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Discussion Starter · #1 ·
I began these treatments yesterday to treat an autoimmune neurological disorder that appeared along with type 1 diabetes. That disorder most closely resembles Stiff Man Syndrome and is so diagnosed, but is not exactly that.

IV IG is administered for Stiff Man, Kawasaki Syndrome, sometimes HIV and various other autoimmune disorders.

Each treatment takes 4-6 hours, delivered two days back-to back once a month for 3-6 months.

This post is to address the lack of personal accounts available on the internet.

Naturally, the IV itself is merely boring while tethered to a pump system and the nurse administering. At least it's done at home in my case.

Four hundred mgs of ibuprofen and 25 mgs of Benadryl are given to stave off headache and anaphylaxis. Epi pens are at hand as well for the latter.

Seventy mgs of immunoglobulin are delivered at each treatment. The material is derived from blood donations at great cost. The associated medical supplies have been delivered by special courier at odd hours.

Thus far, the only obvious side effects have been substantial nausea and vomiting along with fatigue. None appeared until a few hours following treatment.

Another nurse arrives today for the second treatment. No discernible improvement in symptoms as yet.

There is also hope for improving my very poor glucose control. IV IG should boost autoimmune systems and perhaps at least delay further deterioration of pancreas function.

I'm somewhat hopeful that others similarly diagnosed and treated will run across this post and respond. Stiff Man is very rare and it would be terrific to hear from anyone else so afflicted. It often is associated with type 1 diabetes and the GAD 65 autoimmune antibody marker with which we are familiar although generally in more elevated levels.
 

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John? I've added tags to this post, because that's supposed to help with searches. Others here surely know better than I how it works, and you may be able to provide additional tags than just the ones I copied from your text.

I so hope you begin to see positive results quickly.
 

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Sending you good vibes and nothing but the best results.
 
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I went looking for information about SMS and found a UK support group website: SPS Support Group UK and Ireland.

While they limit membership in the forum to those in the UK, they have a facebook presence and apparently communicate with people from all over the globe. There's a link to Facebook on the site.

I'm really sorry you have to go through this and hope the treatments will benefit you.
 

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I read about IV IG and am amazed at what medical science can do. You are in my thoughts and prayers.
 
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Discussion Starter · #11 ·
While they limit membership in the forum to those in the UK, they have a facebook presence and apparently communicate with people from all over the globe. There's a link to Facebook on the site.
VeeJay, thank you so much. Sadly, the Facebook site requires your real name to join and is open to the public. It's interesting though to read the posts and at least see what others are doing for relief.

I'm praying for guidance about making this public. Many of my Facebook friends are former students. I haven't posted anything there about any of my illness including diabetes and the many complications I've had.

One thing I love about this place is the relative anonymity where we can have open discussions freely!
 

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VeeJay, thank you so much. Sadly, the Facebook site requires your real name to join and is open to the public. It's interesting though to read the posts and at least see what others are doing for relief.

I'm praying for guidance about making this public. Many of my Facebook friends are former students. I haven't posted anything there about any of my illness including diabetes and the many complications I've had.

One thing I love about this place is the relative anonymity where we can have open discussions freely!
I completely agree about being anonymous on the Internet. I do not want my health conditions made known to the general public. Plus, I have "off" days and my comments and typing is not always intelligent and precise.

I do participate on FB, but rarely type or post. I enjoy reading other posts.
 

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For seven years, as some of you know, I was a certain Mrs. Hermit on FB. Then the FB powers-that-be got pissy and forced me to use a 'real name'. We have yet to see how this will play out, but I'm sure there are FB folks who wonder who the heck is the old lady who replaced Mrs. Hermit! :mad:
 
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