I asked the pain guy about the dose of steroid, since one thing I really care about is NOT suppressing my pituitary again. He said it was small, and a different kind from what used to be used, so it wouldn't be an issue.

But one way or another, I had the epidural in June, and it's August, and the improvement is still there. I am much much better.

I'm also on parathyroid injections daily, but they are not supposed to work for 3 - 6 months.

I for one
 

don't care how you got the improvement. I'm just glad you did get one. It's great to hear you and see you in better comfort. Next thing we know you'll be giving concerts on that grand piano.

Billye

LizaJane

I am so pleased to hear you are feeling much better. I do hope the improvement will continue.

Tony

HI Liza Jane!
I get the leg cramps too. My Magnesium level is ok (so says my dr.) but I'm wondering if I should take extra if that helps with the cramps??
The cramps don't happen as often since we got the Tempurpedic king split adjustable bed. I have my legs raised now as well as my upper body. The adjustable bed sure has helped with my Barrett's Esophagus pain! I used to sleep up on a wedge but I always woke with terrible acid pain.
Anyway......I sure enjoy seeing everyone involved in writing on this site! There's SO much info here, it's amazing!

Man it's STILL so hot here in Texas! We had 10 min of heavy rain this afternoon......right out of the blue and then the sun came back out and it was like a sauna the rest of the day! UGH!!!!! It's 7pm and it's still 95 degrees out! Stay cool y'all! Hope you are staying inside Billye!

Hi all, Yes, I really am feeling incredibly better, so much so that I feel I can address and think about the neuropathy again. It's been almost 3 years that the back has been such a pain that the feel and hands paled in comparison.

I told my neuro (who's been on my case only since the back, since I fired my last neuro for not picking up the cyst) that I was hearing that sensory neuropathy can be CIDP, and he said yes, and that perhaps I should have a spinal tap. He thought it could be done when I'd have amyelogram for the back pain, but since the back pain is so minor just now, I'm surely not having a mylogram, so wonder what he will say.

I asked him if I could have an MRI of the brain, because I was concerned about problems with word finding an memory, and he said yes. This is another thing I would have paid any attention to two months ago.

But it would be nice to be reassured that nothing else is going on, or know that there is an intervention if there's a flare. I can't help but notice how many people have ended up getting IVIG and benefitting. I'm thinking we need to get our doctors to look for CIDP more aggessively, rather than justa cceept the diagnosis of "idiopathic" or "cryptogenic".

Is there a spell check here? Because I really don't want to re-read and correct all my typos?

Lots of overlap with possible other issues here?
 

I'm gonna ask 'cause I've had them happen to me...related or not..key testing wasn't done at key times to 'tie it all up with a bow'.
Hate to ask, but have you had any basic cancer blood panels done? I ask, not to scare, but to get it eliminated. My blood panels weren't done for such from the get go...but when done after finding a 'lump' -the work up showed a definitely THERE result. Since such insidiousness can lie low for 5-7 years [one learns soo much after the fact?] it can wreak havoc until tested.. Possibly a PET scan could totally eliminate the possibility there and give you peace...while some insurances consider PETS still 'experimental' [dinosaurs!] the companies that do them offer financial support if needed.
The other question relates to Thyroid...[yeah, I am getting on a soapbox here as well?] only because of the thyroids role, and the parathyroid [as in Cathie's case] in the Bone health processes. All along I kept asking ...Could my hypothyroid be an issue...answer NOPE! Guess what...It could be now that I'm diagnosed with Hashis'...Again since key tests werent done at key times....hard to connect the dots. For me, it was the Auto-immune thyroid test. My #'s were disturbingly high [to me] but I've read of others with #'s dramatically high. When the basic TSH, T-3, & T-4 #'s were totally standard [probably because of 'proper meds']. Well, just some things to reconsider, as I am sure you have. I surely don't want to see YOU, good person, learn the harder way...after the fact. Golly, you are getting me thinking - HUMM I'd really like to try and pick up a 2x4 and start swinging? Denting something would feel soo empowering about now! - Good thoughts [none damaging to you!] !!!! = j

Lisa Jane,
I hadn't noticed before that we both have the axonal Neuropathy. I'm getting the IVIG and it is helping me. I just had my 5th one and I've been able to go a little longer without the pain meds! Since you've had SO many tests already maybe your insurance would see fit to let you try it. My dr. gave a good arguement for me to get to try it. It's all SO frustrating!!!!

