IGA Neuropathy

Since: Apr 07

United States

#1 Jun 13, 2007
Does anyone here have it or heard of it?
My Sister in law was just diagnosed with it. Wanting to learn more about it from ppl that have it or know someone that does?
Lisa

Jackson, TN

#2 Oct 22, 2007
My late husband was dignosed with this. Come to find out, he also had colon cancer but that was not detected until it was too late. Have her get everything checked!
Good luck
Barb Brown

Willoughby, OH

#3 Dec 11, 2007
My brother had IgA nephropathy for 12 years and in April of this year, I had to give him one of my kidneys, because his failed. We were told by Dr. McBarron that if he would have taken better care of himself with diet, watching his protein intake, etc., he would still have his kidneys. Please contact a nautropathic doctor asap to see how she can keep her kidney function naturally - without drugs - drugs only kill.
Debbie

Ilford, UK

#4 Apr 9, 2008
My son Lewis who's 9 has just been diagonised with iga nephropathy. Please can someone shed some light on what to expect from this please. we are due to go to Nottingham hosp. in a few weeks to start on a drug called Enalapril.
RIcky 0

Los Angeles, CA

#5 Aug 4, 2009
Neuropathy is nerve damage and it can occur from a variety of causes. What happens it is there is a breakdown of the myelin sheath around the nerves. Without this protection the electrical signals are not transferred properly just like if you stripped the covering off the electrical wires in you house.
As the nerve damage gets worse, the nerves either l ose their ability to transmit information (numbness) or they start sending false signals (Pain or tingling).
It is becoming widely known that certain special forms of B vitamins have a lot to do with repairing nerve damage. Some people have tried large amounts of ordinary B1, B12 or B complex vitamins and they find that it does not help them. Ordinary B vitamins are water-soluble and they wash out of the body long before they get to the required levels needed in your blood stream sot that it can begin repairing nerve damage.
I did find one product that helps. It is the WSN Nerve Support Formula. It was created for diabetic neuropathy, but it works on almost all forms of nerve damage.
nelray

Olive Branch, MS

#6 May 10, 2010
Debbie wrote:
My son Lewis who's 9 has just been diagonised with iga nephropathy. Please can someone shed some light on what to expect from this please. we are due to go to Nottingham hosp. in a few weeks to start on a drug called Enalapril.
Oh, that is so young. My son has known that he has IGAN for about 2 years and he is 41. I understand diet has alot to do with it. You still have some control, but my hands are tied. He tries to stick with a plan, but gets so discouraged. He has so much trouble with energy. The doctor finally put him on steroids, a very high dose, and now he has other conditions. Therefore, he is on 10 medicines. So, what I am trying to say, is study and find forums to ask questions, such as this. Good luck to you and I will pray for your success in beating this.
Jim

Baltimore, MD

#7 Jun 30, 2010
I was diagnosed with Iga Nephropathy 7 years ago. The two most important factors in controlling IgA is blood pressure control, and proteinuria. Enalapril is an ACE inhibitor used to control blood pressure. I take lisinopril (another ACE inhibitor) 80mg daily. My protein levels (which is a ratio) are now down to 12mg (anything below 30 is normal). I began running 5 miles a day every day this past January 2010, and my blood pressure is now in the normal range. My systolic decreased by 5 and diastolic by 6. I also take 1gm Lovaza (prescription fish oil) and 1000 IU of Vitamin D3. This has worked for me. My 24 hr protein when I was first diagnosed 7 yrs ago was 1500 mg/day. I tried low sodium diet a few years ago, but it was particularly effective in lowering blood pressure. I've never done low protein either. My doctor told me about the possibility of needing steroids, and I vowed to try everything in my power to avoid it. Exercising 5 days a week/5 miles a day has made a tremendous difference.
robert dimond

Naples, FL

#8 Dec 7, 2010
I am almost 74 and have had neuropathy for about 40 years. It has moved up to my thighs and I worry about what happens next. My hands are affected as well. I take heavy doses of neurontin to keep it under control enough to function and to sleep at night. I have problems with balance at times and can't walk much at all without resting or sitting. And I can't be on my feet long. I worry about what's in store. Has anyone gone through this or had someone close to them go through this? What can I expect? I have exercised for many years at a gym, concentrating on my legs, but I try to keep my arms and hands as fit as possible. I do have diabetes Type 2 and keep my blood sugar well under control. I wasn't diagnosed with this until many years after my neuropathy began. My circulation in the feet is great -- the doc says it's is like a teenager's, which I am told is important. I am concerned if this will eventually affect key organs -- the bladder, the kidney, sphincter muscles, etc. And what is the result if it does? I also take Tramadol but am not sure if it helps. I have taken it for many years along with neurontin, so take it just for insurance.
Hazel Croft

Nottingham, UK

#9 Dec 20, 2010
Hi there. I've recently been diagnosed with IGA myself. The specialists I've seen have told me that they have many outpatients with IGA who come for tests regularly. They have told me that but 90%
of people who have this disease are never seriously ill. So please don't be alarmed by the diagnosis or by some of the articles on the net. Best of luck
Hazel
nelray

Olive Branch, MS

#10 Dec 20, 2010
Hazel Croft wrote:
Hi there. I've recently been diagnosed with IGA myself. The specialists I've seen have told me that they have many outpatients with IGA who come for tests regularly. They have told me that but 90%
of people who have this disease are never seriously ill. So please don't be alarmed by the diagnosis or by some of the articles on the net. Best of luck
Hazel
Hazel, my son's doctor has my son so depressed. He has him thinking this is a death sentence. therefore the depression does not help the disease. He is 41 and don't want to listen to me. With very high doses of steroids his level is down to 1500, but side effects of the steroids are causing all kinds of problems. He is always on the offensive when I bring it up. So all I can do is pray for him. But I believe if he could find someone that has had IGAN for a while, he would see, it can be somewhat controlled. Anyway, I hope you do good.
Marty

Uvalde, TX

#11 Nov 26, 2011
Hey enapril and predisone in hand control this disease dont worry everything will be okay =)
josh

Fond Du Lac, WI

#12 Sep 21, 2012
I have been recently diagnosed with IGAN I was started on 5mg of lisinopril which then became 30mg a day. Does anyone know can this make the symptoms of IGAN worse. As my function was great before and now my bun is at 30 and ,creatin is 1,50 and potassuim is 5.0
white rose

Washington, DC

#13 Dec 19, 2012
My nephrologist said the majority with IgAN follow a very benign course. Try not to worry. There are things that can be done, even if you have progression of symptoms. Keep in mind that IgAN is not the result of anything a person has done, ie lifestyle or diet. Also, my dr. said there are many people who have it and don't know it. Stay positive!
Smisha

Doncaster, UK

#16 Sep 21, 2015
I'm a bit worried about mine. It's apparently effecting my blood pressure and now I also have protein in urine in addition to blood. Have previously had quite a few episodes of nephrotic syndrome too.
Has anyone had it similar to me? If so how have things panned out over the years? I have a 2 year son so I am worried about the likelihood of progression.

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