Hi there,

Thank you for your reply enbloc, I was wondering, if it is inflammation, could steroids actually sort out the problem, I mean if it did work would I take this long term, sorry I am not as clued up on this as others.

If it IS inflammation, yes & no to your question. Yes, it can help on the long term if you kept taking the steroids, but no, it won't 'fix' the underlining problem. It will only reduce the inflammation. Steroids are, in fact, good at reducing the inflammation, but they come at a hefty price with long term/permanent side-effects.

If you try a short course of steroids, you will know in a matter of days to a week if they will work for you. If they do, you might still consider trying the IVIG. Both carry risks, but steroids (in my opinion) are far worse in regards to damage to the body. I have Cushing's syndrome from years of steroid use for my inflammation. The damage I have is now permanent. The side-effects are many with steroids...even lower doses. If you do have success and decide to stay on steroid for a while to see how it goes, play with the dose a bit until you find the LOWEST possible dose that provides the symptom relief you need.

You should still try to find the underlining cause (not always found though).

I have had both of these RXs. A dose pack of steroids does calm my symptoms down. I have been getting IVIG for a few years now. It does help me but for the last several months every time I have the Rx I'm so nauseous for days. I have to Zofran to even tolerate the nausea.
I get the IVIG 2 days in a row once a month.
I would try the dose pack first and see how that goes. They IVIG a is very expensive so it can be difficult to get approved.
Not all doctors investigate whether meds can cause neuropathy. I know mine happened from Avelox. When I told my neuro what I thought he said I don't think so while he was looking up the drug on the Internet to see what that said about it. I was shocked. Many doctors were told on the beginning you had to be on it for a long length of time for this s/e. It doesn't say that anymore. It can be very frustrating sometimes trying to be heard.

I forgot to say if you get the IVIG Abd they give you steroids with the infusions keep an eye on your B/P. Mine got very high with the combination of the two. I made them stop the steroids and it went back to normal

--I think you need that heavy metal testing, and maybe testing for levels of solvents in your serum (if they have the capability to do that; such testing is not widely available) . From what you described earlier, I am suspicious that you and your husband may be experiencing reactions to toxins--and many of these substances are neurotoxic.

Hi Glenn,

Thanks for your reply. As I am in the Uk I haven't really heard of heavy metal testing. Do you think it could be from the paints he has used in the house? I know he has sometimes used paint which has been left over. Hubbie is from Turkey so he seems to think it is Ok to burn anything on our open fire. It sounds a bit mad when I tell people. So do I just ask for heavy mental testings? I am seeing my neuro in August, I will take my husband with me and explain he has had problems too.

Yes, heavy metals.... arsenic, lead, mercury, cadmium, chromium etc.

Also if you have well water to drink, I'd get that tested too. Well water can be contaminated with arsenic. Arsenic is a classic cause of PN.

If you live in a really old home.... even wallpaper had arsenic at one time:
http://www.dailymail.co.uk/health/ar...d-Britain.html

THank you Mrs D, I am going to ask for this testing. Do you think my GP can do this or are these blood tests specialised tests?

I think the tests themselves are common for heavy metals. I am not familiar with solvent one Glenn mentioned.

The test itself does not require fancy equipment like antibody testing does. But it may require a gas chromatography machine.

It is just that GPs may not order the test often, and be familiar with it.

If either or both of you test positive you'll have to get that baby tested too. We had our son tested for lead... and he was negative...that was years ago. We live in an old house (it is 100 yrs old in fact this year!)

Our house is about 80 years old, we moved here about 4 years ago. I have another son who is 7 years old. He has not complained of any symptoms. I just hope my neurologist doesn't laugh at me when I ask for these tests. I will tell him I am worried. Now am thinking I want to move!