Liza Jane, here's one more possibility with the leg cramps. (Which is probably one more than you wanted.) If you had an epidural with pain relief as the result, you might have been more active and used your muscles more than usual. This could cause cramps.

Dahlek: W/u for cancer? Well, I get my mammograms, get my pap tests, had a colonoscopy, and all was well. I get a lot of bloodwork almost monthly, with my sinus guy following my liver tests because I take an anti-fungal with possible liver toxicity, and my endo does my thyroids and cortisol every 3 months, unless he chagnes the dose, and then it's ever 2 months. So I think I'm covered there.

I think I'm mainly autoimmune, but I have never had really abnormal numbers.

I am pretty sure I was hyper thyroid for many years; I see this looking back, and then became mildly hypothyroid, with a low T3 and a normal T4. I'm treated with both T3 and T4, but because my TSH is low, my bone doctor (can you believe how many specialists I've got now?) wants my endo to see if he can lower my meds at all, without making me too symptomatic, as bone grows better with a higher TSH, which is suppressed by the thyroid meds.

Keeping everyone up to date: I had silicone breast implants put in after I finished nursing my 2nd kid, because the plastic surgeon they no longer did repairs or lifts on women with saggy saggy breasts from nursing; they popped in implants.

For the next 10 years I had a lot of joint pains, as well as swolln nerves. My ulner nerve became enlarged at my elbow; then that went away and another nerve had a problem. I had a lot of headaches. I had neck pain.

In 1996 I noticed my toes felt stubby. I was told I had foot issues and needed orthotics. In 1997 my neck pain turned out to be a disk pressing the cord and my left side got weak and I had the disk removed. I had lots of sinus infections, and sometime between 1997 and 2000 I had sinus surgery and a coupl of months of IV antibiotics for a sinus infection with an organism that wouldn't respond to anything I could take orally. In 1999 I got mouth and tongue ulcers, an autoimmune skin rash, and then a major neueroloigcal illness. Everything vibrated, I felt insects crawling on me, I had major balance problems, major numbness and got the peripheral neuropathy w/u.

I was told I had an autoimmune illness from the silicone. I had the implants removed. I was put on prednisone and arava and plaquinel, none of which helped (except plaquinel, made my morning stiffness go away). I had a major pn workup in new York, and then went out to Mayo where they said the same thing: idiopathic sensori-motor pn with autonomic involvement.

I found this board. I pulled back on work, went on disabilyt (I had a private policy that let me work part time), did yoga and took supplements. I improved really significantly.

Then, in 2006 I got sciatic, and was diagnosed with a synovial cyst L4,5 and spinal stenosis, and had the laminectomy and fusion in feb 06.

Several months later I had a sinus flare, and instead of going to my regular guy (an allergist who specialises in non-surgical sinus treatment, having had sinus disease himself) I went to my ENT surgeon, who'd done my second sinus surgery. He put me on dexamethoson nasal spray, and the rest is history.

I've had no healing of my spinal fusion, and am now taking parathyroid injections daily, and decreasing my thyroid meds to increase my TSH, and working on bone healing. I wear a bone growth stimulator.

I work pretty much full time, excpet for forays to doctors and bodyworkers (feldenkrais mostly).

I deal with a GI tract that is finicky, to say the least, and have been pretty faithfully gluten-free since June (not absolutely totally, because I eat ketchup and some foods that are said to have gluten), but I don't think it's helped much.

And I still have allergic fungal sinusitis, and take antifungals, steroid nasal spray, and amphotericin nasal spray.

