How many Dx's have you gotten

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LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/8/2009 4:53 PM (GMT -7)   
Even if they are right or wrong how many Dx's have you gotten?
 
Just curious..  I have had a few wrong ones that last couple of years on top of the right ones... yeah
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 4/8/2009 5:09 PM (GMT -7)   
I really wish I had a diagnosis. But I don't. No one knows what is wrong with me. We know some things, but we don't know what they mean. It's like a puzzle, but we haven't gotten any of the pieces together yet. We have theories, but most of the theories are nothing more than guesses. It is incredibly frustrating not to know. I think I'd be more at peace if I had a diagnosis, whatever it may be.

Skeye

Post Edited (skeye) : 4/8/2009 10:15:18 PM (GMT-6)


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/8/2009 6:21 PM (GMT -7)   
LLPLUV
 I am not exactly sure what you mean, so I hope what I am writing is what you are asking about? Before I was finally diagnosed with the Herniated disc at C6/7 I was told I cancer, I was a malinger and it was all psychosomatic,(Great military Doctors that they are, standard diagnoses for a GI!) after they found the herniated disc and done surgery the civilian neurosurgeon, diagnosed me with degenerative disc disease! Over the years several military doctors have said they thought I might have MS due to vision problems I was having, and when I developed swallowing  and gagging problems 2 years after the disc fusion, the military doctors were stumped, and started givig me the run around,  I wrote my congressman and after that they then  said I was malingering again and said it was psychosomatic, until the psych Doctors said that it wasn't and when they did surgery to remove my tonsils, I was still gagging and having Pharyngeal spasms while under anesthesia, then they said it was the result of nerve damage from my disc fusion,there was allot of disagreement about that too, but one civilian speach pathologist kept telling me and the doctors that she thought I might have MS because these symptoms came out of no where stayed a couple of month then went away but came back a few months later for a few weeks and the  went away for a few years! Anyway in the last  10 year I have developed  numbness and tingling in my extremities, foot drop, balance and walking difficulities, and right shoulder drop and difficulties using my arms and hands and muscle spasms everywhere,  right shoulder drop, and sometimes speech problems along with the swallowing and gagging difficulities,  allot of my symptoms come and go, but often when they leave I have a deficit!  I was diagnosed with Parkinsons  alittle over 2 years ago and put on Senimet and Lodosyn 4 times a day, just recently the Parkinsons specialist said I do not have Parkinsons and have weaned me off the medications, several Doctors still say they think it is MS, and a couple have mentioned Stiff man syndrome?? But now that Parkinsons is off the table is again Limbo land!
 
I am like skeye I really wish I had a diagnoses. the firm diagnoses I do have though is  Degenerative Disc disease with multible herniated disc and bone spurs, Chronic Pain syndrome, Osteoarthritis in my entire back  but especially bad in my neck and some joints,(knees are really bad)! possible Fibromyalgia, Ulcertive Colitis, and Complex Sleep Apnea, MVP, and High BP.
 
White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/8/2009 7:26 PM (GMT -7)   
Awe
White Beard the military doc's are not always the best..been there, anyways sure hope you can get a good civilian doctor soon...
Keep us posted, hun..
(((((((((((((((((((((HUGZ)))))))))))))))))))))))))))) to all
Been to Tinker, Lackland, Falcon, Peterson, DLI in the Presidio, The Army bases had better doc's then the USAF doc's, Ft. Carson
had some good doc's.
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/8/2009 8:46 PM (GMT -7)   
Chartreux
Boy have you got that right , but what is this "not alway the best" were they or are they ever? rolleyes I personally alway thought he the Navy had the best Doctors, they are the ones ones who saved my career in the Air Force, The Army in Germany and the Air Force in California (Travis) miss diagnosed my knee and had me wearing a knee brace for the rest of my life, which would have ended my career in the Air Force, the Navy Docs at Oak Knoll did arthroscopic surgery on it an I was up walking in a couple of days and threw the knee brace away! The Army Orthopedic surgeon At Ft. Wainwright in Fairbanks Alaska is the one that told me I was malingering when I had a massive herniated disc at C6/7 And the Air Force Doctor up there is the one that manipulated me,( he was an osteopath) and darn near killed me! Ah Peterson is a beautiful base! Colorado Springs nothing quite like that place! So you have seen a few places too?

White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV

Post Edited (White Beard) : 4/8/2009 9:49:04 PM (GMT-6)


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/8/2009 10:08 PM (GMT -7)   
LL,
Over the years I have had so many diagnoses I literally can't remember them all. The lastest I saw on the supplies for my TENS unit was adhesions on the nerve root (this was post LS fusion surgery). I've had chronic cervical spine problems and there were buligng disks there back in the early 90's, but I manage the symptoms on my own. Have had carpel tunnel surgery on both hands. Of course had "severe DDD" in my lumber spine, herniated disks (reason for the fusion). Radiculopathy I think is one (sciatic pain down leg). I know there are more! Sometimes it matters for treatment purposes, and sometimes I just throw my hands up. Now it appears I'm starting with some kind of stomach acid thing - probably pushed over the edge by too many M&M's (seriously!), so I hope to get that diagnosed and treated before my insurance runs out. Yikes! It's a wonder we're still alive!

