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.

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.

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.

I have a f/u appt with the immunologist this Wednesday. Initially when I saw her, she didn't think there was any problem but agreed to do the further testing. She said she would call me, however when her office called to schedule a f/u, I now think she might be see there is something off. I will talk to her about further testing or a possible need to see a rheumatologist.
I will learn the biopsy results on Jan 26. The neurologist is nearly certain that I have SFN and with my symptoms, I believe he is right.
ENbloc, I don't think I have an autoimmune type symptoms..I'm not even sure what they might be. My energy levels are good..I just have this horrific type pain..burning skin sensitivity..I am trying to advocate for myself...and the direction that I have comes from you and the others who have taken their time to guide me. Honestly, I would be lost without It! thank you again Enbloc!!!!

ENbloc
I just looked up the common symptoms of autoimmune diseases so now I have a better understanding, however I still don't believe that is my issue(although not sure). Both you and Kiwi suggested further testing with a clinical immunologist, however I might have to find one in NY or PA. I will talk to the immunologist who I see this Wednesday.
In order to qualify for IVIG(even if my medical plan would pay for it) would I have to have both CVID and an autoimmune disease?

I appreciate that you share your personal experiences to help me understand my current situation!!! I am sorry to read that you are now experiencing seizures!!! I hope that the doctor you will be seeing will be able to help you with this!!! I am trying to be proactive with my treatment and honestly if it wasn't for the guidance that I have received from some of the people here I honestly would be totally lost!!!! Thank you again Elaine