Immunoglobulin

[Mørphi]

As a child I drank loads of Hi-C, Ecto Cooler was my favorite. Unfortunately, I don't think this is why I don't have enough goblins.

I received the results from a follow-up blood test today. I'm deficient in a few areas:

Immunoglobulin G, Qn, Serum - 467 L mg/dL
__Normal range: 700-1600

IgG, subclass 1 - 207 L mg/dL
__Normal range: 422-1292

IgG, subclass 3 - 18 L mg/dL
__Normal range: 41-129

Immunoglobulin A, Qn, Serum - 81 L mg/dL
__Normal range: 91-414

IgG subclasses 2 & 4, Immunoglobulin M and Creatine Kinase were all within their proper range but were all also on the low end.

The doctor said that with levels this low, which he described as rare, he'd expect to be seeing me due to long term chronic infections, bronchitis, pneumonia etc.

I have none of these. Aside from pneumonia once about 20-25 years ago, I can't recall ever having anything like these.

He's going to confer with the Rheumatologist & Neurologist after my appointments on Monday. His first suggestion, aside from to keep digging, is to begin replacement therapy as soon as possible.

Is anyone familiar with this type of result? One thing I don't understand is how I can have levels this low and not have problems with chronic illnesses.

[SNOOPY]

Hi Mørphi,

I have absolutely no knowledge about the blood work results, but maybe someone will understand them

[Mørphi]

Hi Snoopy

Thank you for replying! Idk much either so hopefully there is someone with some sort of understanding.

I've tried reading as much as I can today but none of it makes much sense to me. The more I read the more I feel I was handed a death sentence yesterday. The reasonable side of me says that if that were true though, the doc would have had me admitted to the hospital directly

[mjan]

Glad to see you posted here. Try finding autoimmune disease forums besides MS to post too.

I just have a feeling that once you get to the appropriate doctor(s) they will know what this is and what is going on with you. I have a good feeling that it will be something treatable.

Remember you are what you think so you don't want to manifest something worse. Stay in the moment, use your faith and pray to be lead to the best doctors for this problem.

Hang in there!! You're NOT dying!!

Hugs, Jan

[JerryD]

Thanks for posting. You reminded me of an 'off-label' use of immunoglobulin where a neurologist prescribes IVIG for the treatment of PPMS. I was told this by a fellow PPMSer about a year ago. I lost contact with this person and do not know about her condition at this time. If this was an option for me I would be seeking it out. Good luck in your journey

[Mørphi]

Hugs to you Miss Jan

I'll be seeing the rheumatologist on Monday for the first time. That'll be a rheumatologist, a neurosurgeon, 2 neurologist (1 of which is an MS specialist), an orthopedic surgeon, an oncologist and a chiropractor all working together to keep me from falling to pieces.

My concern with the immunoglobulin deficiency is that while I haven't been ill with infections, pneumonia, bronchitis, etc, it would seem the probability isn't on my side.

If my immune system continuously plays black on the roulette table of sickness, it's only a matter of time before red wins. Guess I've been lucky so far.

I'm with you, they'll figure it out sooner or later and perhaps they'll even learn something new from my experiment.

[Mørphi]

Hi JerryD

The oncologist & I spoke about just that yesterday. Apparently the IVIG therapy has been helpful to some people with MS as well as fibromyalgia. He's hopeful, though not overly optimistic, that with the monthly treatment some of those symptoms may also be subdued.

[aburke]

I had those low levels the years ago. Until my doctor decide to put me on IVIG fusion. Which begin those levels back up. What immunoglobulin is is your antibodies and blood cell count in your body. It is the defense in your immune system that fight off foreign objects. Which with having MS immune system already weak and easy to get sick very sick. Our MS meds already lower the immune system and the IVG fusion rise it.

I love it I had less attacks and didn't get sick do easy. I have not have the flu for four years. You may be tried and have headaches day after for about two days during first few treatments. Then your body adjust and you feel like you have a new body more energy then you had in a long time. The nurses at the infusion center will be happy to answer questions about the treatment. I would recommend though when they often the benadryl to take it.it help with the headache.

[Mørphi]

Thanks Aburke & I'm glad the IVIG has been helpful for you!!

I'll certainly take whatever they offer me lol. I should know more next week.

