Gamma globulin and further test results
 

A while back I started a thread(maybe should have put this information in that thread) with questions regarding my gamma globulin score which came back 0.6L. The bloodwork was ordered by my neurologist. I know that Enbloc and Kiwi 33 suggested getting possible further testing.
I saw my neurologist only for the second time last week to get a skin punch biopsy. I mentioned this to him and he said it could be discussed on Jan 26 when I see him/I got the impression he hadn't looked at the results yet (skin biopsy, Athena bloodwork and the other bloodwork will be discussed).
I didn't want to delay this so I saw an immunologist who did further testing. I saw my results online and her office called me yesterday to schedule a f/u appointment.
She tested my immunoglobulins. Immunoglobulin A=108 (range 81-463) however my immunoglobulin G = 617L (range 694-1618) immunoglobulin M = 11L (range 48-271).
My SFN is really effecting just about every inch of my body (the worst is in my feet and handsH however it can vary from day to day. I'm not sure, but something seems to be going wrong with my immune system? I have been relatively healthy for the past 4+decades and I am wondering WTH is happening.

I just wondered if anybody had any input into this newest bloodwork. I think Enbloc had suggested my next step would be a rheumatologist. SHould I wait to see the neurologist or should I just go ahead and make an appointment with one.
ANd I guess I am also looking for guidance...when all the test results are in, who is really the doctor I should use for ongoing care? I know the neurologist is recommending a10 day ketamine infusion however now I am not sure if that is the right direction. ALso, I have been supplementing with alpha lipoid acid and some other supplements.. would they still be helpful if my immune system is the possible cause of the SFN??
Lastly, I really have been having a hard time with depression with some days not even looking forward to getting up to wondering what is the point of it all? I don't know but I just don't feel hopeful about all of this.
Anyway sorry for the long post plus the added stuff about my mood...I'm just super worried about losing my job, my medical benefits and income..I have to be back by the end of February and I don't have much of a choice right financially..but to go back and tough it out

Hi Sophie. I can't really speak to your test results because I'm pretty new to this world of autoimmunity myself, but I also have autoimmune mediated SFN. I have rheumatoid arthritis (seropositive) and a positive ANA - which is the only reason I know with any certainty that my immune system is attacking me and therefore I have a somewhat clear reason for my neuropathy. I am going through all of the same questions you are, trying to figure out the right care to seek, the right treatment route, the best way to handle all of this.

I wanted to reply to you because I understand 100% your depression and I am experiencing it myself. I'm 31 years old and most of the time I feel like my life is over. It's very, very hard and it's difficult to find anybody in my "real life" that truly understands. I sit here often and wonder about my future and where I'll end up and I feel really sad about it. It's a devastating thing to feel so out of control over your own life and body. I honestly just sit here sometimes and cry. Other times I sit here and try to somehow convince myself that this is real and actually happening to me because it feels like a bad dream or something. It's a very hard thing to go through and I hate that ANYBODY goes through it, but I just wanted you to know that you're not alone.

I want to tell you to hang in there and never stop trying. All you can do is be proactive and ask questions and research and learn the most you can about your condition. Autoimmunity is such a complex situation and I have started figuring out that it's a big mystery in medicine. There are, of course, different approaches to autoimmunity: the western medicine route and the functional medicine route. I say try both approaches. Have you done any long-term elimination diets or followed any "autoimmune fixes" by attempting to repair the gut? There are several different books on the subject. Have you tried eliminating gluten? I know celiac can manifest in a neurological way where you don't necessarily have blood markers. I'm at a point of trying everything.

I'm sure more knowledgable people will chime in about your immunoglobulin tests. I just wanted to reach out so that you know you're not alone in what you're going through. I try to keep a shred of hope alive even though it can be challenging to do so. Hang in there.

Thank MsKari85
 

MsKari85. Thanks. I cried when I read your reply. I am so sorry that you are going through all of this too and your 31yo!! I'm 47 and I have absolutely nobody in my life that has experienced anything like this...it's hard to explain that every step I take is excruciating. I used to walk my dogs for miles and just get lost in the moments with them. I just got back from walking my newly adopted dog and I just looked around and couldn't believe just how much I was hating my day. I hope this ends for everyone suffering with this crap. Thanks for the advice on diet..I have eliminated mostly sugar at this point and juicing more. I think you are the one who had mentioned a group on Facebook that consists of ppl with various neuropathies. I did join that group for support. I hate that I cry too.and I do the same thing thinking its a nightmare but it's real unfortunately...it just sucks! Before all of this, everything was good. Thank you again for reaching out and I hope you get better soon...I believe I have read some of your Facebook posts about nutrition and I have been impressed with your knowledge. Hopefully with your diet and supplements your health will start to improve. I have read about IVIG and wonder if you are a candidate for that treatment. I have also read here and on Facebook about success stories and that always gives me some glimmer of hope. Please take care and I will put you in my prayers!

