Losing it

[navydad]

As most know,, I was in the hospital for MRSA and a bunch of assorted other infections,, sent home with a pic line for antibiotics and antifungals,, fast forward to now,, was in hospital again for a week,, told tem my legs were getting weaker by the day,, constant spasms,, cold intolerant,, and my mouth has stopped making saliva,, just some kind of slimy stuff,, which is hard to cough up,, the ENT that saw me in the hospital said your niunses look fine,, its my throat you idiot,, he didnt look,, as for the legs,, they did EMG and spine MRI,, at first I was told I suffered a spinal stroke, so being a good patient,, I told my PCP,, ho said,, you need pain meds for this,, ok,, I;ll take them,, so on monday I see the same neuro,, who tells me,, after looking furter and talking to other raiologist,, they now say I didnt suffer a spinal stroke,, so in the meantime,, my mouth is constantly dry, my lips constantly burn,, and mylegs get weaker,, a burning weak that drives into the muscles and the bones from teh hips down, and like somone else wrote,, it looks like I have a eye infection going on,, little white pus filled sacs inside the eyelid, so the neuro who was concerned about my legs,, sends me for a chest CT,, LOL,, it makes no sense,, oh while I was in the hospital,, they retested me again for SS,, of course it was negative,, so I called the rheummy that origannlly said I have it and told them a lot of doctors are questioning your DX of me,, I wasent supposed to have a appt with him unli the end of Feb,, they moved it up to friday,, but in the meantime,, they took me off lrica, plaquinel,, and all other meds,, I told tem in te 6 months I took all those meds,, it made no differene in my pain ,, they discussed methotroxate,, but never followed through,, only follow through I got was,, maybe its time to see a shrink,, so while the lady shrink was telling me this,, i coughed up a bunch of the stuff that drains down my throat,, handed her a mirrow and said,, look at my throat,, it looks like raw meat,, she asked,, have you told anyone about that,, it was then I wished I had a ball bbat,, yes you fool,, I told everyone I could,, I think I made some enemies, i demanded to see a patient advocate,, it was about a hour later they said they were sending me home,, I asked at what point do I come back, is it when I  have to crawl in here or when i am broguht there by the coroner,, or when my eyeball falls out from infection,
  Its bad enouigh you have to live like this,, but the sad part is trying to explain pain,, and all the weird stuff that goes with it,, when you tell people that you cant tell temperature differences in your legs whn you go outside,, they give you the stupid look,, I swear my internal thermostat is broke,, my new normal is about 96,, anything above 98 and I feel it,, try explaing tha to a doctor,, I did,, and got the ,, well this guy might just need a white long sleeve jacket,, its a b***h living day to day,, and very frustrating,, swalloging has become a issue now,, I need to hold my head perfectly striaght to swallow,, been running humidifiers constantly just to try and keep my mouth moist,, and last  but not least,, the Infectious disease doctor asked,, when do you want to go back to wokr,, i told him,, hey,, you told me I cant go back with a pic line in,, he said oh thats right,,, I think friday wheni see the other rheummy,, I am going to demand that he follow through ojn what he said before, get me to UPenn in Philly like you promised,, that was ack in Oct,, in teh meantime I think its time to apply for SSDI,, and i contacted a lawyer about what my employer did when they found out I had a MRSA infection,, had people comein and santize my work place,, my desk,, my tools,, put up cautin tape around my wrork truck,, its like i was a  leper,, sorry for the long post, just needed to get it off my chest,,

[genko_b]

Hi Navydad:

It is good to hear from you again.

It is just amazing what you are having to go through. If they made a movie of your life people would say no, it is not believable; no doctor could be so incompetent, much less more than one!

There must be somebody somewhere who can help you get to a better condition so you can begin to deal with each of these issues. I sure hope you are able to get to Penn to be seen. Also, good luck with the SSDI. Definitely use a lawyer. They may be able to get some traction with the doctors as well.

Take care,

Genko

[Nathan]

Hi navydad,
It's good to hear you're back. I was wondering where you had gone.
That's the thing about hospital doctors, it's really hard to find good ones. I've nearly been in fist fights with a few of em (not my doctors, but still).
Well I'm sorry to hear you're having such a rough time. Here's to hoping and praying that this year will get better for the lot of us.

~Nathan

[Joe S.]

I can relate to most of what you are saying. At least they have not put sulfuric acid into your spine yet. This is why I decided to go with alternatives. It is like the doctors have no f***ing idea what they are doing and have never learned to read so the do not look at the results of the tests.

I may have this wrong but they could be getting paid for the number that they kill. I know that the drug companies lie on their testing to get their drugs certified. Very BAD Medicine and science.

[JannaLee]

Navydad,

I support your decision to try for a comprehensive evaluation at UPenn.  Your case is complex and somewhat exotic and likely beyond the abilities of the physicians you have been seeing. 

It's not funny that you may be right about your future visit to the hospital could be to see the coroner.

I understand the frustration and all that you are going through.

Janna

[Seeker]

Howdy Navydad, you sure have been ran through the ringer.  I hate it when a doctors won't admit they don't have a clue.  It seems they always fall back on, you need to see a shrink, cure.  Going to see a Lawyer to start the ball rolling for a SSDI claim, was a wise move.  I hope the UPenn study will finally give you the answers you need.  I admire how you keep going, in spite of all obstacles.  That's the kind of example that helps us all with the frustrations we are facing.  Its sad how your place of employment is reacting to your situation.   People are afraid of what they don't understand.  Anyway thanks for sharing your adventures with us.  Please keep us posted.

Seeker

[eyeamdry]

In the meantime, Navydad, you can begin to sort your medical files and put things in chronological order.  This will help you when you do get ready to file your paperwork for SSDI.  It is a tough thing to manage, but you can.  The sooner you start, the less pressure you will feel.  Good luck.  One thing to remember......get ALL of your medical files from ANY type of doctor (including mental therapist) that you've seen in the years since you've been sick.
Lucy

[ktfabian]

Navy Dad-

I'm SO sorry to hear of all you have been through.  It's very unfortunate that doctors aren't taught in med school to say, "I'm not really sure what's going on so let's find someone who does."  I've had one doctor like that and my workers' comp case manager tried to have him removed from my case because she said we were forming too close of an attachment to each other.  HAH!  She didn't like that he kept sending me to specialists.

Anyway, I wasn't in as bad shape as you are now, but I was hurting pretty badly when I  referred myself to the Sjogren's Clinic at University of PA. My first appointment lasted almost an hour, we went over each and every problem I was having (the doctor even commented that my rheumatologist here at home had made a mess of my care!) and he plotted a solution for each.  He ordered enough tests for each of us here to have one, and called me when the results came through and explained everything. 

I was stuck on a Friday evening drive time a few weeks before I even saw him, I forget now exactly what was going on, but my local rheumy wouldn't take my call.  In desperation, I called the Dr. in Philly (I live near Wilkes-Barre) and I could hear the traffic in the background as this doctor who'd never seen me did what he could to get me through til my first appointment.

If your doctor won't refer you, will your insurance let you self-refer?  If not, I'd contact your insurance and explain the amount of their money that's being wasted while you're getting worse, and ask for a waiver from the doctor referral

As for what they did at work, that's just wrong.  I'm not the type to run and file a lawsuit very easily, but I smell something really bad in the way they handled it.  How do they expect you to return to work and have a decent working relationship with people after that?

My heart goes out to you and I pray that you'll get the answers you need right away-
Tracy