Is this the book? (can't find the ISBN match... perhaps new printing or edition?)
http://www.amazon.com/Color-Natural-...ictoria+Finlay

[QUOTE=MAT52;114537

However I believe I need them to alter the disease activity scoring system for me, to include my nerves, blood vessels and jaw so that I can meet the criteria for further immunesuppressant medication. I think I do probably just have a very systemic type of RA which overlaps with other diseases, causing inflammation in the nerves. But it could be that I actually have inflammation in the joints and just because it's seronegative and there no visible presence of hot swollen joints my rheumatologist is now waiting to see if the RA is causing my jaw problems perhaps before offering me further treatment.[/QUOTE]

I can relate to this! I have sensory and autonomic small fiber neuropathy with a positive ANA, and "the antibody profile of a lupus patient" at 10 times the normal upper limit. Yet my rheumatologist won't diagnose me because I don't have the typical skin or joint manifestations of lupus. She says, "you don't want to have lupus," but naming it won't change my condition and I do want a diagnosis!

You were given the stronger immune suppression medications (imuran) due to the RA not the neuropathy--right?? That must be why you were started on that before trying ivig.
Yes, my neuropathy is THOUGHT to be immune related because of an abnormal antibody found. I think too, because nothing else could be found, no family history, negative for: MS, lyme, celiac, diabetes, sjrogens. nothing found in toxicity panel. normal lumbar pucture, normal rhemotoid factors, abnormal sural nerve biopsy and abnormal emg/ncv. Think that was all the big ones.
As for the pain description, I would be sure to tell the doctor in enough description so he/she understands how bad it is. It sounds like pain is your worst symptom and primary concern right now. Be sure they understand how bad it is and get a treatment plan and a RX before you walk out their door. I like to repeat back to them the next plan/step to be sure we are both on the same page. Once we are out that door, they are onto the next person dealing with a whole new set of problems.
I don't have pain, numbness and weakness are my symptoms--weakness being my main concern.
My youngest son just finished his 1st year of college too. I have a daughter who just finished her last/4th year of nursing school and another son who does computer work. Thankfully this neuropathy didn't hit me until they were older. It would be so much more difficult with young children.
I feel bad for the people who are dealing with this and young children.

Yes MrsD - that's it. Must be an American printing edition from the title spelling but the text should be the same. I have a UK edition published 2002.

Thanks, I found it on Ebay for $5.96 and free shipping... I am going to get it. I appreciate your suggestion very much!;)

quote:
Do you ever get this kind of pain where it is as if something is gripping you everywhere? So if you move you might explode like you have a bomb attached? So you stay extremely still in its vice like grip in the hope that it will lift itself and let you breathe again normally?

becomes like a wetsuit of pain in the night and includes my jaw so I feel I can't even cry out[/QUOTE]

I get this. I was just complaining about this symptom again to my husband. I described it similarly. I said it's like I'm wearing a full body suit (head to toe) and it's squeezing be to death. Along with this feeling my body STINGS really bad.

Hi! I have just joined this post and totally understand what you are going through! I have RRMS and Dysautonomia and possibly POTS, also Reactive a Hypoglycaemia and glucose intolerant! Oh and brain damage left side front lobe and osteoarthritis, think I have finished that bit now! Always hard to remember all of it and adding a lot all the time! I understand the pain, I get neuropathic pain in my legs every day around the same time! I haven't got a clue what it's related to, MS or POTS? I take oxycodone/naloxone slow release tablets as I became resistant to tramadol! Ended up referred to pain management by my GP! Best thing he ever did! Pain free except for this damn leg pain in the evenings and the pain causes severe fatigue! I am on Lanzoprazole for my tummy, and that helps loads, just going through a bowel blockage at the moment and got it hurts! And that caused a bladder infection band ended up at urgent care last week! Gosh I am a mess, it's official! On your MRI does it show lesions? Light white dots? That's MS and would cause the symptoms you have or fibromyalgia? All auto immune, if you want to chat feel free! I understand your pain! XxX


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Hi Loupy,

How ya doing? Nice that you have found us, but a shame that you have need to be here in the first place.

With your various issues you will fit in, and be afforded a warm welcome, across many of our Forums.

As with your offer, any time you want to talk about anything I am always about.

Dave.

I am still recovering from my bowel block and kidney infection! Sleep problems and the rest. Just resting at the moment with a doctors appointment next week to sort all this out, see if there are other things I need or could be doing to sort myself out! But happy sitting about on my iPad, chatting on Facebook and stuff xx


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