Diagnoses Progress

[GgcJap]

Hi Sharon,
     My igG4 has a range of 4.8~105 and mine is 153. It's measured in mg/dl. My white blood count is range 37~94H and mine is 100. It's measured x10 2/ don't know what that means?
I'm going back on the 22nd to see what he has to say. I don't doubt he's a very good Dr medically, but he really seems to want this to be igG4 and one of the reasons he said it's not Sj?gren's is because I'm male, He also said that if a woman has Sj?gren's it shows 100% in her bloods(I don't believe that) and males don't always show in their bloods but it's uncommon. It makes me think he's lying so he can treat me for igG4. This is good if it is but if he's wrong, one, I don't need that much steroids and two he's wasting time.
     I will try and get a definitive diagnosis but the scary thing is I'm thinking it can only be the one he wants. We did take into account I was on steroids and he said if I wasn't it probably would've been around 300 or so.(again don't know if that's true) He didn't say anything about my white blood count, although it's at the top end and I still don't know why.

GgcJap

[irish]

Just to let you know that autoimmune disease can affect the white and red blood cell production and that is why an immunologist would be great for second opinon. Also, if you cant find an immunologist you might get lucky and find a hematologist who could do some blood work and get some general idea about your blood work issues and he might be able to refer you to another doctor.

The reason we have to keep changing our doctor is cause it puts us in touch with another one, and another one, etc. The more doctors we see the bigger the chance of getting diagnosed. A sad truth. I did this dance for 10 years before I got to an immunologist who diagnosed me with most of my autoimmune and immune stuff. My hubby went with my much of the time and it was expensive and took up our life. Being ill can be overwhelming much of the time. It helps to keep as accepting as possible of the lot in life one has been dealt. Getting upset just takes energy and we can't afford to waste energy.

There are times when we get so tired of doctors and overwhelmed that it helps to take some time off from going to the doctor and keeping life simple and just resting up. Denial is also a wonderful thing to use at times cause it helps to keep the pressure off. The big thing is one can't do denial all the time. We have to learn to live simply and enjoy the little things in life.Good luck. Irish

[GgcJap]

Thx Irish,
     Sjodry actually found me a site for the Japanese society of immunity. I will be mailing them on my next day off. My red cells were fine(this time) but white a little high.
     One thing I did forget to mention was my igA was also low. It's only my first real blood test so nothing to compare it with but I did read about an immune deficiency selective deficiency of IgA, which funnily enough has a lot to do with secretions of the mucosal surfaces, including tears, saliva, colostrum, genital, respiratory and gastrointestinal secretions. A lot of my problems actually.
     I will keep searching, whether it be for good  Drs, diagnoses or peace of mind. I will. It stop until I find them. I will remember to rest when I need it though.
     I'm tired of Drs and hospitals already. Unfortunately I can't do denial although it seems needed for a complete rest. Very well said, I definitely have to learn to live simply and enjoy the little things.

Thx again Irish

GgcJap

   

[Sharon]

I agree your doc is saying some strange things and it sounds like he has an agenda.
That said, according to all the reference levels I checked looks like your IGG4 is indeed quite high,
so you may want to look into that diagnosis more seriously.
I also think an immunologist might provide a good second opinion.

[GgcJap]

Hi Sharon,
     Yes strange things indeed, Im not too sure what his agenda is(which concerns me) but after doing some research on various things its very likely that this could be igG4 related. Ive also had my left submandibular gland taken out because it had a 2cm stone in it 2.5years ago. My Dr is now trying to get a sample of that(from the other hospital I just sacked) to see if it was igG4 related, but it seems they dont want to hand it over. Something I failed to mention before my igA was also a little low. Im not saying my Dr doesn't know what hes talking about because a lot of what he says makes a lot of sense, and then some of what he says makes no sense at all? Very confusing but I`ll give him a chance and make a decision in the near future as to whether I need a new Dr or not.

It sounded high to me too and that was whilst I was on Prednisone 10mg, he said It wasn't very high though and even off prednisone it probably would only be double(how he knows that I dont know) and that hes seen much higher(in the thousands). But, Im now off all medicines and supplements(apart from salagen) and will ask for another blood test when I go back on the 22nd.

I will definitely be looking into the immunologist thing as well as maybe a new Dr, I've recently been told to go to a big hospital as they have the best staff and equipment, although they're quite far from where I live.  I will def be doing this if I do change because I want it to be my last as this is starting to get expensive and thats with insurance.


GgcJap

[Sharon]

Yes, this entire process of diagnosis and *correct* treatment can get exhausting and very expensive!
It's good though that you're doing all this right now when your symptoms are just becoming obvious
as for many the process drags out over years of agony until we have no strength to continue to deal with it and the disease progresses.

I really admire your determination! I too have been very determined but got caught up in bureucracy and ran up againt strict treatment restrictions that exist in my country.

Keep in mind that you can also have IgG4 disease without it showing up high in blood tests at all.
Sounds like you doc simply understands more about it than he does about SJS.
Keep us updated as to your progress on all this!

[GgcJap]

Hi Sharon,
     Your right there, it is very exhausting and expensive but worth it if I can get a correct diagnosis and the right treatment. My symptoms have just become obvious but I think I've had it for a while(as in a year or so) and just haven't noticed or put the pieces together. It was only when the mouth went it became noticeable enough for me t9 take action.

     I've read many diagnoses take years. What country are you in? No bureaucracy is never a good thing to be caught up on n is it.
     
     It seems a lot of autoimmune don't show up on bloods doesn't it and yeah I think my doctor is going with what he knows which, if that brings me the correct diagnosis and treatment I'll be happy if not he's wasted my time, time I don't have. I really pray he knows what he's doing. Either way the tests and results will be benificial wherever I go.

I go back on the 22nd and I'll post shortly after.

Thx Sharon

GgcJap