Still Figuring it out..Primary & Secondary

[Northernelf]

I am one of those folks in limbo. I am treated for low IgGs - I don't make antibodies properly (I inject plasma). So....autoimmune testing (blood work) doesn't work on folks like me because that tests for antibodies & I don't make those.

So...my question...how may of you are seronegative

As in - seronegative for Sjogens....seronegative for anything else (lupus, RA, etc.) ? I really hate this limbo thing - if I know what I am dealing with I can cope, move forward. Not knowing - always guessing.

Symptoms - dry eye (optometrist tested), dry mouth (always access to water), GI isues, joint issues & pain, etc. Five years of trying to figure this out. Fiboro diagnosis (junk drawer diagnosis) - whats really going on ?

Anyway - definitely interested in seronegative experiences. 

I refuse to take anything but amitriptyline at this point because I have been diagnosed with peripheral neuropathy and I do not stay asleep and have a hard time getting to sleep. My GP just keeps saying I have an autoimmune but can't pinpoint it. I think he dismisses me because he can't help me, or maybe he thinks I'm looking for pain meds (not). Anyway, appointment with a ENT coming up to check consistently swollen neck lymph nodes and parotid & laciminal gland pain.

[Navigator]

Have you tried a rheumatologist? 

[araminta]

Your story sounds very familiar, a lot of folks here seem to be in the same limbo.

I have a lot of the Sjogrens type symptoms but so far can't get a diagnosis as my blood tests come back normal - so did my Schirmers.    The ophthalmologist said I had meibomian gland dysfunction, but didn't think it was Sjogrens;  dentist thought my mouth was rather dry but not dry enough for Sjogrens;  my theory is that my symptoms are not extreme enough for them to count as SS, even though the fatigue and eye dryness are causing me a lot of problems.   (It's so hard to prove the fatigue bit).

I do think you should see a rheumatologist, as Navigator suggests.   I also hope you have some better help at the ENT appointment.   But it often seems to take many years to get any clarity about these symptoms.

[Pete0211]

   (It's so hard to prove the fatigue bit).

Is your fatigue just something in general that you feel, or is it due (at least in part) to lack of quality sleep? I have a  Sleep Number bed, and it has a tracking system that shows my activity (or lack of it) while in bed - I can see if I have restful or restless sleep, or if I'm out of bed in a convenient graph (with a scoring system). If at least part of the fatigue is due to sleep problems, a similar sleep tracking device might help (I think things like fit bits can do this, as well as specific sleep sensors for your bed).

https://drive.google.com/open?id=0B_J1UWcbWoauQjUxLWlaVUxlUTQ

[irish]

I am really confused about your remarks about having low IgG levels, injecting plasma and not making any antibodies.

I have myasthesia gravis, Sjogrens, Bullous Pemphigoid, Hashimotos and Autoimmune ear disease plus severely low t-cells and low IgG levels. I have been on IVIG at a high dose 80 grams once a month for 10 years. IVIG is made from plasma and some people do the subq infusions. My dose is too high and has to be done intravenously.

My immunologist checks my antibodies occasionally and I do show them in my blood work. However, I do have some that are negative from time to time. My Sjogrens blood work took years to show up and they go back and forth from negative to positive. I still have the symptoms and my doc says he treats the symptoms not the blood work.

I am just curious what your doctor expects to find in your blood work and if he isn't treating your symptoms because you are negative. Not all doctors get the fact that blood work is not the total answer to isolating a disease. Sometimes they have to take a chance and treat without positive blood work. One thing is that a trial treatment with prednisone that results in reduction of symptoms can show that you do,indeed, have an inflammatory process going on in your body. Good luck. Irish

[Northernelf]

I do SubQ - and have bee doing so for over three years. My immunologist says I have "hypogammaglobulinia, likely CVID". With CVID one doesn't produce antibodies well. My leukocytes & reticulocytes are a little out of whack too. I once had a weak positive ANA but only once.

I have read plasma is used to help autoimmune issues...my just seems to continue to worsen.

I've been trying to figure out joint pain for almost six years. I saw two rheumies back then, had an MS scare from one (white matter in the brain) but a neuro ruled that out. I went on to have three pneumonias, after which point the low IgGs was discovered. I am awaiting an appointment with an ENT, in search of a lip biopsy. Two years ago I saw another rheumie who was all about the blood work and in minutes told me I had fibromyalgia, see my GP for meds.  (!!!!) My eyes are dry and I don't go far without a water bottle as my mouth is dry too.

