Need Help Diagnosis: igg4 scleroderma other?

[HopefulGirrl]

Hello,

Six months ago I woke up with a my tongue feeling a little swollen. The skin/glands under it was swollen as well. The next day both of my submandibular glands got swollen. While the tongue thickening goes away and comes back the submandibular swelling has not gone away in six months.

A couple months before this I was training for a marathon and was in perfect health. Suddenly I started having pain in both legs to the point I couldn't walk. I stopped exercising and one day while resting I got up to walk and it was so painful/stiff. My legs felt pressurized like you could take a pin and pop them to get some relief.

I have experienced numbness in my face and legs on and off.

Both legs broke out into what I thought were big hives but my Drs said maybe some form of vasculitis or livedo from the pictures I took. That went away after a couple hrs.

I have been to over 15 different Drs.  ENTthought sjogrens. Just saw a specialist at Johns Hopkins and he says its unlikely. I have had over 200 blood tests. Primarily all my tests repeated over and over again.

Drs are thinking scleroderma or igg4 and maybe something with my nerves.

I ended up in the ER yesterday because my throat felt like it was being constricted. The dr read my chart and spoke to my dr and said it normally gets better on its own. I said this is a new symptom. No one had been able to diagnose me so how do you know what will happen?

I am now with a very good rheumatologist at Hopkins, but its been a very long road and anyone with insight to this please it would be helpful and appreciated. I am fairly young and was so active before all of this. Thank you!

[sclerodermaorIgG4]

To Hopeful Girrl,

I have the exact same situation as you.  Would you be interested in speaking?

Have they diagnosed you at Hopkins? I am seen in Boston.

Thanks. Kerri

[vadebster]

i have a vein on my left side under my tongue that swells up and goes down happens quite often i can tell when its there i can feel it when im talking hitting mt bottom teeth  

[Dr. Kokil Mathur]

Hi!
I am sorry to hear about your medical problems. If you are not on any medications like anticoagulants, blood thinners or birth control pills then this could be due to clotting disorders, low platelet count, fragile spider veins, deep vein thrombus, deficiency of Vitamin B12, folic acid, or Vit K, a liver disease or certain cancers. It could also be due to pressure urticaria. If you are on medications then you need to discuss that with your doctor.
Also varicose dermatitis should be thought of. Dopplar studies of blood vessels of leg may help diagnose this or rule it out. Take care!

The medical advice given should not be considered a substitute for medical care provided by a doctor who can examine you. The advice may not be completely correct for you as the doctor cannot examine you and does not know your complete medical history. Hence this reply to your post should only be considered as a guiding line and you must consult your doctor at the earliest for your medical problem.