But I've never had a spinal tap, and while I don't really want to do anything else dramatic for a long time, it might be good to see what the protein is.

Roxie: what made them decide to give you IVIG? Was there a particular test that was abnormal? Did other things that were bothering you get better?

Dahlek: don't you think if I have cancer they'd have found it?

HI Liza Jane!
I had the nerve/muscle biopsy that showed that I have Chronic Axonal Neuropathy and my pain is getting worse and worse, so my dr. said the next step is trying the IVIG. I get 800mg of Octagam and it seems to be helping some. I'm just SO thankful that my insurance is covering the whole bill! I'd never be able to afford $9,000 a week!

OK why I suggest all these other tests is..
 

BECAUSE they mite, just mite, be all related. As for related to which/what? A big empty space is there as hindsight is a wonderful but useless tool.
In my case: Hypothyroid at menopause early on...ten years later on the osteo 'watch' with Fozamax-oids+ calcium and good diet [eating was never a problem]...ten years on disgustingly healthy [w/occasional hi cholesterol, but very very active-HEY! I craved red meat and carbs...I balance it but I'm not a wimp here]; occasional colds [always susceptable here and occasional UTI and fractures from falling off or around horses] . Almost 5 years ago get one doozy of a pneumonia, two months of anti-b's before an all clear, 2 months after that, starting numbness, one month after that HOSPITAL and 'neuropathy' diagnosis. Two docs, heaps of your recommended tests and a year after hospital-got a CIDP diagnosis. IVIG got me moving again, neurontin and I did not get along[the hallucinations were just part of that nitemare?] switching to other meds and PT got me moving almost normally. BUT last year early the 'lump' was found. This year early Hypto-t was changed to Hashi's... BASIC auto-I tests had been run...but...I have a clear history of varied family cancers and some thyroid issues in siblings and their kids. Now, IF any cancer tests had been run during my auto-i testing for blood and spinal and same for thyroid, at the time my CIDP had been determined..well, maybe, just maybe, some issues and personal deterioration could have been reduced. Just as, when my first neuro determined the 'ideopathic' PN...and had not persued testing further I might have gotten either prednisone short-term or IVIG at onset and be in total remission? I was the one to persue further testing. I sometimes feel, that as we begin, all of us, as a population, show more and more multiple things going wrong and that we are being treated in PARTS that the integration/interdisciplinary approach of us as WHOLE beings is/has gotten lost. It is going to be needed soon and we are proof of that.
Tho I cannot expect any specialist to KNOW the whole of other fields..I would like and have occasionally found professionals who are at least aware of these 'outside' issues and their impact on their specialties.
Thing is, for you and for me, each extra added 'problem' might be part of one basic problem.
In my case, the cancer as it could have started the whole immune-cascade reaction while dormant [I believe a 5-7 years before diagnosing the cancer?]
As the 'complications' or conditions start adding up... I'm well, learning more about blood tests for 'these other issues' than I really ever expected in my lifetime to know of! So, I ask you, the thyroid Plus kind of basic testing for antibodies and a similar cancer one at this point certainly couldn't hurt - as you are one to say [and, also one of my favorite docs]-just to get it off the list!
But what percentage of the populations have the combos we have? Probably not known, as it's all fractionalized. Scary thoughts tho.
As for all your issues, honestly it's good you put it out there, I've got to think on all that too. Wish me a stupidly lucky Ah-Ha! Moment for YOU? I sure hope so, good person!
My pneumonia came on after the almost total wettest year here ever [and my house has mold, tho not deemed deadly it's THERE]. Connections? Possible, provable? Likely not.
Gee, logic and sensibilities say one set of things...proof always is the perverse part, isn't it?
Pain free moments - truly! - j

dahlek--are you referring to antibodies like anti-Hu, Ro, etc? I had those in the early days of diagnosis. Also, I just had my colonoscopy, and always have my yearly mammo and PAP.

If there's something i was missing, please let me knw.