
based on sleep doctor nurse's rec.
That doctor seemed hostile at first and clearly had spoken with bad doctor, but after HE referred me to ear doctor and sleep doctor and both found problems,
he -seems- better but I dont f**king trust him.
He did run lots of basic tests like the other one did and we ALL know how that goes: mostly normal blood work.

Now I have to see this new doctor and guess how much of an asshole HE will be and which doctors HE talked to,
in order to see if anything can be done so I can used a machine to lower my severe mixed apnea.

Clearly modern medicine is broken beyond repair.

Even before I filed for SSDI my symptoms were mostly ignored and the straight up incompetency of doctors costs them nothing
and you have literally no legal recourse unless blatantly and undeniably screw up in a way a lawyer can make a case.
Even in the aftermath when you are left with a lot of problems you get little to no help, unless more and more pills that leave
you less and less capable is "help".
I worked for a bit in the nuclear industry, which I blame the cancer on and filed for that but aint expecting them to pay.
Cancer symptoms got to visible blood at age 43, started nuclear work at age 32.
Statistics of people being diagnosed with it at 43? 1.4% (ages 35-44)
I was diagnosed at age 48 thanks to what can only be called incompetence and % = 6.3% (ages 45-54)
Average age of men diagnosed with it?
SEVENTY THREE
They blame one pack a day smoking, disregard me telling them I worked at the nuclear labs with lots of bad stuff in them...

Anyone wanna bet I am YET AGAIN right about a lot if what I have and this whole pack of doctors is wrong AGAIN?
Unlike them, I can and will change my mind of what I have when tests and symptoms show something else.

/RANT OFF

[foxgrove]

Doctors...  yeah... nuf said.  That's a really sad commentary on the doctors you have seen.  Hope that they finally come to the right conclusion, wish they'd listen to us rather than simply running more tests.  Not sure how they expect to collect good information if they keep discarding the best source of first person info that they have...  you!

Keep fighting, brother.

[Robby]

  Hopefully you will manage to find a different dr, one that will listen to you, and you can tell this one to kiss where the sun don't shine. 

[denny]

Sucks! 

[LizardKing]

I used to be a zookeeper and for a while I worked as the medical clinic keeper.
Two vets worked there.
About a 50%+ kill rate when you sent an animal to the vet.
Even the acting director when talking to me would say "How it is going with Dr Death?"

Animals can't talk.
Though, if you know their behavior you can tell some things but still.
They don't talk...

[foxgrove]

They don't talk even though you are listening... we talk nonstop and most doctors don't listen.  Hmmmm... maybe that explains some of the 50%+ totally sucks rate with us.