Sophie, your IgA level is within the normal range but your IgG level is on the low side and your IgM level is very low.

There are many possible explanations for this, including auto-immune diseases (RA and SLE among others) - a rheumatologist should be able to help with this.

I think that it would also be a good idea if you saw a clinical immunologist. Sometimes it can be useful to measure the levels of each of the four subclasses of IgG (IgG1, IgG2, IgG3 and IgG4) - a clinical immunologist should be able to arrange this and maybe other investigations.

The clinical immunologist should be able to discuss these findings both with you and the rheumatologist.

thank you Kiwi 33
 

I didn't know there was a difference between a clinical immunologist and an immunologist...I just checked my health insurance plan and I don't see clinical..so when I see the immunologist I will see what she recommends and than talk to her about further testing etc...So I guess I should find a rheumatologist next...
Thank you again Kiwi..hope 2017 is off to a good start for you..thanks for reaching out and sharing your knowledge!!!

I see a clinical immunologist. She teaches, does research in immunology and see patients, preferably those with the conditions related to her research. She is connected with Duke University Medical Center.

If you are having any autoimmune/immune related events, you are experiencing inflammation. Inflammation causes: profound fatigue, pain and depression.

If you have SFN you are living in a cage of pain in your own skin.

There are medications for pain, for depression (Cymbalta is on label for both), unfortunately nothing really good for fatigue, unless you are put on one of the drugs to suppress your immune system (Plaquenil, methotrexate, one of the newer biologicals).

I have an Immune Deficiency which is treated with IVIG every four weeks.
Before I started infusions of IgG , My IgG was 328 (scale:588-1573) my IgA was 106 (46-287) IgM 18 (57-237). My IgG subclasses were all very low.

My IgA is normal, so I don't have problems with my gut most of the time.

It can be very difficult living with Immune/Autoimmune Disorders. I spent years and years in misery, as one system after another was attacked. I sought out the best possible doctors and we even relocated to this area because there are two medical centers within 20 miles of our house.

I am currently experiencing seizures, probably as a result of my Immune System attacking my nerves. So I will be seeing an epileptologist on January 30.

The key to surviving these experiences is finding others to share with, knowing that it's not your fault and you aren't crazy, finding a good medical team to support you, advocating for yourself strongly, and finding the medical and non medical treatments to alleviate your pain and suffering at the very least.

Keep us posted on your progress Sophie.

Hugs, Elaine D

As others have commented, your IgG and IgM are low. I'm not sure why the immunologist that ran the tests hasn't followed up with you about the next step...whether he thinks further testing for CVID is warranted (subclasses, and vaccine tests) or if he thinks you should see a rheumatologist at this point to get his/her input about autoimmune disease (at least 25% of those with AI disease are also immune deficient).

Someone needs to step up tot he plate for you and provide some direction. I wold contact the immunologist and get his opinion and if you have current autoimmune type symptoms, then see a rheumatologist (can't hurt).

Do you know the results of your skin biopsy?

Sophie, adding to what en bloc wrote:

CVID is an acronym for Common Variable Immune Deficiency. It is a somewhat confusing label; it is not common, affecting about 1 person in 25000.

The usual presenting features of CVID are recurrent infections involving the ears, nasal sinuses, bronchi and lungs.

This is something that it might be worth talking about with your GP and a clinical immunologist.

Don't be afraid to push on these doctors a little bit and get the testing you need that could lead to new treatment options.

I just had my LLMDs order the whole immunoglobulin profile through LabCorp, since I basically get all testing for free now because of my job. It's a long shot and I wish I would have done this when I was at the worst phase of my illness. If my tests come back low, then they are going to send me to an immunologist that they recommend who can do the vaccine challenge. Again, it's pretty much a long shot.

I did not know there was a difference between immunologist and rheumatologist so this is very interesting to me and will research further. I am also curious about the "vaccine challenge" and "vaccine testing". What is this in reference to?
Thanks and keep digging and fighting everyone.