[RandomJoe]

Hi,

I'm getting pretty desperate here cause of my symptoms and because doctors doesn't seem to know/care/too busy...

Background briefly...
I've had Diabetes (type 1) for over 20 years and was recently diagnosed with some very rare autoimmune disease affecting short-term memory. Because of that new founding, I've had two rounds of IVIG (Nanogam) and Cortison (NatriumChlorid Viaflo, or something). The second round was about two months ago.

The problem is, that just recently I have started to feel really cold. Like freezing. I read somewhere that that the cold may be a problem while on the infusion but didn't find any suggestions that it should be a problem AFTER the infusion? Again, I had no problems while I was receiving the product. Didn't feel ill/cold at all. Now, after seven weeks or so, I feel like I'm freezing to death. And then when put more clothes on, I start to sweat. So whether I'm sweating or I'm freezing.

At the same time my need for insulin has raised dramatically. Although the need for insulin raised naturally because of cortison while I was on the infusion but after infusions were done it quickly settled down to a normal state. Now it seems like it has gone back up even thou I'm not havingh any cortison product???

Is these probably because of IVIG? Some withdrawal symptom which hopefully will slowly go away? And for maybe how long does this last??? Or should I still try go to doctor for this... Basically asking here if any of you have a clue whether these are something to be worry about.

I appriciate for your answers!

[mrsD]

Welcome to NeuroTalk:

I really think you should contact your doctor, ASAP.
Autoimmune disease can affect the thyroid... and being cold like
you describe is one sign of low thyroid.

Also your need for insulin will go up with infection. If you have a
separate issue, and infection, or severe virus...you would have
elevated blood sugars, and feel ill.

So because your situation is complex, you should seek medical attention ASAP.

[Glassbee]

Originally Posted by RandomJoe

Hi,

I'm getting pretty desperate here cause of my symptoms and because doctors doesn't seem to know/care/too busy...

Background briefly...
I've had Diabetes (type 1) for over 20 years and was recently diagnosed with some very rare autoimmune disease affecting short-term memory. Because of that new founding, I've had two rounds of IVIG (Nanogam) and Cortison (NatriumChlorid Viaflo, or something). The second round was about two months ago.

The problem is, that just recently I have started to feel really cold. Like freezing. I read somewhere that that the cold may be a problem while on the infusion but didn't find any suggestions that it should be a problem AFTER the infusion? Again, I had no problems while I was receiving the product. Didn't feel ill/cold at all. Now, after seven weeks or so, I feel like I'm freezing to death. And then when put more clothes on, I start to sweat. So whether I'm sweating or I'm freezing.

At the same time my need for insulin has raised dramatically. Although the need for insulin raised naturally because of cortison while I was on the infusion but after infusions were done it quickly settled down to a normal state. Now it seems like it has gone back up even thou I'm not havingh any cortison product???

Is these probably because of IVIG? Some withdrawal symptom which hopefully will slowly go away? And for maybe how long does this last??? Or should I still try go to doctor for this... Basically asking here if any of you have a clue whether these are something to be worry about.

I appriciate for your answers!

Hi, I've had Reflex Sympathetic Dystrophy for over 12 yrs. I'm a 71 yr oooold lady. I don't sweat because of of my disease. I take a LOT of meds including BOTOX injections (about 12 of them) in the back of my neck every 91 days for the rest of my life to keep me steady enough so I can walk & see straight, etc. I was surprised when I heard you say about the coldness! I thought that was only for R.S.D.people! My temp. is always low & I need to be in a room at least 76% or warmer. My Rt side is affected more than my Lt. But it probably affects you all over- right? Do you take tons of meds too? Just curious. I have an under electric pad on my bed; also a Sherpa electric blanket on top of me, with a quilt on top. I hope something I've said helped. Sincerely, Judy Vollbrecht

[Glassbee]

I just wanted that I, too have the memory loss. They call mine Brain Misfiring. Since getting getting RSD, I lost most of my voice, hearing(tubes in both ears) & since last year(I could see) Doc said he never saw a change in sight so quick. I can't even be tested for glasses. I get too dizzy to do it! This is not old age, I'm just lucky that I'm the age when I got it. Poor little children get it too! But then they get Diabetes too! Best of Luck!

[RandomJoe]

Originally Posted by mrsD

Welcome to NeuroTalk:

I really think you should contact your doctor, ASAP.
Autoimmune disease can affect the thyroid... and being cold like
you describe is one sign of low thyroid.

Also your need for insulin will go up with infection. If you have a
separate issue, and infection, or severe virus...you would have
elevated blood sugars, and feel ill.

So because your situation is complex, you should seek medical attention ASAP.

Yes I do have elevated blood sugars and do feel ill. Maybe not all the time but very often. Because of these I went to emergency couple of days ago. They just basically told me that of course you feel ill because your blood sugar is so high. No kidding... I'm just wondering, why not the insulin doesn't lower the blood sugar the way it used to. At the emergency artery blood test was taken from me and they said nothing was found. No infections etc.

[RandomJoe]

Originally Posted by Glassbee

Hi, I've had Reflex Sympathetic Dystrophy for over 12 yrs. I'm a 71 yr oooold lady. I don't sweat because of of my disease. I take a LOT of meds including BOTOX injections (about 12 of them) in the back of my neck every 91 days for the rest of my life to keep me steady enough so I can walk & see straight, etc. I was surprised when I heard you say about the coldness! I thought that was only for R.S.D.people! My temp. is always low & I need to be in a room at least 76% or warmer. My Rt side is affected more than my Lt. But it probably affects you all over- right? Do you take tons of meds too? Just curious. I have an under electric pad on my bed; also a Sherpa electric blanket on top of me, with a quilt on top. I hope something I've said helped. Sincerely, Judy Vollbrecht

Yes I'd say it affects all over me. And I wouldn't say I take tons of meds. "Just" SSRI-meds in addition to insulins.

[RandomJoe]

Originally Posted by mrsD

Welcome to NeuroTalk:

I really think you should contact your doctor, ASAP.
Autoimmune disease can affect the thyroid... and being cold like
you describe is one sign of low thyroid.

Also your need for insulin will go up with infection. If you have a
separate issue, and infection, or severe virus...you would have
elevated blood sugars, and feel ill.

So because your situation is complex, you should seek medical attention ASAP.

Ok... Yes I do have elevated blood sugars. A couple of days ago I went to emergency and they took "artery blood sample" from me or something like that. The doc said everything's ok. Well as far as my illness/feelings are concerned, everything's not ok at all thou. Sigh...

[mrsD]

I think you need to see the doctor who supervises the IVIG treatments. At least call them and discuss your long term reaction etc.