Ron Brunelle

Your Replies

  • April 16, 2020 at 1:14 pm

    Hi Peanut,
    It’s funny you should mention it. I stopped using mine about a month ago. I was diagnosed January 2017 and started using the braces in 2019. I’ve had some therapy and had done some exercises to help with the drop foot. Not sure if the therapy helped or the Gamunex infusions are helping, but I stopped using my braces to let my feet and ankle get some use and exercise. My balance has gotten better.
    Good luck, hope you’re feeling better.

    April 5, 2020 at 11:03 am

    I have never had any kind of implant surgery.
    Ive never nailed down the cause of my CIDP. My suspicions are either the Lyme I contracted, the over use of antibiotics to treat the Lyme, or very possibly the one and only flu shot I’ve ever gotten, or the combination of all.
    Everyone’s CIDP story is different. The end result is a crippling disease we have to combat. The cause is anything that triggers your immune system to go into overdrive mode and attack your body.
    Early on in my diagnosis I lost a lot of sleep picking my brain trying to find the answers to the cause of my CIDP, it’s hard not to think about it when you’re out of work with nothing to do but think.
    Try to focus on getting your self well. You will get a lot of support and information here. I know it’s hard to, but stay positive and focus on getting yourself better. 👍

    March 11, 2020 at 4:15 pm

    Hey Chirpy Birdy,
    I understand there is a 3 year stature of limitations, from the time you receive the vaccine/flu shot until you file suit. I was told I’m not able to file a claim against the Vaccine Injury Compensation Program. I got the flu shot in late 2013, and didn’t suspect the flu shot until I joined the forum this past year. Now it all makes sense, but a day late and a dollar short. 🙁

    February 23, 2020 at 10:28 am

    When I was taking Gabapentin I developed skin rashes, dry patches, though it’s not listed as a side effect when I researched this med.

    December 27, 2019 at 2:56 pm

    Rob,
    I started Gamunex in 2017. Did a regimen for 18 months. Same as you’re experiencing, the neuropathy just kept getting worse. When I was diagnosed with Lyme for the umpteenth time, my neurologist suggested taking a break from the infusions. I agreed, not seeing any season not to. After 8 months of Lyme treatments my CIDP got progressively worse. Not just the nerve damage, I got weak, legs, hands & arms.
    My neurologist never had a plan B. None of us as patients should have to bring new ideas to the table, but if we wait for these doctors to make plans, you’ll be waiting till hell freezes over.

    December 16, 2019 at 8:50 am

    My neurologist just increased my Gamunex dosage from 45 grams to 80. I’m hoping the increase does the trick.
    Been on Gamunex on & off for 2 years, I can say I’ve seen much relief, maybe the increased dosage will help.
    If after a couple months or so I see no improvement I’ll suggest the Cellcept. I’m on Prednisone, that doesn’t seem to do anything.
    Rob, We went to the caribbean back in July, had planned to do some scuba diving with my son in Grand Cayman, I barely left the hotel room. Not realizing, I had suffered a pulmonary embolism shortly before leaving for vacation. It’s a good thing I didn’t push it and dive, I probably would have had serious issues.
    I’m probably farther along with CIDP, enjoy your vacation, but take it slow. The heat had effected me greatly.

    December 15, 2019 at 4:14 pm

    I wish I put the weight on during all this. I went from 210 a year ago to my current 175lbs. That scares me that I lost so much weight.
    What is the immunosuppressant are you on, I’m inclined to suggest it to my neurologist. I’m on Gamunex IVIG, not sure what I can mix, my doctor should know if I can combine these meds.

    December 15, 2019 at 12:32 pm

    There are good doctors and bad doctors. The more you educate yourself the easier you recognize incompetent doctors. When I informed my general practitioner in the beginning stage of CIDP, all I had was numbness in my toes. He said ”we’ll have to keep an eye on that.” Good example of a bad doctor.