My GP - who discovered my low IgGs because he had another patient with the same - is otherwise pretty useless. He is a prescriber first & foremost. My husband says just think of him as a tool to get what I need - I turned down another round of prednisone but got my ENT referral last time I saw him. He does keep saying he thinks I have some sort of autoimmune, that I have inflammation.

Yes, prednisone does help but I want to know what I am dealing with, it's been awhile. I need to be able to wrap my head around this and target what it is, not randomly treat symptoms without knowing what this is.

I do blood work for my immunologist every three months. He checks kidney & liver function, IgG levels and annually another big list of things. Unfortunately, I live in a smaller community. My immunologist is a six hour drive away. I think the medical people we have up here aren't so good. My ENT is an hour and a half away, I hope he is worth the drive and helpful.

[araminta]

Is your fatigue just something in general that you feel, or is it due (at least in part) to lack of quality sleep? I have a  Sleep Number bed, and it has a tracking system that shows my activity (or lack of it) while in bed - I can see if I have restful or restless sleep, or if I'm out of bed in a convenient graph (with a scoring system). If at least part of the fatigue is due to sleep problems, a similar sleep tracking device might help (I think things like fit bits can do this, as well as specific sleep sensors for your bed).

https://drive.google.com/open?id=0B_J1UWcbWoauQjUxLWlaVUxlUTQ

(Apologies to Northernelf for going off at a tangent).
Many thanks for your suggestions, Pete.   My tiredness is mainly a general thing, it's there a lot of the time and I know I'm much more tired than I was a couple of years ago.   It started very suddenly with me waking up one morning and feeling as if I was paralysed.    I had to make a big effort to get out of bed.  It's not like that now thank goodness, and I do have days and even sometimes a week when I feel OK, but it does persist.   Most of the time I sleep OK although I do have nights when my nose is so stuffy it stops me sleeping.   I will certainly keep your suggestions in mind in case my sleep pattern gets worse.

[irish]

I am wondering if you are getting high enough dosages of IVIG. I have hypogammaglobulinemia which is what the 2 immune deficiencies are that I have. I get the IVIG primarily for the Myasthenia as the IVIG needs an approved diagnosis. I have severely high blood work for this also. I have been on 4 different products and am now on 80 grams of Octogam once a month and have been since November 2006.

Previously I was on Gammagard (severely allergic now), Gammunex, Privigin and now the Octogam. I have always been on 80 grams. When I started I was on antibiotics at least 7-8 times a month and sometimes for up to 28 days. I had infections all the time. I now have had very few infections in the past year, however, I am positive for MRSA and the last infection was MRSA again. I have now gotten to the place where the antibiotics that I can take, which aren't many, don't work anymore. I will soon have to go on some of the expensive big gun antibiotics when I have MRSA.

So, I was just wondering if they have every thought of increasing your IVIG especially when you probably have CVID? Too bad you can't get a good immunologist. I was very lucky with mine as he is very good. The problem is he is younger than I am but getting closer to retirement. Life is so interesting. Good luck. Irish

[keelton]

Hi!  I just saw this post .  I am in the same situation .  It was just discovered that I have low IGG and IGA during all of the screening because of my many strange symptoms !   I have dry eyes and mouth Muscle pain .  Some joint pain and my esophagus doesn't work anymore!    I am nevative for sjogrens and biopsy shows inflammation and lymphocytes but not enough for diagnosis!  That makes no sense to me.  It's not normal to have this.  What else can it be???    I am waiting on vaccine challenge.  Anyone who has hypogammaglobulanemia or CVID diagnosis.  Can you tell me more about your diagnosis ?  Were you sick all of your life??  Childhood?  Or affected as an adult??  How often are you sick ?   Do your kids also have it?     My son is one and just had him tested and he has it too?   Found it routinely not because he has been really sick.   He has runny nose all the time.   I have cold that take forever to go away and one pneumonia in my life and also staph infections in my 20,s   healthy as a kid.  Has IVIG helped you with your autoimmune symptoms? 

[irish]

keelton, Have you seen an immunologist? When you are having so many different issues sometimes it helps to get a second opinion. Also, one can be seronegative or have negative blood work and still have Sjogrens.

You can also have some other kind of autoimmune disease that is causing some of your problems. Is it possible that your low blood levels are causing some of the issues?

There is a site called primaryimmune.org that will get you some good info on immune deficiencies. IVIG is given for these deficiencies at times. I would get another opinion cause it sure sounds like you are having some neuropathy with the esophagus issues. Good luck. Irish