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Author Topic: Three months to write this  (Read 5360 times)

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Offline MarcoPoz

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Three months to write this
« on: August 09, 2010, 12:36:07 PM »
So...

I haven't been doing well.  My docs are completely confused and keep sending me from one specialist to another.  For the last year/year and a half, I've dealt with some odd symptoms that include feeling like I have the flu every day.  We thought I was having glucose dumping or was in the onset of diabetes--nope.  Glucose levels average in the normal range, but do have some weird swings now and then.

Basically I get 'sick', puke, get the 'runs', sweat big-time and usually on just the right side of my head (interesting, eh?) heart beat speeds up, killer headaches, sometimes dizziness and these all slowly get worse until they break.  I'm left afterward feeling like I just sprinted 5 miles. And STOOOOOPID.  Last night I freaked because the milk jug was on the counter.  I knew it didn't belong there, but had no notion of how this happened or how to fix the problem.  My partner reached over and told me I had just taken it out to get to something behind, no more than a few seconds prior to my 'freak out'.

We've checked everything they can think of in my endocrine system: nothing out of whack.  Now its back to neuro for more brain scans etc (I have migrane episodes that look like I'm in the middle of a TIA).

Like I said--more than a year of this and I'm getting very very tired.  My intellect is dulled and my physical health is going to pot.  I'm a competitive athlete and this is really disturbing me.

I've had to adjust my work schedule so that I can work from home on days that are really bad, but I can't keep this up for long without having to make a more concrete plan with my employer.  I'm thinking about disability--perhaps I'm being short-sighted?

Anyway,  I'm not posting this for advice, but if you have anything you can offer, I'd be happy to hear it.  I just wanted to vent a bit about my situation to people who have dealt with HIV for a long time.

I don't have answers or even a plan, other than to keep hoping the next specialist will find the cause.

Right now I'm in the Zen of it  ;)  When I'm sick, I get sick; when I'm tired, I try to rest.

It just sucks.

 

Offline bear60

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Re: Three months to write this
« Reply #1 on: August 09, 2010, 12:41:15 PM »
I'm sorry to hear you are having these problems.  I wish you good luck solving these problems.

Just out of curiosity, have you eliminated opportunistic iinfection? 

Hugs

Joel
Poz Bear Type in Philadelphia

Offline MarcoPoz

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Re: Three months to write this
« Reply #2 on: August 09, 2010, 12:49:49 PM »
Yep.  Nothing OI is showing up in my labs. Thanks for your kind words!  Its good to know others understand when you just feel like crap  :)

Offline c78

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Re: Three months to write this
« Reply #3 on: August 09, 2010, 02:43:37 PM »
Hi Marco,

Sorry to hear about what you're going through. Hopefully one of the specialists can come through and solve the mystery for you. Fingers crossed for your feeling better soon!

Chris

Offline aztecan

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  • 29 years positive, 57 years a pain in the butt
Re: Three months to write this
« Reply #4 on: August 09, 2010, 06:02:06 PM »
Hey Marco,

I'm sorry you are going through this. It sucks.

This is just a shot in the dark, but has your doctor measured your creatine phosphokinase, commonly called CPK or CK?

High CPK levels can be indicative of a variety of things, including some things involving the brain. I have no idea if it would even be applicable to you, but when you said you felt like you had the flu every day and would become very fatigued, it rang a bell with me.
That is how I felt when my CPKs were very high. I didn't have the runs, though.

Anyway, it is just a stab in the dark.

I hope you find the cause soon. I will send positive energy your way.

HUGS,

Mark
"May your life preach more loudly than your lips."
~ William Ellery Channing (Unitarian Minister)

Online Jeff G

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Re: Three months to write this
« Reply #5 on: August 09, 2010, 06:14:27 PM »
Hi Marco , mystery illness ... don't you just hate them . I'm sorry you have to go through this please keep us updated .

I have had my share of mystery illness and it can be so frustrating . It took years for specialest to figure out and diagnose my chronic pain problems , I had almost given up when I finally got my answer . Good luck and stay strong !!