    December 15, 2019 at 9:06 am

    Hey Rob,
    Make sure you drink a lot of water during & after infusions, this is important. If you don’t, you get headaches.
    My infusions made me anemic, I take iron vitamins just before, during infusions.
    My doctor never warned me about anemia, had to suffer through the fatigue until I talked to a friend, his wife took iron for thyroid issues, she was anemic. 👍
    You will find out more in in here than from the doctors.
    Keep your hopes up, I’ve been fighting with CIDP for 2 years and haven’t seen remission. Everyone is different though, if you don’t see improvement in a few months ask the doc for other options. Time is not on your side, do your research. The longer it goes the more damage occurs. There should be a plan B in mind if the infusions don’t work. I’m not trying to sound negative, hope for the best, plan for the worst.
    Good luck 🍀

    December 8, 2019 at 2:11 pm

    Dana, Where I work, MTA railroad, by state law your/my employer has to accommodate you by providing a job you’re able to do.
    I’m not sure of your circumstances, but you might be eligible for some assistance, look into the matter.
    They can’t get rid of you for being disabled.
    If I can’t go back to ironwork, they will place me in a job I’m able to do at my present pay rate. You & I both know we need that insurance. My insurance runs out after a year of being out. One way or another I’ll be going back to work.

    December 6, 2019 at 11:29 am

    Yeah Dana, I’m right there with you.
    I’ve been out on disability for 5 months, and will be out for at least a couple more. Not being able to do the things you normally wouldn’t give a second thought to is difficult. Can’t ride my Harley, can’t play my guitar, spit wood…
    Talk about feeling useless.
    I try to do small chores around the house, but that takes all my efforts.
    My neurologist recently doubled my Gamunex infusion and that seems to help. Im a little steadier on my feet. I hope my progress is not short lived.

    December 2, 2019 at 11:01 am

    Hey Dana,
    It sounds like your condition is where I was a couple years ago.
    Originally my symptoms started with numbness in my toes, that’s all. The numbness slowly crept up to my legs. My fingers followed suit, hand then arms. The last year or so I’ve progressively gotten weaker & weaker in my legs, and in the last 6-8 months my hands & arms have lost their strength.
    Those zaps by a stun-gun I had earlier on, not recently. It’s not so much a painful sensation, but very unpleasant, I described it as torture, and would happen always at night.
    I am on my second script of Prednisone. At first they helped but I stopped talking them, don’t seem to work anymore.
    I started IVIG in 2017, but my symptoms have progressively gotten worse over time. I’ve talked to my neurologist about other options, he’s not keen on stem cell therapy or plasma exchange. Maybe I’m impatient and just want to feel right again, I cannot stand being home idle. My mental health is suffering.🤪
    I guess I have no other choice but to hang in there and fight the fight. 👍🤞
    You hang in there, don’t waist time if your therapy isn’t producing positive results, be proactive. The further the CIDP progresses, the more damage you have to reverse or repair.

    December 1, 2019 at 1:14 am

    I was diagnosed in 2017 with CIDP, yes I also have numbness in my right hand, more so in the pinky and ring finger, with severe weakness, partial paralysis & tremors. Left hand not as bad, a little more functional. Arms not as much. Foot & leg weakness with drop foot, more severe on the left but the right isn’t much better. Circulation in my feet & lower legs have bad circulation and are cold to the touch.

    November 28, 2019 at 12:07 pm

    Happy Thanksgiving everyone!
    Coming up on my 3rd year anniversary of being diagnosed with CIDP. 🎂
    I just finished my 2nd infusion in my 3rd regiment of Gamunex. I receive two days of infusion a month.
    The 1st infusion gave me a week or two of some improvement & relief.
    The week before my second infusion my health declined, I couldn’t wait for the next.
    Except for a few days of relief here and there, in general I’m experiencing a rapid decline in health and mobility. Over the last year or so, I’ve lost 40 pounds. I’ve gone from a relatively healthy, 61 year old 210lb working ironworker to a 170 lb. cripple. No matter how much I eat, my appetite is good, I’m hungry, I eat good meals. I can’t keep the weight on.
    I have found a podiatrist who I receive therapy from, who has a method of restoring nerve damage.
    If you live in Connecticut.
    West Haven Foot & Ankle.
    (475)238-7400
    I absolutely recommend them.
    I was skeptical at first, but I see positive results.

    I hoping to see some improvement with my mobility, my neurologist has doubled my Gamunex dosage, Maybe I’ll see some improvement this month. 🤞

    November 23, 2019 at 9:15 am

    My 3rd infusion: Year 2 CIDP
    The 1st infusion in this series had minimal effects, some short term improvements.
    The doctor ordered an increase of dosage, but I’m having trouble with the insurance company with coverage. I just want to get better and I have to deal with this shit.