Neuro Visit

[navydad]

Just got back from a appt with the neuro,, I like her a lot and she seems to be taking my case very seriously,, she had the results of my spinal tap and they have ruled out anything that might be serious,, MS,, infection, and a bunch of other stuff,, onl thing that is puzzling her is the low potassium and high chloride in the spinal fluid,, and the leg tingling and numbness has her a bit baffled also,, she as ordered a parenteoplastic panel done,, (looks for cancers that havent reared tehre head yet),I guess they look for certain antibodies,, and a small nerve biopsy thats shes doing nexxt week, other then that she is at a loss,, my other blood work is comig in as pretty normal,, but she sais,, you just look sick and when she weighed me,, I had lost another 6 lbs in amonth,, my stomach has been pretty mesed up lately,, inability to pass stool, low abdominal pain,, and the thick mucos from heck,, I see teh ent next week,, and hes getting a bottle full of the stuff I hack up during the night,, something the neuro intrigued me,, she had mentioned Lymes,, now Lymes had been on my mind for a whi,, and she remarked tat they tested me for it,, but she said,, even though you show no antibodies to it,, your borderliine,, so shes looking to retst me more on that front,, she said some of the symptos fit,, and even though I have tested negative in the past,, she said with teh increasing symtoms,, it should be looked at more closely,, she also talked about the problems between the rheummy,, one saying I have it, one saying I dont,, neg ANA,, neg SSA SSB,, so go figure,, noticed today,, just going after the phone left me breathless,, my son asked,, where were you? outside ?and running int o get the phone,, no mike,, I was 10 feet from it,, and completely out of breath,,

[ohiolady]

Navydad,

I'm glad you liked your neuro and feel she is going to keep at it until she figures things out for you.  I saw a program once that featured a lady that had lymes disease.  It took forever and many doctors until they finally diagnosed her.  The good thing is once diagnosed she returned to good health.  It is so frustrating when you are so sick and your testing doesn't reveal what is going on.  Hang in there and know that others will be thinking of you.

Anna

[Scottietottie]

Hi Navydad 

I am so glad that you've finally found a doc that you like and who seems to be taking you seriously. Goodness only knows - you've had a bad run so far.
Lymes can do a real number on you so looking into it again would be worthwhile.

I really hope that this neuro can get things moving for you. I sense that you really think she might - which is good. Hope is good. That post is the most positive you've posted. I really hope things start getting better for you.

Take care - Scottie 

[irish]

Navydad, I am so glad that you finally found a doc who is taking your seriously. About time. Lyme disease is sure a possibility. I have heard that there is really only one test that is the most accurate and I don't know what more docs don't do that one. Wish I could remember where it is done. Seems like it is done in a Western state.

Better make sure to have your lungs checked. Might be something that you will need to be treated for. Have they checked you for myasthenia gravis??? Also, have they checked you for the Renal Tubular Acidosis??? This is done by a blood test. I think it is called an Ammonium chloride loading blood test or something like that. Low potassium is affected in the blood with the RTA and I just wondered if it could also affect the spinal fluid.

There are so many diseases that they have not identified yet. Good luck. Irish

[kim31072]

Navydad I have been following your saga and search for answers for the long haul..every post I say a quick prayer before opening that this one is the one that says THEY FOUND SOMETHING AND ARE GOING TO START TRYING TO MAKE ME BETTER!I will keep rooting for you!I found some Lyme links for you if you feel up to going through them..I hope they help give you some ideas and familiarize you with the testing in case you have to help guide the drs  ...like we all seem to end up doing at some point in our care.

I hope you are doing as well as you can and please take care.

Kim

http://www.canlyme.com/labtests.html

http://arthritis.webmd.com/lyme-disease-test

http://health.yahoo.com/infectiousdisease-diagnosis/lyme-disease-test/healthwise--hw5113.html

http://www.truthaboutlymedisease.com/

[lynnmarie219]

Hi Navydad,


So good to hear that you have found a doctor that you feel is really listening to you and looking to actually getting to the bottom of this! I hope she is able to come to some conclusion for you in the very near future...you have been through enough and deserve some treatment to make you feel better!

Keep us posted on how the appts go...I wish you nothing but good luck and some resolution as to what you have been through physically...your body needs a break! 

[Dolly Dimples]

   I just love it when I hear  that  someone has found a good Doctor, Navy Dad.
       
I believe that a good Doctor does take a very keen interest in his or her job, and the patient certainly benefits from it..
        I pray that she will find answers to all that you have on your plate right now...too much eh?
         Good luck my friend and know that we are with you all the way.... Best of Luck, Dolly

[allium]

Navydad, I think you just have to keep chipping away at the layers of mud to get down to the solid rock.  There has to be a diamond (or at least a Herkemir quartz) somewhere in the muck and mire.

I know you have had lots of steroids and Dmards that have not helped., but have they looked at sarcoidosis as something to rule out?  I have found that this is another condition with similar Sjs symptoms, but few seem to know about it or test for it.

A course of treatment for Lyme hopefully will start to help... a least a good, interested doctor to be on your side is a giant step.

Still hoping for you.
Sheila