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

Thanks for all your encouragement, guys.

In terms of antibodies to the adrenal--You know, I had these years and years ago, but not lately. My sinus guy, who says he sees lots of this from steroid use, is confident that it will just gradually improve. I'll give it a bit of timee before gettign mroe exotic tests. (I think I have adult-onset dyslexia!).

The antibodies that were done have to do with coagulation. My neuro ordered soemthing called lupus anticoagulants. The screening test came back positive, but the specific test is negative. I don't quite undestand this one, EVEN after reading on the lab's site, but, it seems if it's negative, then they look for anticardiolipin antibody an antiphospholipid antibody. I think these are all related to "real" illnesses that show themselves younger than I am though, so they'll probably be okay.

My friend said my body could be considered like a passport, getting a new stamp with each new specialty I visit. He says just think of the hematologist as another stamp!

The oddest part of this is that as soon as I saw my cortisol levels, I felt I could relax, go to bed early, and lie around the house as lazy as I want to be.
It validated being tired, and made it feel okay to rest.

My son just got a cold today, and I am terrified. I very narcissitically am totally concerned with the impact of HIS cold on ME. I do not want to get it. If I do, it will be another sinus infection, and those have been so hard to treat in me without a short course of steroids and antibiotics. I just don't want to catch it. Ya think he'll wash his hands? Ya think? Not.

"My son just got a cold today, and I am terrified. I very narcissitically am totally concerned with the impact of HIS cold on ME. I do not want to get it. If I do, it will be another sinus infection, and those have been so hard to treat in me without a short course of steroids and antibiotics. I just don't want to catch it. Ya think he'll wash his hands? Ya think? Not."

Now you know how I feel after years of steroids.... Neighbor calls. Child at school is sick as a dog and running a fever.... Mother cannot get away from the office... Will I pick him up??? Not in a thousand years... I get black grades in my "helpful neighbor" gradebook.... :) :) :)

Cathie

I made the kid run out and buy Purell and Chlorox wipes and sanitize everything he touched!

Liza Jane,
He'll probably never truly understand, but he'll be OK.
He'll just grow up thinking "Mom's weird!".
My 3 older kids did that.
Now they're parents themselves and finally
understand - 'What goes 'round - comes 'round'.
I bet'cha they find themselves thinking
"I'm becoming one of my parents!"

update
 

I managed to get only a mild cold, rather than sinus infection, amazing.

I've had blood tests over the past week, and they show that I have isolated pituitary suppression of ACTH, which means it's just a slow recovery from a few days of steroids in June that's knocked out my pituitary.

Also, the numbers are definitely improving. They're still suppressed, but better, and I do feel more energy returning.

HOWEVER---

I am getting disturbed by small sensations which keep pricking at me. The tips of my fingers, especially in my left hand, have developed a prickling feeling, and when I touch something lightly, just a piece of paper, for instance, the touch can be extraordinarily unpleasant.

Also, I feel like I'm always itchy. But it's not really an itch. I have longish hair, and the tips of the hairs prick my skin as they lie on it My face gets pricked, as I talk, my feet feel pricked. Each little prick leads to wanting to touch it, as if there's a mosquito to slap, or an itch to scratch, though the sensation is gnerally gone by the time I reach it. Not always.

It's really bodywide, including face. Given that my symptoms were always pretty predictable: vibrations, numbness, pain or cold in my feet, would any of you mavens out there think this is an "exacerbation"?

I think I'm wearing my neuro out. He sees me as soo much better than when I fist saw him this winter, with lots of back pain, that he'd be happy for me to just be happy the pain is better. He's a generalist. I'm wondering if it's worth going back to Latov or someone on his team, or whether pursuing more "answers" or "treatments" at this point is besides the point.

Mostly, that's what I'v been thinking. I've been worked up for just about everything in existence. And I really don't want meds.

Oh, one thing: My cholesterol has always been 200 - 250, and of NO concern to any of my doctors, because my HDL is 90 or more. That means that all the excess over 175 can be accounted for by good cholesterol. But last week when my endo checked it in his office, it was 340. He was pretty stunned, and had it repeated. It was 350 on repeat. We spoke today, and he said, given that I have so many other issus just now, he'd not pursue it, just follow it.

Could the high cholesterol bee related to the other things like the pituitary, or just the stress on my system?

I take: alpha lipoic acid, acetyl l carnitine, N- acetyl- cysteine, fish oil, dhea, 5HTP, B12, and an antioxidant combo.

Good news
 

I have a pleasant update! Last I was here, my new neuro had sent me to a new rheumie because he was worried that spots on my brain mri were from a rheumatological illness. While waiting to see him, I went to see my old rheumie, who drew bloods and got results that looked like anti-phospholipid syndrome.
The new guy re-did the blood tests, and requested copies of my brain mri to view himself.

Today he has completed both tasks.

First, he said the brain MRI is not at all like what you see with rheumatological illness or vaculitis. What he sees is much much worse than that, and the spots look different. If you were to rate spots on MRIs he sees in his rheum patients on a scale of 1 - 10, my spots would be a 1. Also, he said, the distribution and appearance of the spots is exactly what you see with migraines, which I have. (The report had read that the spots could be either rheumatologic--vasculitis--OR migraine.)

