I have all the chronic and acute symptoms associated with SCLS, and I have been diagnosed with MGUS. I've been seen by every type of specialist and none of them can come up with a diagnosis. From what I have read I am a textbook case of somebody with SCLS. Two of the neurologists I've seen have suggested it could be capillary leak syndrome but none of the specialists seem to know what kind of doctor should be treating that. The haematologist who diagnosed me with MGUS said that there are absolutely no symptoms associated with MGUS,  I'm hoping somebody this forum can help me figure out what kind of specialist I should be seeing, especially if there are any other members on here from southern Ontario.

Hello again. Is there anyone who knows of a doctor who can diagnose me from Southern Ontario? Dr. Druey is from the U.S. I have MGUS and think I have SCLS (chronic form) -- if anyone knows of a doctor who can diagnose me from Ontario that would be wonderful -- or if anyone could tell me what exactly my doctor could test, that would be good too. I just need it to be confirmed so I can try to get IVIG. Thank you.

Welcome to our Community!  We have two members who are from Ontario, so you may want to look them up and contact them directly for advice: lisamcoleman and Mike1949. However, my recommendation is that you ask the physician who knows you best to pull together your medical records and history and send them to Dr. Kirk M. Druey at NIH, kdruey@nih.gov, tel. 1301-435-8875, requesting a consultation on your case.  He is the world's leading authority on SCLS.  There are many strange swelling disorders out there, and we regularly receive inquiries of your nature, and so does Dr. Druey.  He can also get answers for you from his many excellent colleagues throughout the National Institutes of Health.  Good luck and let us know how you fare!

Arturo

Thank you, Arturo. I appreciate your help. 

Hello fellow Canadians... I am currently being treated by a team of specialists in Hamilton, Ontario. My immunologist is Dr. Michael Cyr at McMaster and my haematologist is Dr. Debrah Marcellus at Jurvaniski Cancer Centre. They are brilliant and been lifesavers for me. When they are unsure, they contact Dr. Druey at NIH.  I would highly recommend both of them to you. If you have any questions, please reach out. You can message me anytime.

Lisa

Hi mberry.  My son was diagnosed 8 years ago with scls at sick kids hospital in toronto. His pediatrician is currently looking after his treatments in Peterborough hospital. I would encourage you to get your doctor to give him a call and ask his opinion.  His name is dr ian Jamieson. Hope this helps

These are wonderful suggestions, thank you both! Erintaylor, Dr. Jamieson was my children's pediatrician! I will call him immediately (although he is now retired). Thank you! Michelle

sorry, just remembering that Dr. Jamieson is NOT retired -- it was another dr. I'm thinking of (too many doctors in 2 years!) -- I'm going to call him today. Thank you so so much. He might be able to suggest other doctors in peterborough as well. M

Hello all,

I am having my first IVIG before Christmas -- the immunologist is setting it up today. If anyone has any suggestions or advice as to side effects or what to do ahead/after or anything about what it will feel like, how soon I should notice a difference (if any), what to look for, etc.. that would be wonderful. I'm nervous as we are using this as a diagnostic tool -- no one has firmly diagnosed me with SCLS but I have all the symptoms and have MGUS and so my husband and I have decided to do the IVIG to see if any changes in my health.

Thanks for any help you can give me.

MIchelle

Michelle,

I'm glad to hear this and wish you very well!  As to what to expect, there's lots of information on the web, see https://www.aaaai.org/conditions-and-treatments/library/immune-deficiencies-library/ivig, https://www.uptodate.com/contents/intravenous-immune-globulin-ivig-beyond-the-basics, and http://www.igliving.com/magazine/articles/IGL_2006-10_AR_IVIG-Infusion-Guide-Tips-to-Make-Infusion-Days-Easier.pdf  Patients with a number of conditions receive IVIG on a temporary or permanent basis.

Thank you so much. Yes, I've read a lot of the web-related articles. Just wondering if anyone has any other helpful information -- 

Happy holidays! Michelle

hello. I had my IVIG 1ml/kg on thursday. They did it really slow so it took 4 1/2 hours. It is now Saturday and I'm still feeling horrible. My head is so bad I can barely move. And I've been vomitting a bit. Very nauseous. I have a slight fever all the time. I"m just wondering if it's supposed to be this bad for this long? Could I be having some sort of reaction? I feel awful. I've taken a lot of tylenol for the headache but I think that might be what finally made me vomit. I'm on ibuprofen now and nothing else. I tried benadryl but that didn't work. I'm drinking as much water as I can. I can't imagine going through this every two weeks -- I'm booked again Jan. 3rd. I can't even tell if it's helping as I feel so awful anyway.

Thanks for your help.

Michelle

Hi Michelle,

how fast is your dose in g IVIG per hour?

I get 10 g in 2 hours. Actually 10 g (one bottle) every second hour, usually the bottle in one hour and then one hour break. Before the IVIG Yi get the recommended pre-medication. Compared to one other German patient, this seems to be very slow.

This scheme leads to 36 hours. Including two nights in hospital. I get the Ivig also during the nights.

However I get a slight headache usually for the remaining third day (after the second night), while leaving the hospital and traveling home.

I am not sure, but I think, it is a bit worse since the hospital changed the IVIG brand.

I wish you all the best and hopefully some happy holidays.

Andreas

Thank you, Andreas -- it was very slow, I'm not sure how slow -- but I had 2 regular bottles and one 1/2 bottle and it took 4 1/2 hours. It's been since thursday afternoon and now we are on monday and I"m still sick -- in fact, I think I'm flaring up -- I'm swollen, and out of breath and very lethargic. I just took a shower and almost passed out. I'm wondering if maybe I don't have SCLS then -- My hands are back to tingling, my arms and legs are swollen, I'm having trouble concentrating and breathing and I'm exhausted.

I think I won't do another IVIG until I've seen my Internal Medicine Doctor on the 10th for the first time. It feels like I"ve been hit by a truck.And I feel no better, so I wonder if that says something. It's like I'm inducing a flare up, not making myself better. We were using this as a diagnostic tool to see if I have SCLS and now I'm wondering if I don't.

I'll be in touch again when things even out -- and happy hoidays to you.

Michelle