Offline denb45

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Re: Three months to write this
« Reply #6 on: August 09, 2010, 07:39:39 PM »
Hey Marco  ??? hope u get to bottom of this?  have you ever had problems with your kidneys, like kidney stones, or like Mark mentioned, high CP levels, I've had this for very long time, and used to get SICK a lot
this past yr. now I know what is wrong with me, I found out that I have Stage 3 kidney disease w/ high CKP levels, now I understand all of my sickness, ( some of it sounds a lot like yours) I'm not saying you have this, I'm not a doctor, but, have THIS Checked-out, I'm glad I did, I feel better but, now I'm on a low sodium diet for the rest of my life, no more salty food & drinks for me, I never knew that changing things
I used to like to eat, but cannot anymore really made a big difference in the way I now feel, I have no more headaches & diarrhea just removing SALT form my daily diet :)
« Last Edit: August 09, 2010, 07:47:29 PM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline AlanBama

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Re: Three months to write this
« Reply #7 on: August 11, 2010, 10:56:39 AM »
Sounds like you're having a really bad time with things right now; I certainly hope your doctors can get to the root of the problem, and SOON !

I hate "mystery illness"; it's not nearly as much fun as we used to have playing "mystery date"  ;)

Keep your chin up honey

Hugs, Alan
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline MarcoPoz

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Re: Three months to write this
« Reply #8 on: August 11, 2010, 11:14:35 AM »
Thanks all for your kind words and support.  I don't like to share much about my own 'stuff' and you've really made this easy.

Update:  See the neuro doc on Monday--brain scans and such.  I'm sure they won't find a thing  ;D

New issue:  Last 2 days my right leg keeps going numb--from thigh down.  Sitting, standing, walking, sleeping, doesn't matter.  Who knows, maybe a nerve tweak, maybe something else.

Offline denb45

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Re: Three months to write this
« Reply #9 on: August 11, 2010, 02:21:34 PM »
Thanks all for your kind words and support.  I don't like to share much about my own 'stuff' and you've really made this easy.

Update:  See the neuro doc on Monday--brain scans and such.  I'm sure they won't find a thing  ;D

New issue:  Last 2 days my right leg keeps going numb--from thigh down.  Sitting, standing, walking, sleeping, doesn't matter.  Who knows, maybe a nerve tweak, maybe something else.
MarcoPoz, that could be a lot of things ,seeing the neuro doc sounds like a step in the right direction tho, I only hope the best outcome for you, and sharing health problems in this forum can be helpful , let us know what happens and keep us all up-to-date  ;)
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Joe K

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Re: Three months to write this
« Reply #10 on: August 12, 2010, 01:06:36 AM »
Hey Marco,

Sorry to hear that things have been so rough. How frustrating to be so sick and unable to find the cause. You say this has been happening for over a year and I wonder if this has any effect on your mental health. Some of what you describe sounds like anxiety attacks, whereas others sound like they may be related to either the heart or respiratory system. I would certainly check your sodium levels, because I can tell you, from personal experience, that too much salt can really mess you up.

I hope you can find the source, but until you do, please continue to come here and vent as you see fit. One advantage of being among relics, is we understand how you feel and we all need to vent at times. It's not like you are whining about not winning the Lottery, you are expressing emotions that we have all experienced. We are here for you, if and when you need us.

Joe

Offline MarcoPoz

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Re: Three months to write this
« Reply #11 on: August 25, 2010, 09:29:17 AM »
Thanks everyone for your emails and PMs!!  Here's the update:  MRIs and CAT scans ordered.  More blood drawn for various tests.  ID Doc thinks its neuro, Neuro thinks its from head/neck injuries plus the 5 concussions I've had, Psych thinks its some form of anxiety/PTSD mumbo jumbo from being a combat veteran AND living with HIV this long...

Sometimes you can have access to TOO many specialists  ;)

Offline AlanBama

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Re: Three months to write this
« Reply #12 on: August 25, 2010, 10:36:25 AM »
Sometimes you can have access to TOO many specialists  ;)

Amen honey!  And they all want to prescribe, prescribe, prescribe !   This is how we all end up taking 25 or more Rx's at a time.....

Keep us posted.   HUGS
"Remember my sentimental friend that a heart is not judged by how much you love, but by how much you are loved by others." - The Wizard of Oz

Offline denb45

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Re: Three months to write this
« Reply #13 on: August 25, 2010, 11:38:08 AM »
Amen honey!  And they all want to prescribe, prescribe, prescribe !   This is how we all end up taking 25 or more Rx's at a time.....

Keep us posted.   HUGS

Speaking of TOO many Specialists, I've seen way too many alone this yr. the good news is they didn't find ANYTHING wrong with me, I'm sure my State Insurance Pool loves this cause they are the ones footing the bill for all these Specialists and Medicare parts A & B picks up the rest :-\
« Last Edit: August 25, 2010, 11:40:54 AM by denb45 »
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline MarcoPoz

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Re: Three months to write this
« Reply #14 on: September 07, 2010, 10:32:58 AM »
Scans are happening today.  I'll let you know what they find--IF they find anything.  Symptoms still occur daily.  Mostly its the odd "feverish" stuff added with having day/night sweats but only on the right side of my head and body.  After these episodes, I'm extremely fatiqued, have a hard time concentrating and just want to lay down.