Second, there's that old rule that you never assume anything from on abnormal blood test, and, in fact, you don't order others based on it until youv'e repeated it and it's abnormal the second time. My blood tests for anti-phospholipid antibodies were all negative this time!

YAAAY!

On the other hand (and now I'm sort of blogging to keep records everywhere), I have a sinus infection. I'd been trying to keep it under control for almost two weeks with just irrigating, but it's not working. I had a batmitzvah to go to today in Vermont, by plane, the last of this generation of kids in my family. Vermont when the leaves are turning! What could have been nicer? But I'm too sick to get on the airplane, and have just been in bed all day. I called my endocrinologist to tell him, and ask him a question: Since we know my pituitary is not working, and that you need its stress hormones to get well, should I be on steroids even though the thing we would want to do most is to keep me off? He said Yes. When you have pituitary suppression, it's hard to get well from simple things, and when you take a steroid then, it's not as a "drug", it's as replacement, like taking thyroid hormone when your thyroid isn to working. It won't making my recovery from the hypopituitarism more difficult.

So he's phoned my pharmacy a prescription for hydrocortisone, which is apparently what is used for this.

My son, who had a bad cold a couple of weeks ago, is kind enough to go out to pick up the prescriptions. I think it's the least he can do, seeing as even with using Purell, he was unable to refrain from contaminating me. I'm going to hold the kid responsible for my illness and milk it for all I can! He does make a mean chicken soup......just thinking.....maybe he can rent me a DVD to watch, too...:winky: He's a good kid, and good to have living at home while he goes to college.

Wow! Scared me there..
 

You are a humding of a mystery writer. You had me all the way to the end with the negative bloodwork. This is such a relief.

But what's with the brain spots? Is this a serious problem?

I'm sorry you missed your trip to the barmitzvah. I know you really wanted to go. Don't miss a step with your son. Chicken soup, a movie to watch, chocolate, chocolate and more chocolate, warm milk for bed and chocolate, chocolate and more chocolate.

Update us on the brain spots when you feel better.
Billye

LJ
 

It's good news about the negative blood test. I too have that pricking sensation all the time.That's a flare for me. Sometimes it feels as if tiny bees are stinging me everywhere all at once. Also I have described myself as a human pin cushion for sewing needles. Hundreds of tiny needles sticking me. It stings a bit and you want to scratch and rub at the same time.

As far as the neuro is concerned, I think you ansered your own question. Maybe you'd like to wait a bit and see how you go? The chicken soup & the DVD sound very nice. You can probably use a nice good old fashioned rest, and a film to occupy your mind for a while so you can stop thinking... and zone out!

Yaaaay. Great news!!! Good to hear about the spots and the second test. I know those are both a big relief to you.

Sorry about the sinuses... So much fun... Somehow I overlooked this post and didn't know about this. Seems like sinus trouble is running rampant at this point...

Would give anything to see Vermont right now, but don't think my ears would appreciate an airplane ride... Besides, the last time we were up there during fall foilage, there were no available hotel rooms...

Cathie

The spots on mri---for those wondering---apparently, when you get migraines, you get spots on a certain film done with an MRI. I'm not sure what it means, but it says "T2". What the rheumie explains is that migraines are the result of spasms in vessels in the brain, and that it's the spasm that causes the pain and the finding. It's not something is coincidental with migraine; it's an inevitable finding on mri. So the only thing about it to worry about, is that you're prone to migraines. Apparently, there's no further significance. Migraines are a real thing.

Sinus update: I saw my NON-surgical sinus guy today, and he's thinking that I'm not necessarily "infected", but that the last surgery has scarred closed, and will need to be reopened. He felt kind of stuck between a rock and a hard place, because the thing that will help, steroids, is bad for my pituitary. He actually spoke with the endo while I was in the office, and they agreed on a strategy--half-dose cortisone for a week.

While I'm not pleased that the sinus saga has no end, it's still way better than worrying about the brain mri and antibody tests.

MRI spots? I have those too, Liza Jane, and so do a number of other implanted women I met in Houston. I think someone mentioned they used to be called UBO's. The first one was done with no contrast media and, at first, it was read as normal. A sharp-eyed Neuro Radiologist took a look and had the MRI repeated with contrast dye, which easily revealed their presence. I do not have migraines.

I would have to pull the reports to give you the exact wording, but vasculitis was a consideration in the first and subsequent MRI's...

I say this not to try and scare you, but since some of us do have vasculitis, I would be cautious in allowing the doctor to dismiss this totally.

Cathie

Update
 

I think I've made clear that I have new neuro symptoms over the past month, culminating over the past two days into total skin involvement, but greatly in the the hands and face. Also, for some reason my LDL jumped 100 points.

I finally reached the nurse of the bone guy. She says this is not from Forteo, but I should stop while she talks with the doctor. Nobody's reported it. And, by the way, neither is she. They NEVER report symptoms to the FDA. This is a doctor who sees hundreds of patients on this medication, which most doctors don't have the comfort to use.

