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

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

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

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.

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

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.

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