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I'm Lost...


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I don't know what to do and feel really lost...depressed and it's affecting every part of my life including my marriage.

I finally got in to see a new EP at a large university near me because I've been having arrhythmia problems and my ICD keeps making my monitor go off. After 45 min of extensive testing; he says I do have lead failure most likely leaking of the fluid from the insulation corroding or a fracuture. I didn't think of it until I got home and talking to my husband but my cardiologist I had in May 2010 told me if it was the leads I would have acute pain in the middle upper abdomen, which started in Sept 2010 but my primary and GI thought it was my gallbladder and my mind is just the pits these days with memory so I didn't even remember that until now.

The EP thinks my polymorphic VT and arrhythmia are not due to cardiac problems but said he felt like it was due to my nervous system and failure; which has progressively gotten worse over the past 2 years....I really question if this wouldn't have happened had a doctor sent me for testing back in 2004 when I noticed a huge increase in my syncope. Basically he said what all others doctors have said - I have an ICD (which may or may not work) and have been treated medically all they can there isn't much else they can do except wait and see if i get better or something else is found to treat ANS issues.

I've had tons of tests done in 2011; found out my degeneration in my spine and OA is not the cause of my numbness & muscle spasms in my arms/hand since I have no damage in my cervical spine. I have bone spurs on top of the DDD & OA front and back sides of the spine and I am herniating discs right and left...3 lumbar and last week herniated 1 in my thoracic spine and spent a full month in bed.

Some days I don't have any feeling in a certain limb then it will go away and it goes somewhere else; making it difficult for my dr's to figure out what's causing all this. My dr says my gait is more disturbed and I'm fearful that I'm going to lose all ability to walk sooner than we had thought. Sometimes it will be so quick I have no warning and fall or trip hurting myself falling into things. A few months ago my hand str went from 4/5 down to 3/5 last month and I've noticed a big decrease in being able to use my hands like cooking opening bottles stuff like that.

The dr tried me on Dexilant for the nonstop nausea I've had since surgery in Aug 2009; it worked wonders then my insurance (First health network) denied coverage so they had to switch me to Pantoprolazole which works, but not as well as dexilant but it's $180 monthly with insurance paying.

The only good thing is my pain doctor put me on Hydrocodone and I can actually sleep when I take it before bed; but it doesn't last long and after 4 hours I'm awake but I can't complain because that's better than waking 50-70 times in those 4 hours.

the real clincher to it all is I'm still fighting disability and trying to find an attorney who will take my case...I do have my primary on my side but my cardiologist said no way would he touch the SSA paper work because he doesn't know enough about dysautonomia to be honest about what I can't or can do.

here's yet another doctor telling me there is nothing more medically they can do; I have such a complicated case - I'm frustrated I've spent thousands of dollars out of pocket this year testing and jumping through hoops trying to get my insurance to approve Mayo or Vanderbilt even though my current EP and cardio both agree I NEED to go for further testing. I can't get new insurance; I'm on the only plan that will take me with all my prior medical problems and SSA says I'm not disabled because I can go to work daily and work an 8 hour day yet my primary says no way so it's a struggle to even pay for healthcare.

sorry to sound so down

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thank you everyone, I'm just so lost battling this thing alone when doctors don't understand - at least my primary tries and helps me any way I can, my cardiologists and now this EP just push me off to vanderbilt not even offereing to help treat me; not sure what they expect patients to do or how to cope :(

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I can only imagine how frustrated you feel. I think it is normal to feel down after all that you have been through and you still don't have the answers to the questions that you have. If there is anyway possible, I would try to go to one of the specialy centers, like Mayo or Vanderbilt, and seek treatment there. At least at those medical centers, the physicians are some of the top experts in the field of dysautonomia and you can finally get the answers and treatment that you deserve.

Good Luck in you quest! Don't give up! There are some competent doctors who can help you!

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I feel like I'm playing musical doctors...my ep's office called to tell me I should go back to my original ep for problems with my ICD and he didn't feel he needed to treat me again.

I keep hanging on to hopes that I'll find someone who understands my quirky system; made an appt with another cardiologist with 10 dr's in it...maybe one of them will know about ANS issues

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