Update
 

I'm not sure where I left off, so a quick re-cap. Length dependent idiopathic axonal neuropathy AND a lousy spine, s/p laminectomy and fusion a year and half ago already, and the spine has not fused.

So, in the spring, I went to Mayo, and asked if my loose screws were dangerous, and they said no. Just painful. They said that when I can't take the pain, I need a re-do, but I'm not going to heal. I could try a bone growth stimulator, but give it 3 months or so; if there's no change, don't bother.

I did that. I also saw a NEW spine surgeon in May or June, who said he'd want to operate, if I'm "ready", (It's a miserable procedure; anterior/posterior fusion), but first, he'd like me to see a bone metabolism specialist.

That I did on behalf of our dear Billye, who really needed a bone metabolism specialist but wasn't referred to one. I was referred for both of us. :)

The bone guy said that steroids I was given post operatively, which had suppressed my pituitary, were responsible for my failure to fuse, and said my bone was not turning over normally.

He said if I was reoperated on, it would fail. But...he offered me Forteo, a daily injection of parathyroid hormone, used for people with metabolic bone disease (bone loss from steroids, really bad osteoporosis). With the daily injections plus calcium plus vit d, he figured in about 6 months I'd be in shape to fuse.

End of June I got an epidural, which was grand! I also had a sinus infection and was given a medrol pak, 5 days.

I then went on to have the draggiest near pain-less (everything is relative) summer you could imagine. I mean, I wasn't hurting nearly as much as I had, but I was not able to get the energy to really enjoy anything. Blah. But not depressed.

I've been feeling worse over time, and I've had scarey things. My legs have turned to rubber, suddenly. My left leg has just gone floppy. My foot gone floppy. I get dizzy whenever I go up stairs, and half the time I get out of a chair. I just feel sick.

My neuro did a brain mri, with spots (talked about it in someone else's thrread) and wanted me to get more rheum tests. On the way to the rheum, my old one not his, I carried my last hormone tests, and saw that in JULY I had practically no serum cortisol. I was carrying the lab results, as I tell everyone to do, and there it was---normal thyroids, but cortisol 1.7 with the range of normal 5 - 22. So, they were repeated.

My cortisol, adrenals are low, and my pituitary is low. They're better than in July, though I don't feel better at all. The doctor's game plan, so far (my sinus guy) is to wait it out. He thinks my pituitary has just lost its flex, and can no longer respond to stress well. It will return, but it will take mnths.

I have a friend who has done well with a chinese herbalist for her thyroid, so, with nothing else to do, I've put a call in for acupuncture and herbs to support my pituiatary?

My neuro wants more spine tests to see more things clearly. He thinks I may have pressure on nerves to the legs.

And, well, that's about it. The neuropathy seems worse, but since I really just feel kind of miserable, it's hard to tell.

The good news is I do think all the doctors are good. Saw my cardiologist, who said to not worry about the BP drops, and, while my cholesterol is high, it's mostly the HDL, so don't worry.

My rheum wants me to see a heme. My neuro wants to think.

No one wants to operate on me or give me drugs, and I'm with them on that.

the update.

Wow. You are a pretty interesting specimen! And I mean that in the nicest way. Here's hoping that things improve and you become less interesting as time goes on. Thank you for the interesting update.

Hi Liza, that bone doctor sounds pretty cluey and give's a lot of hope for a sucessfull union when your ready again.
I have seen through a family member how much the body relies on the Pituirity gland to make the proper amount of chemicals our bodies need.
I was told by my ortho surgeon that they don't like to give anymore than 3 cortasteriod injections to the hip as it can weaken the bone.
It does sound very promissing for you in the near future though.
good luck
Brian :)

You know, you have been following
 

your instincts after all? Finding the right docs who seem to have philosophies that are complimentary to each other is just the way to go!

Sounds like you are on a cautious yet appropriate track...Of course, you, like most of us, wanted ANSWERS, well, not just yesterday...but last YEAR?!!!
We learn it just doesn't happen that way.

However, just by way of encouragement? When I chose my oncologist...I happened to get not a stellar but very solidly trained, interned, and fellowed one who was dual Oconologist AND hematoligist...somehow seemed appropriate for the autoimmune issues and conflicts that cancers and neuro issues have. It was she who was quick on the action plan to get me to an endocrinologist. Ultimately to find Hashi's when I'd had a long standing hypo-thyroid before...Well, things are swimming around in my blood tests now mostly far better than before...and, at least? I don't have to add a Rheumatologist to my very long list of docs? WHEW!

Those nerves are very finicky things, we learn after the fact!? That the spine, the endocrine systems, the autonomic systems and immune systems[which are tied and dependent on all the prior systems], well it all humbles me at times that really good docs try to help us! I hate the lazy docs who don't even try to see the connections.

Liza Jane, yes, you missed some stuff on your last blood tests, well, who doesn't? The docs? US? the Labs? We are in pain and either 'whelmed' or overwhelmed' by this all. Can look the reports over until blue in the face and cross-eyed but still can't see either the forest or the trees. Just keep it up, one day it just jumps out at you [a part at least] and some other puzzle pieces fall into place.

At least, things are heading in one POSITIVE direction. That's a better option than lots of others! :hug:'s - j

Wow,

I find it completely fascinating that with all the stuff going on in your body (they should do an Oprah show on you and feature Dr. Oz and he could answer every single question that you gave him), that you can still come on this forum and share your kindness and interest in helping other people out.

I hope you know how appreciated you are.

Take care,

Melody

LizaJane:

Has anyone checked to see if you developed autoantibodies to your adrenals? A previously implanted friend here, also with a very unusual health history, recently developed these... I think she had to ask before they would test for them...

Lab panels, that were run on us early on, revealed some rather unusual antibodies in tests that are not the norm to run, using specialized testing techniques... Immunosciences in California, FYI...

Cathie

I was thinking along the same lines as Yorkiemom.
 

Knowing you and your history of "hazy" autoimmune issues, I too was wondering about gland-specific antibodies, and not only those associated with Sjogren's; one can get "weird" antibodies to the adrenals, the thyroid, possibly even the pituitary (there aren't a lot of articles on this last possibility, but it does occur), that most non-specialists won't catch.

(Sounds like you might need a good endocrinology consult at a tertiary center who'd be familiar with these interactions.)

Agree about Immunosciences; other lab I thought of was Specialty Labs in Van Nuys (they are the ones who understood why I wanted, with my nose congestion and Epstein Barr Virus profiles, to get an IgA EBV antibody profile to check for markers of nasopharyngeal carcinoma, and they were able to do it--fortunately negative).

Good sites!
 

Lab tests explained!

http://www.specialtylabs.com/default.htm

http://www.immuno-sci-lab.com/index2.html

Information about specialty blood tests in clear presentation - j

Thanks! Folks! - j

No time right now to run through these sites, but I have had testing done by Immunosciences some years back. Dr. Vojdani was very good about talking to people on the phone at that time, although I don't know if he still does that.]

At the time of my testing in the early 90's, he used the Elisa technique in looking for autoantibodies. Whether he uses this now or not, I don't know.

The other thing I recall is, if you are going to have testing done, it is less expensive if you have a panel run, rather than a battery of single tests (that is if you need several tests). If you are interested, I would suggest calling.

Cathie

P.S. He used to have a special Silicone panel that included a number of tests and autoantibodies. I don't know if the adrenals were on that panel or not...

I'm glad you found some docs to help you. I would be interested to hear how the acupucture goes. I was thinking of it but now not sure. My step sister though not for this issue swears by it though. Take care