Online Jeff G

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Re: Three months to write this
« Reply #15 on: September 07, 2010, 10:41:34 AM »
Good luck with your scans today . I'm hoping all turns out OK . Please let us know when you get your results .

Offline Jeffreyj

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Re: Three months to write this
« Reply #16 on: September 10, 2010, 07:04:22 AM »
Sorry to hear about this, Marco.
Just a wild thought: Do you have any inner ear problems, or trouble with your balance. ear and balance can really mess with you, and fatigue is one of them.
Good luck.
Positive since 1985

Offline lforsyth

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Re: Three months to write this
« Reply #17 on: September 13, 2010, 08:44:04 PM »
I hope aztecan had something, he's really insightful. I've gone through strange things in the past before there was a forum. Things can be scary when you've survived so much already. I hope there is good news soon.

You have all my good thoughts that the problem can get sorted out.

Love,
 Larry
Tested POZ in 1986, knew there was something wrong in 1985. 04/2010 CD4: 975 Viral Load undetectable. Prezista, Norvir, Truvada, Acyclovir, Plavix, Lisinopril, Metoprolol and a bedtime snack of Lipitor (YUM)

Offline MarcoPoz

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Re: Three months to write this
« Reply #18 on: September 30, 2010, 10:19:09 AM »
UPDATE:

Brain scans are CLEAR!!!!!!!! ;D

Had to do a full neuro-psych eval though which was a colossal waste of time.  If I have to take an MMPI ONE MORE TIME!!!!! (worked in military intell) Anyway, good thing is that they are tracking my memory issues and attention issues that coexist with the hot-flash melt downs I have.  Something tells me that this may really be related to anxiety that I don't even notice??????  Who knows--on to more testing.


Offline denb45

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  • "1987 Classic Old School POZ+"
Re: Three months to write this
« Reply #19 on: September 30, 2010, 10:49:54 AM »
UPDATE:

Brain scans are CLEAR!!!!!!!! ;D

Had to do a full neuro-psych eval though which was a colossal waste of time.  If I have to take an MMPI ONE MORE TIME!!!!! (worked in military intell) Anyway, good thing is that they are tracking my memory issues and attention issues that coexist with the hot-flash melt downs I have.  Something tells me that this may really be related to anxiety that I don't even notice??????  Who knows--on to more testing.



Thanks for the update, the all clear is very good news, I think the anxiety has a lot to do with this, as I and a few others in this forum has Post Traumatic Stress Disorder, however I'm not a Doctor orTherapist
but, anyway this is a good read tho...

https://health.google.com/health/ref/Post-traumatic+stress+disorder
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline Theyer

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Re: Three months to write this
« Reply #20 on: October 08, 2010, 04:43:51 AM »
Hey Marco,
I am confident that from the bits off info you leave on your posts that you will get to the bottom off your health troubles and deal with it.

Keep on keeping on.

t
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline MarcoPoz

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Re: Three months to write this
« Reply #21 on: November 01, 2010, 01:53:45 PM »
And the answer is.....

Drum roll please...............................


"Ummm, nothing organic...no more damage other than what was there from previous concussions....must be something like anxiety?" "Cognitively, you're off the charts.  Some might say there's some PTSD issues there, but I don't know".

U G H !!!!!! 

This was my 'diagnosis' after 2 years of referrals and tests!  This (anxiety issue) is EXACTLY what I TOLD them I thought it was when we started this game! 8 years of combat---19 years living with HIV/AIDS--lost over 60 friends etc.  Of COURSE my nervous system is a bit 'tweaked'.

I said--"Great, give me some damn xanax and I'll go about my way".  The response:  "Asking for medications by name, can be a sign of drug seeking behavior".

I hate these fucking quacks!

Oh, well--at least they've stopped scanning me and poking me.



Offline Snowangel

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Re: Three months to write this
« Reply #22 on: November 01, 2010, 02:19:23 PM »
Marco-
Sorry to hear that basically you got nowhere.  That must be frustrating but I have to give you props for not hauling off and smacking the doc when they made "ask for scripts by name" comment.

Does that mean they didn't give you anything?  If you are "off the charts" and they let you walk out the door with nada, I hate to say  you need another doctor because I don't want them to think they can poke and prode you even more, but can't you say something to the doc like" just because you have knowledge of meds doesn't mean you have drug seeking behavior sometimes it  just means you were advocating for yourself and you did some research, asshole." You should probably leave the asshole off.

