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Posts (13)

Jul 9, 2019 · Anyone been diagnosed with CIDP? It's very rare in Neuropathy

My neurologist currently has me receiving IVIF Gamma Globulin every 3 weeks. I hydrate heavily for 2 days before and 2 days after to help with headache side effects. Before the infusion I am given orally, Benedryl for possible rash side effects, and Tylenol for headache. My infusion is done slowly, taking approximately 5-6 hours as to hopefully prevent side effects. I commonly have fatigue for the next few days and sleep as needed. But I also have fibromyalgia and other chronic pain issues .

Hoping you will get some help soon. God bless you.

Jul 4, 2019 · Anyone been diagnosed with CIDP? It's very rare in Neuropathy

My IVIG is Gamma Globulin. The label on the IV bag said 10% solution

Jul 1, 2019 · Anyone been diagnosed with CIDP? It's very rare in Neuropathy

My Dr wants to do a spinal tap, too, but I'm too afraid of the pain I have so many chronic pain issues: fibromyalgia terrible pain all over my body 24/7, degenerative disc disease, bulging disks, interstitial cystitis, Pelvic floor pain, and now the CIDP on top of it…
I have gamma globulin infusions every 3 weeks. Hydrate heavily starting a few days before and a few days after. That does help some with the headsches. I, too, feel wiped out for a few days afterwards. I am treated in Grand Rapids, MI.

Jun 28, 2019 · Anyone been diagnosed with CIDP? It's very rare in Neuropathy

I agree with your assessment of the insurance inequities. You work all your life and are punished for it. Illegal immigrants get better benefits than we do, too. It's a shame. ..

Feb 16, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Wow! You certainly have a large family! That can also be a stressor. And I certainly don't mean that in a bad way…just lots of things you'd love to do with them. And how difficult it can be when you're in pain. I have that with my grandchildren. I want to be able to spend more time with them, but the pain can be prohibitive. You have to find that balance which can be hard. A supportive spouse can make a world of difference. I've been fortunate and blessed with a husband who tries to help out when he can.
I was diagnosed last May by two neurologists with a very rare autoimmune disease called CIDP – Chronic Inflammatory Demyelinating Polyneuropathy. Nobody knows what causes it (same with Fibromyalgia). But my immune system has decided to attack me by eating away at the fatty coverings (myelin) on the nerves in my feet, legs, arm and hands so far. It causes the messages from the brain to become scrambled as it passes down the nerves to those body parts and back to the brain. It's messed up my balance and gait. I started tripping and falling last fall for no apparent reason. After EMG and electrical shocks, blood tests and several doctors, that's the diagnosis. Chronic, no cure, just trying to manage the symptoms with Gamma globulin infusions every 3 weeks. I'm just following the plan…
Will you be seeing any other doctors in the future that might afford you some other ideas for treatment/relief? I wonder if CBD oil might even be an option for you? Might be.worth checking in to. It's not easy living with pain 24/7. I admire your strength and tenacity. God bless you and your family… Sharon

Feb 15, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

Hi Oregon Brad,

I am deeply sorry for the problems you've been experiencing for so many years. I work with a wonderful pain doctor who has been able to give me some relief with pudendal nerve blocks. It's very painful to sit, and sometimes I get unbearable spasms in the top of both legs, starting in the groin down to my knees. I have a muscle relaxer that helps occasionally, but not always. He said I could try CBD oil to see if it helps. I got some but am afraid to try it. Just makes me feel like I'm taking something illegal. I'm too scared to try the nerve stimulator from the horror stories I've heard. I have a pinched L5 nerve. I also have fibromyalgia among other issues.
Please let me know you are doing. We can keep in touch if you like.
May God touch you with His healing Hands.
Sharon from Michigan

Feb 3, 2019 · Pudendal Nerve Entrapment/Neuropathy/Damage in Chronic Pain

I have pudendal nerve spasms which are treated at my MI Pain Consultants I n Grand Rapids MI. My doctor gives me pudendal nerve blocks which give me some relief. I have terribly painful spasms in the front of both legs from the groin to the knees. Feels like my legs are being crushed. The spasms last for hours. it's either rare or no one talks about it.
Maybe you can talk to your doctor about the treatment I receive. God bless.

Jan 31, 2019 · Anyone been diagnosed with CIDP? It's very rare in Neuropathy

I opted for trying physical therapy first. After that it was gabapentin, which made me sick. I started IVIG infusions mid November. I had a bad fall on 12/15/18 which resulted in a concussion and a very sore body. And on January 2, 2019 I fell again. So now I have to get an orthotic for my left foot.
The pain I have from the CIDP on top of all the issues from fibromyalgia is really hard to cope with. My fibromyalgia pain is 24/7/365 for almost 20 years. I also have bulging discs in lower back and degenerative disk disease, which I have treated at MI Pain Clinic. Tack on anxiety and clinical depression and you have about 75% of my medical issues. I have a supportive as he can be husband. And I have my faith in God which is extremely important to me!
I'm so glad I found your site… I rely on Mayo Clinic for health information. Thank you for allowing me to be part of Connect. Hoping to learn from others and be helpful if I can.