Originally Posted by kiwi33 (Post 1232183)

It sounds like you might have Common Variable Immune Deficiency (CVID). Despite its name, CVID is not common, affecting about 1 in 25000 people. There is some information about it here http://primaryimmune.org/about-prima...ne-deficiency/.

CVID can lead to rheumatoid arthritis (seeing a rheumatologist could help here) and PN has been reported to be associated with it.

Your health care team should be able to advise you about this but IVIG is often effective in its management. IVIG is regular intra-venous infusion of pooled human antibodies

Originally Posted by ElaineD (Post 1232203)

Hi, I have CVID. It is diagnosed through evaluation of four factors:

1. Levels of your (auto=this is wrong, sorry) antibodies (IgA, IgE, IgM and IgG). At least two have to be significantly deficient (well below the normal range).

2. Failure to achieve immunity protection from a high number of type of pneumonia from the Pneumovax vaccine. I had 6 protections out of 23.

3. A history of many and varied illness/very serious illnesses.

and sometimes;

4. A history of other Immune related conditions (eczema, asthma,Sjogren's,

Interstitial Cystitis, etc).

IVIG is a very very costly treatment, and only addresses a deficiency in IgG. It takes between 1000 and 10000 donors to produce enough IgG for ONE treatment. With a treatment every 4 weeks (for the rest of my life) that is 13 treatments a year. The cost of EACH treatment is upwards of $20,000.

Since I began my treatment in 2013, I no longer have illnesses, which is wonderful. But I continue to have progression of my small fiber neuropathy.

Neuropathy has many causes but often for those of us with Immune Disorder it is the result of our Immune System attacking our own organs/systems. Usually with autoantibodies. About 20% of those with CVID ( a form of Primary Immune Deficiency Disorder) have Autoimmune Conditions.

The Immune Deficiency Foundation http://primaryimmune.org is a good source of more information and there is a patient forum: IDF Friends › Log In

There are many causes of neuropathy, genetic, drugs, toxic chemicals, alcohol, nerve damage, diabetes, chemotherapy, and so on. Be sure your medical team is aware of the complexity of your situation.

And I always advise keeping a daily log of your health, moods, things of note. It is surprising how much we can learn from ourselves when we keep track regularly.

Hugs, Elaine D

Originally Posted by en bloc (Post 1232229)

Just want to note that Elaine is correct about several things, but I think made a minor error in the list of initial testing. The levels tested are for 'antibodies', not auto-antibodies...and she is correct, they do include levels of IgA, IgM, IgE, and IgG (all four subclasses).

Sophie, you need to have the skin biopsy done to confirm the SFN (you don't say whether you had it or not...only that the doctor ordered it). I'd like to note that 25% of those with autoimmune disease also have immune deficiency, so this should be considered for you (testing for autoimmune disease).

If you do have SFN and found to also have an immune deficiency, then autoimmune testing should be done. IVIG can not only help the immune deficiency, but higher doses can help neuropathy (SFN) caused by autoimmune disease.

You should definitely keep this neurologist and complete the testing he ordered...but also see a hematologist or immunologist for the immune deficiency and maybe a rheumatologist if they suspect an autoimmune disease process.

Originally Posted by en bloc (Post 1232229)

Just want to note that Elaine is correct about several things, but I think made a minor error in the list of initial testing. The levels tested are for 'antibodies', not auto-antibodies...and she is correct, they do include levels of IgA, IgM, IgE, and IgG (all four subclasses).

Sophie, you need to have the skin biopsy done to confirm the SFN (you don't say whether you had it or not...only that the doctor ordered it). I'd like to note that 25% of those with autoimmune disease also have immune deficiency, so this should be considered for you (testing for autoimmune disease).

If you do have SFN and found to also have an immune deficiency, then autoimmune testing should be done. IVIG can not only help the immune deficiency, but higher doses can help neuropathy (SFN) caused by autoimmune disease.

You should definitely keep this neurologist and complete the testing he ordered...but also see a hematologist or immunologist for the immune deficiency and maybe a rheumatologist if they suspect an autoimmune disease process.

Originally Posted by Sophie0513 (Post 1232544)

I just realized that my bloodwork revealed a normal ANA..So does that rule-out an autoimmune/immune deficiency? Should I still pursue working with an immunologist?

Originally Posted by echoes long ago (Post 1232547)

my ANA goes back and forth between being normal and abnormal. What was your abnormal ANA ratio?

Originally Posted by kiwi33 (Post 1232557)

Sophie, there are two parts to an ANA test.

The first is the titre (the level of anti-nuclear antibodies in the blood). This is measured using an ELISA (an immunoassay) - the titre is expressed as a ratio (1:160, 1:320, etc). The higher the titre the more anti-nuclear antibodies are present in the blood.

The second is the staining pattern - which parts of a nucleus the anti-nuclear antibodies react with.

Many people with no other signs of an auto-immune disease have an unusually high ANA titre. For that reason an ANA test is regarded as confirmatory rather than diagnostic.

This is discussed from a clinical perspective here

http://www.racgp.org.au/afp/2013/oct...antibody-test/.