Stay strong
Snow
Of all the things you wear, your expression is the most important

The heaviest thing you can carry is a grudge..

One thing you can give and still keep...is your word.

One thing you can't recycle is wasted time.

Offline MarcoPoz

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Re: Three months to write this
« Reply #23 on: November 01, 2010, 02:52:03 PM »
Thanks Snow,

No the 'off the charts' comment meant that my cognitive skills, memory etc are all VERY good---no worries about dementia or anything like that yet.  No additional damage from my multiple concussions.

But no meds.

Yeah--ridiculous eh?  I self-diagnose with something related to anxiety 2 years ago, but the docs shove me out of the way, run 2 years worth of tests via 4 specialstis and taaaadaaaaahhhh...come up with the ORIGINAL answer I had and just wanted treatment for----

BUT....

because I happen to need to have an updated PDR at hand and knew that an anti-anxiety med was probably a good place to start---I'm DRUG seeking!  So if you need a med--you have to wait and be diagnosed--then you get a med---unless you ASK for the med--then you DON't get the med...

Anyone seen or read Catch 22 lately?  Talk about a Usarian proposition?

Online Jeff G

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Re: Three months to write this
« Reply #24 on: November 01, 2010, 03:17:56 PM »
Hi Marco ... I had a 10 year battle with scores of doctors trying in earnest to get diagnosis and treatment for a chronic pain condition . As you may can imagine now what chronic pain sufferers have to go through to get treatment , they all think you are seeking drugs .

One tip I can give you that worked for me was to have your own stack of medical records and receipts of the co-pays you have incurred with you to fan out in front of them . When they saw my personal stash of documentation they stopped questioning my motives .

Its a shame we have to prove ourselves to some doctors when they don't have a blood test or broke bone to see but it is what it is and I'm sorry you are in this predicament .

Offline Theyer

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Re: Three months to write this
« Reply #25 on: November 03, 2010, 12:51:06 PM »
Marco I am Glad you got the all clear for any new problem but feel very angry at the patronizing response you received, its not good enough as well as catch 22 it has the sensitivity  off nurse rackget from one flew over the cuckolds nest.
What will be your treatment plan ?are you still having the symptoms as often? was it a VA hos?
I am shocked that anyone can make a diagnosis off drug seeking behaviour based on one request surly that is seeking symptom relieve behavior.
anyway good luck with it all
mhtv
"If we can find the money to kill people, we can find the money to help people ."  Tony Benn

Offline denb45

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Re: Three months to write this
« Reply #26 on: November 03, 2010, 01:15:55 PM »
I've had a lot of ID-Doctors in my 23 yrs of this disease ,and I can tell all of you this, as I'm sure other can also say most doctors just don't think side-effects are a big deal, since most of them are hard to prove, I have taken everything under the sun for them, and none of them were very good are even worked, and we all know that treatment for anything that a doctor cannot see via blood work are other means, kinda get's the back seat for treatment, it's the red-headed-step-child ugly under side of having this disease, I'm still fighting with all my doctor's on a lot of health issues I currently have, but, I'm not gonna give up here, no matter how many of them try to diminish my issues, and a lot of them might think I'm crazy, but, hey having this disease for as long as I have and battling all of the disabling side-effects is no easy feat, it's hard work.......
"it's so nice to be insane, cause no-one ask you to explain" Helen Reddy cc 1974

Offline MarcoPoz

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Re: Three months to write this
« Reply #27 on: January 04, 2011, 09:22:13 AM »
Update:

The Neuropsych specialist who can make the 'final determination' as to treatment says they can squeeze me in in May...

Ain't managed care fun? ;D

Good news--no tumors or lesions.  Nothing amiss as far as brain structure etc.  No wacky hormonal imbalance (slight testosterone decrease, but hey--I'm 45)  I.Q test was actually impressive--no cognitive fall off.

Since they think this is all related to stress--I decided to by-pass the "wait until may" specialist and press my Primary and ID docs to respond.

Offline lipoenvy

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Re: Three months to write this
« Reply #28 on: January 06, 2011, 11:01:43 AM »
Wow, this sounds very difficult to deal with.  PTSD sounds like a real possibility, but traumatic brain injury even more so -- and TBI frequently doesn't show up on CAT scans or MRIs.  Has this possibility been considered and eliminated?

I hope you get some effective medical care soon!  Seems it has been sorely lacking.

 


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