Then I saw my neuro. He said I have an acute small fiber neuropathy, unrelated to my long-standing axonal neuropathy. He's seen 4 or 5 cases in the last few weeks,a nd he thinks there's a neurotrophic virus going around. He's hospitalized at least one of them. He said all but one are getting better without IVIG or plasmaphoresis. He suggests hanging tight and hcekcing in next week. And stopping the Forteo.

He gave me lyrica and Klonopin, for interim comfort. Yes, an unrelated event, he says. My nerves are my achilles heels, he says. but it's not the same illness. Termites and cockroaches, his favorite phrase. That and, Let me think about it over the weekend; you relax and I'll do the worrying."

He put in calls to at least 2 other doctors while I was in the office, to ask if they'd ever seen the lipid changes, for instance, or forteo issues. He's a very hale/hearty kind of guy, and with a big booming voice shouts out to his secretary to get so and so on the line for a question; or get so and so to call me. Very old time, paternalistic, and you know, it's reassuring.

Thanks for posting this, LizaJane. Sorry I missed reading about all of this, but the lung/ear, sinus deal has had me pretty crazy.

I am glad you have a doctor who is kind like this and wants to take care of you. It is never nice to be sick, but it is so much easier to deal with when a doctor acts as you describe.

I hope you get some relief from this quickly... And also find some answers about the LDL's...

Cathie

catching up
 

Liza Jane,
The sensory neuropathy is no fun. And I like Cathie sure hope you get some answers and get better quickly. the Lyrica will take awhile to help. I take 75 mg. at breakfast, 150 at lunch and 150 at bedtime. But I had to build up to that. You can't just start out taking that much.

Hopefully the Klonopin will let you sleep. I'm so sorry this has happened to you.

Billye

Bone guy weighs in
 

I got a call from the bone metabolism specialist. He says he's had hundreds of people on PTH, and never seen a dramatic change in cholesterol like I've had. In fact, he's never seen it. He's also not seen peripheral neuropathy. He says people have complained of bone pain, or throat pain sometimes; and his patients are sick, he said; they get everything. But this is a new one. He suggests stopping the Forteo for two weeks, giving the nerves a chance to heal, and then re-challenging.

He also suggests seeing a cardiologist. My neuro suggests a lipid specialist.

That passport of a body I've got keeps getting new stamps.

Feeling okay with this; it's not fun, but not the end of the world.

PS
 

My magnesium is 4.4. Normal is 1.6 - 2.5 I know someone had raised that as a possibility. But what is it doing at 4.4?

This is the CaMG I take: I take 2 daily. SO my daily dosage is half what is listed.

Country Life, Calcium Magnesium, w/Vitamin D Complex, 240 Veggie Caps

Vitamin D (as ergocalciferol) 400 I.U. 100%
Calcium (as calcium hydroxyapatite, citrate,alpha-ketoglutarate, aspartate, lysinate) 1,000 mg 100%
Phosphorus (as calcium hydroxyapatite) 500 mg 50%
Magnesium (as magnesium oxide, aspartate, alpha-ketoglutarate, citrate, taurinate) 500 mg

http://www.iherb.com/ProductDetails.aspx?c=1&pid=5601

I would stop the supplement for now...
 

Here is a quote from a website:
from http://www.empiremedicare.com/nyorkp...l703_final.htm

My thought was renal insufficiency.

As with your other tests...the antiphosphilipids....which turned out to be temporary. Your Lipids might be the same way.

But with all the different drugs you have been on, and all the doctors you see, there is a huge complex thing going on with you. I'd stop the supplements and see what the new tests show.

It seems like an awful lot of confusing and possibly iatrogenic stuff going on here. I certainly am losing track of it all. And if you start both Lyrica and Klonopin, you may lose track also! So do be careful.

Mrs d
 

Thanks, I do have adrenal insufficiency, because the pituitary which stimulates the adrenals, isn't working.

I've been on Klonopin as needed for neuropathy pain for ages, so that's okay. And I don't think I'll actually take the Lyrica. I do try to do without.

Yes, nobody has any idea why these things happen. I know that the antiphospholipid antibodies turn up with infections and inflammation, so that explains the transient increase.

It was a nothing, thank goodness. Just a scare.

I'm hopeful that this will go away and not progress. My doctor said that 4 of the 5 he's seen in the past few weeks are better. One is kind of limping along, he said.

Thank you so much for your help, Mrs D. You seem to have at your fingers a million websites which are all pertinent, none of which I'd have found on my own.

You are a dear, and have been so helpful.

LizaJane:

I emailed you a note to tell you a friend here has had problems with Forteo, which was prescribed by her Endocrinologist-who has no clue asto what is going on with its. (Imagine that, another drug out on the market and no one has a clue.)

The Rheumatologist discovered bone inflammation, but I don't have detailed information on that and she did not say where. She seems to be doing fine though. I have emailed to see if her neuropathy was affected.

Cathie

"I have emailed to see if her neuropathy was affected."

Her response was that she was on a lot of pain medication when she was on Forteo, so could not say for sure there was an increase in pain...

She is doing a lot better now overall, since they discovered Addison's and are treating for it...

Cathie