[mjan]

How did your appointment go on Monday?

Are you all right?

Hugs, Jan

[Mørphi]

Hi Miss Jan

Ugh, ugh & ugh!
The neurologist, whom I saw first, released me with no further follow-up. He stated that he felt after his exams and various tests the the culprit of my ailments isn't neurological and that the rheumatologist would be able to help.

The rheumatologist appt was very brief. Her findings suggest to her that I have neurological problem. So, I'm at an impasse it seems.

I spoke with the oncologist/hematologist/internal medicine-ist and learned that the 2nd test of my immunoglobulins came back lower than the first. Now we're just waiting I'm the pre-authorization from insurance to start the IVIG therapy.

Next step is to find another neurologist and the oncologist said he'd help me with that. LimboLand is still my home

[mjan]

I can understand why you are so frustruated..arrghh

So did this Rheumy have all the labs and didn't order any additional tests? Hmm..if she thinks its neurological, then what kind of neuro should you see? I would keep what she says in mind to tell the next neuro.

Now I know this is challenging and its okay for feel upset with all this. Maybe you're going to feel so much better after this IV therapy works.

And at least this oncologist will help you with further referrals and probably also follow up with you as well, right?

Hang in there best you can.. just another piece to this confusing puzzle.

Warmly, Jan

[Mørphi]

Very frustrating indeed. Especially considering I still feel like I was hit by a dump truck carrying a load of poo, then steamrolled twice.

Yes, I'll be in regular contact with the oncologist. He thinks the authorization will come through within the next day or two. From there the monthly therapy will start and it'll be a life-long situation. They've now confirmed by multiple tests that I'm not making near enough immunoglobulins; it's an immunodeficiency that won't self-correct.

Also yes, he's going to make a referral to another neuro. It seems there were numerous "interesting" spots on the MRI that he feels needs to be investigated. One of which is in my left frontal lobe, and is from the major head injury, is just over a 1/4" wide by 1" long. It's placement is what concerned him.

It's wait and see for now but I'm patient. Besides, I'd prefer knowing what's causing all my symptoms over simply taking various prescriptions to blindly treat them. Knowledge is power. I'll get there...eventually

[Ga dancer]

I have been on that roller coaster ride going from one specialist to another and most would minimize my symptoms as though I wanted to be ill and then something would be discovered indicating I was more seriously ill than I could have imagined.

I did have a lot of sinus infections (4 infectious disease docs) and finally was given IVIG. It helped my MS more than the sinus infections for the first year. My IgG levels were low discovered by a pulmonologist who also discovered I had pulmonary hypertension after cardiology referral of course.

I am well now after almost 2 years of IVIG monthly. I have a diagnosis of Common Variable Immune Disorder, recessive gene disorder where you have many infections while young, then 4 or 5 decades of good health, and then you get sick and stay sick.

I was on Rebif and then Betaseron for about 10 years, and it dawned on me that interferons reduce your immune response, and here I was getting IVIG and still getting sinus infections. I switched to Copaxone, reacted horribly with injection sites so bad that a dermatologist wanted me to go to the hospital.

I am on nothing now - may consider Tecfidera because it does not reduce your immune response but is an anti-inflammatory. My C-reactive protein has always been sky high yet no one does anything about it. Why test for it then?

I have not been to any doctor since October, which is like a lifetime. I am enjoying this good health since I was physically sick since 2003. I have gotten feeling back in my feet which were numb up to my knees. My husband and I go ballroom dancing again each week (ahh, I never thought that possible) and I am actually interested in doing things again. I had EMG studies which showed nothing below the knees and even had loss of motor nerves on my left foot yet now I can feel uneven pavement with my feet.

I was in a wheelchair in 2011 - could not move my legs, it was as though there was a disconnect below my waist. And now I'm will have those jelly legs which I first start out, but I can walk almost as far as I want.

I hope the cause for your immune dysfunction is as benign and your IVIG treatment is even more successful. The IgG immunity is responsible for respiratory infections. I only felt well when I was on both antibiotics and steroids.

[Mørphi]

Hello GADancer

I'm very glad to hear that the IVIG therapy worked so well for you!!

I too have CVID so I hope it'll also help me. I'm supposed to hear back from the dr. this week or Monday to find out when I can start.