Immunoglobulin Deficiency & Benice Jo... - Lung Conditions C...

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Immunoglobulin Deficiency & Benice Jones Proteins.

17 Replies

Well looks like my doctor 👨‍⚕️ is being proactive in quest to find out why suffering bone 🍖 pain HOT sweats I equate to male menopause.

He said had good idea 💡 what was up AND just today I realised WHEN I seen urine TEST for benice jones protein’s.

Yup looks like my IGM Antibody definancy predisposes me to a MOUNTAIN ⛰ Of CANCERS and or multiple mayloma.

Was a tad of a shock to read SOME people never recive treatment for some forms of blood cancers.

HOW why that works have good idea ITs not down to patient.

Is nice to see my doctors being vigilant WHEN it comes to my risk.

Anyway if there are any other immunoglobulin siffers out there that can share experience n risk GET in touch

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17 Replies
SquirrelsHolt profile image
SquirrelsHolt

Its that old saying "it never just rains,it pours"! My, what a hell of a lot of things you've got going on JAS. Dad as well. Fair play to your Doctor this time he seems to be making himself busy,getting to the bottom of things. Fingers crossed you come out of this with a proper diagnosis and care/treatment plan.x

in reply to SquirrelsHolt

To be honest Seen care treatment dad as recived lucky for me AM not botherd any more.

Don’t think my cat 🐈 is either lol

But like that say what el be will be SO just do my thing till illness disease stops me.

SquirrelsHolt profile image
SquirrelsHolt in reply to

Oh JAS, that's not you....you are the man who has fought tooth and nail for every single diagnosis,all along the way. For you and for Dad. Can you imagine if you hadn't had the ability to look at things and pass your concerns onto the medical people? Where would that have left your dear Dad and where would you be now ....still with all your illness's but now your doctor is finally playing ball. I've read your posts for many months and you've had times before when you'd had a gut full. This is one of those times my friend....hang on in there,one day at a time,until that JAS attitude has a well earned rest and can come back with a vengeance,eh?

Dont like to hear you down in the dumps mate. Take time out,rest your brain,try to relax because tomorrow is another day. Yes?

in reply to SquirrelsHolt

Am not really down in dumps JUST lacking fight these days

Can’t fight every one ... but right about Doctor the checking everything from liver to bone density to inflammation.

Makes a change for them just to do it .. rather than fight tooth nail.

Tricity125 profile image
Tricity125

Hi. Jeff. Just I quick hello All you can do is your best. I think you have done so and some bless you and your father. Take care. 🌈🦋😼

in reply to Tricity125

Hi Tricity cheers n thanks

HungryHufflepuff profile image
HungryHufflepuff

Hang in there, don’t give up the fight! It’s true that it’s exhausting having to fight all the time. It’s good that your doctors coming through on this one though. Your cat seems to have everything under control 👍

in reply to HungryHufflepuff

Think my cat as things to under control lol

HungryHufflepuff profile image
HungryHufflepuff in reply to

I think we should all just stay in bed and let our cats sort everything out for us. They could just let us know when it’s done.

Ergendl profile image
Ergendl

Keep on truckin'. Now you have a key piece in the jigsaw - hope it leads to better treatments for you.

in reply to Ergendl

Hi Ergendl is all intreting stuff really the say immunoglobulins issues deficiency and psoriasis go hand in hand really.

So still reading researching it

Fisherboy profile image
Fisherboy

My husband has suffered from hypergammaglobulinemia for 15 years and been treated with immunoglobulin infusions for the last 10 years. He also suffers from Bronchiectasis and has done for the last 15 years. His Bronchiectasis has worsened dramatically over the last year causing his consultant to involve an immunologist in his treatment. They have now, after investigating all the many symptoms and illnesses he has suffered in the past, decided he suffers from CVID (Common Variable Immune Deficiency) and has probably suffered from this all his life. They have decided to treat him with extra immunoglobulin intravenously every three weeks. Although they have said they cannot reverse the damage that has been done to his lungs, they may be able to slow down the progression of the disease In his lungs. They cannot improve his Iga levels but may be able to increase his other ig levels. I’m not sure if this relates in any way to what you have been diagnosed with but just thought it might help.

in reply to Fisherboy

Hi Fisherboy makes perfect sense really AM still reading up but guess it’s deposited stuff that’s caused issues.

By any chance as he ever suffers from psoriasis.

Fisherboy profile image
Fisherboy in reply to

No ,not psoriasis, but he has had non Hodgkin lymphoma, spleen removal, sepsis,pneumonia,scarlet fever as a child etc. It seems the lack of sufficient ig antibodies causes him to be unable to fight infections without the aid of antibiotics, which he is on permanently. I think you may suffer a different illness as I have never heard off Benice Jones proteins, but you may share some of his broblems with extremely low ig antibodies.

in reply to Fisherboy

Hi I never knew was sub devision classes of immunoglobulin disorders.

But I do now it’s all very interesting really but it SOUND’s like your fella as sufferd with form cold agglutinin disease as that’s linked to non Hodgkin lymphoma and world of stuff you have described.

Clearly am no expert and just speculating chatting exploring avenues.

Guess in vain hope our chats will lead to discoveries in wider fields of specialist medicine treatment’s

Fisherboy profile image
Fisherboy

Hi Jeff Thank you for your reply. I don’t think my husband is suffering from cold agglutinin as on the Internet it states that there has to be an over abundance of ig m antibodies and he has hardly any, but thanks for your interest. I hope you find some answers for your illness soon, it really is best to explore all avenues for yourself with these type of symptoms as they are not common, so good luck and keep positive, there are answers out there!

in reply to Fisherboy

Hi Fisherboy defo agree about different avenues.

Currently issues findings are have taken me to reading up on tyrosine kinase following dentists visit and lack of pain during tooth procedure.

Dentists was quite amazed with my abnormal reflexes THINK this something going on and sure it as something to do with antibodies and tyrosine kinase

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