At 11:55pm on January 29, 2016, Chris said…
I should clarify I am not blaming ivig. I’m obviously jumping to conclusions.
At 10:58pm on January 29, 2016, Chris said…
Thanks for adding me. My husband was diagnosed in 2011. One year after a benign Tumor was found in his L3 vertebra. He took ivig treatments at first and became frustrated that they didn’t help and stopped. Not one to take any meds finally agreed to predisone 2 years ago. I’d call it the miracle drug. Although tons of side effects which have yet to catch up to him.
He has tried plasma phereris once. That tools him completely down. I hope he never had to resort to that again.
He’s is once again being treated with ivig. He’s says it helps for a day or two but that’s it. In the 5th year of this disease it has traveled from his feet to his waist and now in his hands. He tried up until this week working. In contruction!! He has drop foot or foot drop. Has had it for 6 years. Before diagnosis. Walking is such a task to say the least. He sometimes looks as though he’s dragging a tractor behind him. He’s legs get very inflamed. He’s muscles in legs get super tight. Finally this past Monday he’s been stopped in his tracks point blank. He has had a heart attack. Has 50% blockage to his left main artery. While I don’t think we eat bad or good. I want to say normal. Or diet isn’t great but it isn’t bad. He did smoke but very rarely. One pack per week? He is 46 years old 5’9 and at this point approximately 145 pounds. Very slim. I’m aware of men who work in construction being worn out more than the average man but honestly at this point he’s a foreman for last 10 years and mostly the brains. A heart attack? I’m floored. I have contemplated last weeks ivig to blame. With that said God bless those thousands of donors per bag!!! Bless their hearts. For some being treated with this is a god send. I’m am up in arms with this disease. I am rolling with the punches of mixed emotions. Miserableness. Depression. I try so hard to understand. But he says I never will
At 11:55pm on January 29, 2016, Chris said…
Hi Chris, no one has answered this yet. That is kind of unusual around here! But, I'm sure before long someone will. I hope you are having a good weekend.
Chris, I hope the worst is behind you both. I started with a diagnosis of GBS and became worst case cidp for over 3 years. Neuropathy was 100% with cranial and cns involvement even on high doses of both ivig and prednisone and considering stemcell and chemo. I thought I was buying time with the meds. Miserable, depression, yes and then some. After 3 years I buried myself in research and made changes. Thankfully now, I can run. I have all my fine motor skills back. I am off all medications, 9 months and counting.
Like your husband, I don't think anyone could understand how hard it was. I couldn't wrap my head around it myself. The good thing is, no one needed to. It was enough for them just to stay.
I had an ekg within the first few months because of chest pains. I was 47, and thin. I assumed it was normal because no one said otherwise. Chest pains continued. I wasn't sure if it was my lung cramping, heart or both. Long story, short, I went through records. EKG revealed a heart attack or bad leads. I did another ekg, which revealed more of the same and was sent for an echo which fortunately is normal. Here's what I've learned.
Go through all his records always. Drink lots before, during and after ivig to keep bp low. BP rose even 3 days after ivig. I monitored with a wrist device. I was low normal b12 and supplementing. I was deficient in folate and never told. They were probably overlooked because of the iron deficiency. I now know you can have pernicious anemia with anything under 350 b12 levels. Japan's more modern criteria is 550. If there is pernicious anemia many nutrients need to be evaluated. I used Nutreval by Genova to test. Spectracell is good too. 30% of us have a mutation in the mthfr gene and require Methyl forms too. Note, levels won't be accurate if your taking supplements within 2 weeks of testing. I switched to Methyl type B12 and Methyl Folate/Folic. Methyl forms are good for everyone. I take on an empty stomach 1 hour before I eat. I had iron infusions. Chest pains stopped completely and my neuropathy improved. I learned that Red Cell Distribution Width, RDW, levels are a newer indicator for heart health to monitor insufficiencies in iron, folate and b12, with or without anemia. Before I corrected b12, folate and iron, I had very high RDW levels and after corrections, the levels remain low normal. RDW is usually found in Complete Blood Count.
I hope this helps. If you have any questions let me know.