“Without IVIg, to breathe and speak simultaneously were impossible, motor functions ceased confining me to a wheelchair…”
Without Intravenous Gamma Globulin Infusions (IVIg) my symptoms had become life threatening as noted by my treating Neurologist in 2005 and my quality of life was reduced to one level above insanity. Without IVIg, to breathe and speak simultaneously were impossible, motor functions ceased confining me to a wheelchair; I had none stop vertigo making me violently seasick. Bottom line, I was dependent upon others for my most basic and personal needs.
For patients order from amazon.com Peripheral Neuropathy: When the Numbness, Weakness and Pain Won’t Stop by Norman Latov, MD PhD. Free to patients: (click here) IG Living Subscription Patients can get additional information from FFF Enterprises including BioSupply Trends Quarterly Magazine; IVIg Reimbursement Calculator; BioSupply Trends eNewsletter; and Product Reference charts.
For medical doctors order from amazon.com (click here) Textbook of Peripheral Neuropathy by Peter D. Donofrio MD FAAN 2012 Professor, Vanderbilt Medical School, Nashville, TN Excellent Resource for anyone!
View other Books on Peripheral Neuropathy at the Neuropathy Support Network.
The following series of articles detail my personal experiences and insights into my life with various autoimmune neuropathies and how Intravenous Gamma Globulin Infusions (IVIg) increased my quality of life to a level of self sufficiency I believed I would never attained again.
Article #1:
Facts About Intravenous Gamma Globulin (IVIg)
Article #2:
My Neuropathy symptoms prior to receiving Intravenous Gamma Globulin
Article #3:
Why I started Intravenous Gamma Globulin (IVIg) and how it happen
Article #4:
My first experience with Intravenous Gamma Globulin (IVIg) (IVIg) in April 2004?
Article #5:
How Intravenous Gamma Globulin (IVIg) Affected My Long Term Neuropathy Symptoms
Article #6:
Surgery while on Intravenous Gamma Globulin (IVIg) with CIDP
Article #7:
What Happened When My Intravenous Gamma Globulin infusion (IVIg) Was Delayed
Article #8:
What Happened When My Intravenous Gamma Globulin (IVIg) Dosage Was Reduced
Article #9:
How Intravenous Gamma Globulin (IVIg) Infusions Has Affected My Life
Article #10:
What Doctors May Consider in Writing the Script for Intravenous Gamma Globulin (IVIg)
Article #11:
Getting Help Accessing Intravenous Gamma Globulin (IVIg) and with Insurance and Product Brand Questions
Article #12:
Critical Needs in Intravenous Gamma Globulin (IVIg) Neuropathy Research and Training
I was dx with an immune deficiency at the age of 3, but I became ill at 18 months old. When I first went into the Hospital I was brought in for a high fever (103). The doctor’s could not figure out what was wrong. I had a seizure that last 6 hours at resulted in me being in a coma. I was transported to a Childrens Hospital. I was there for over about 3 months. It took until I was 3 to find out what was wrong. In the 70’s girls where not suppose to have problems with their immune systems. On many occasions I almost died. When I was 5 I was started on IM shots of Gamma Globulin. I was on that until I was 11 and I was switched to IVIG. Because of the repeated lung infections I have COPD, and I also have Lupus and Neuropathy. Currently I’m on SCIG. It is gamma given through very small needles in my legs. The process is simular to what diabetic’s who have to be on insulin around the clock do. It is given once to twice a week, and it is done at home. There have been articles about it in IG Living. By doing my gamma once a week my levels are constant. Which means no “highs or lows”. It has really helped me. I didn’t know that when I started it the added benefit would be that my neuropathy pain and numbness would go down. Granted I’m not saying that I do not have flare ups. I do, and when I do I’m in my wheelchair. My neuropathy really affects my feet and legs, and becomes very painful and hard to walk. I have had to give up playing my piano, because I no longer have the flexiablitiy in them to play. My hands become very painful too. I know what it is like to be chroniclly ill. I have been for 37 years, but it doesn’t make it any easier.
I hope that someday what I went through will be a thing of the past. I only gave the highlights not my whole story.
Thanks,
HEather
Heather: Thank you so much for sharing. So glad that the SCIG is working for you after so much that you have gone through….and I understand FULLY about the HIGHS and LOWS. The numbness in neuropathy is normally from the fact that damaged nerves are either not working or are sending the wrong signals to the brain, as it could be either…but was wondering if you have burning sensations and if so on the FAQ tab of the website there is a cream called NeuragenPN that has helped so many with this especially at night and found it very useful. Also you may find that Mims Cushings book listed in the RESOURCE tab may have a patient IDEA or two that will help with the painful walking etc…maybe not…but you may want to look…as in our challenge with life long chronic illness we never know where we will find something that may help. In my case the painful bone pain on walking was stopped by the IVIg infusions as otherwise walking was almost impossible. With caring regards, Gene