PaLady

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/9/2009 7:33 AM (GMT -7)   
White Bread that was exactly what I was asking. I asked this question because sometimes I feel doctors just pull dx's out of a hat until you get another dr and he cancels one and labels you as another.
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/9/2009 7:42 AM (GMT -7)   
PALADY Don't you think it would better if we didn't have Dx's and just treat the person and the ailment. I'm just having issues with going to my new doctor at the pain clinic he even showed me the dead areas in my kidneys that dead tissue is falling off and he knew what it was, but my nepherologist and two urologist didn't see the conection. I'm so glad I took all my records scans and surgical pic included.

I'm just getting so upset at times that it seems they won't treat you outside of a pain clinic if you don't have a Dx. Or have a Dx but PCP's push it off onto another doctor. To write scripts.

Sorry I just woke up and my kidneys are killing me!! Alittle edgy can you say.

PALady my husband has acid reflux and he HATES it. But hes stubborn and never follows up on anything.

White Beard How did you come about getting a Dx for parkensons??????? Just curious, my hubby has the desert storm ailments and they have thrown that one around along with Early Neurologiscal Aging because he shakes and twitches alot.
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 4/9/2009 8:06 AM (GMT -7)   
LLPLUV
Parkinsons runs in my mothers side of the family, and I have tremors, and my gait I guess, I actually went to this one neurologist for Sleep Apnea, he was suppose to be the Sleep Apnea specialist! I had been seeing his cohort the other neurologist for my neuro problems. Anyway he just took over my case completely, and after doing a bunch of test he came up with that, I didn't agree with him and told him so, but he insisted he wanted me to go on the meds to at least see if they helped, I never seen that they did any thing one way or the other, but he claimed it was helping me! It was after he got sick and I had to go to another Sleep Apnea specialist that I found out he was mistreating me for my sleep apnea, and then I started having second thoughts about the other stuff he had been treating me for. Next thing I know he is gone, no one will say what happened to him, and they got two new neurologist in one of them is who I am seeing now!

Your husband needs to be really carefull about Dx especially from ailments associated with desert Storm, no one wants to admit to anything when it comes to GI's and the problems they are experiencing from the war! I would be leery about just any thing especially if it is coming from the miltary or the VA.

Good Luck to You
White Beard


 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/9/2009 8:27 AM (GMT -7)   
He is very leery. He has stopped using the VA and used my insurance on the outside. As like I do with my records I keep copies of his also. Hes a stubborn man!!!! He has tremors in hand, stomach his eyes twitch all the time. While he is sleeping he twitches like hes jumping out of airplanes. He has acid reflux, stomach aches, rashes all over his face and sometimes scalp, very low testosterone, rashes in the armpits and groin that have left lesion scars, headaches and a bunch I'm leaving out. But he still works 50 to 70 hours a week. He always tells me if he lets things go he will fall into the pit. If that makes any sense.

The only thing the military has admitted to for this ailment is Pesticide Posioning accidental of course. They said the soldiers were not trained well enough on use of this substance. My husband did say they used mayo jars with the chemical in the corners of the tents....

I still don't believe it. He used uranium head bombs all day long dismanteling Iraqi tanks....
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 4/9/2009 8:44 AM (GMT -7)   

LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/9/2009 9:01 AM (GMT -7)   
Bionic woman... All I can say is WOWOWOWOWOWOW
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 4/9/2009 9:46 AM (GMT -7)   
Wow Bionic, now that's way to many...lots and lots of soft
hugz for you Bionic...
I have 10 so far and getting more MRI testing, I had an aunt die of ALS,
so that's one of the things these next set of mri's will rule out, but enough about me..
soft hugz to all...
(((((((((((((((((((((((((((((HUGZ)))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's and Ocular Migraines

********>^..^<********>^..^<********>^..^<********


LLPLUV
Veteran Member


Date Joined Mar 2009
Total Posts : 1158
   Posted 4/9/2009 9:52 AM (GMT -7)   
I guess I forgot to put in how many I have.

Boy I'm pulling a PALady...lol

I have 8 now....
Chronic Kidney Stones, PKD (Polycystic Kidney Disease), Chronic Kidney Failure, Severe Hypertension, Urological RSD


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/9/2009 12:06 PM (GMT -7)   
smilewinkgrin

PaLady

BionicWoman
Regular Member


Date Joined Jul 2008
Total Posts : 243
   Posted 4/12/2009 1:00 AM (GMT -7)   
I think my favorite is lumbalgia. That one came from a doctor that seemed to really enjoy using large/unusual words. He also labeled me with pseudoclaudication, which I don't actually have. I think he just liked saying that word too. wink

I had a run of real boneheads for doctors, which is how I ended up with so many different diagnoses. One bonehead would label me one thing, then the next bonehead would label me the opposite, but they all stayed on my record. I was shocked the first time I saw them all listed! smhair

Post Edited (BionicWoman) : 4/12/2009 2:04:08 AM (GMT-6)

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