jon swanson

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Viewing 15 posts - 1 through 15 (of 22 total)
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  • in reply to: Personality changes post illness? #117586
    jon swanson
    Participant

    I have to admit my wife popped my bubble stating that cancer survivors go thru something similar?

    in reply to: Immune system Post GBS #117574
    jon swanson
    Participant

    Thanks Tyler, you made me optimistic, curious if you are over 40?

    in reply to: Shortness of breath I mo after IVIG #117449
    jon swanson
    Participant

    Responding to Terry S. I am 14 months in recovery, and my goal is just to be able to drive my truck again. What stops me, is my concern about my general energy level and how far can I walk without getting overwhelmed with foot nerve pain. I was forced to do some back yard weed wacking for my little dogs. I worked for about a 1/2 hour till I was totally exhausted. I was down to just 2 – 25 mil. Lyrica’s a day. The next day my foot pain was so severe I went back up to 150 mil. of Lyrica and even that did not work. This pain has lasted 4 days now. I was wondering if I should “get back on the horse” (former marine) and try it again in a few days, or just stick with the basic treadmill exercising I have been doing for about 6 weeks without any major pain? Its a waste of time talking to a doctor about it, they are clueless.

    in reply to: GBS without treatment ? #117448
    jon swanson
    Participant

    I am 65 and 14 months into my GBS illness. I just started walking without a “walker” at about 11 months. Have been exercising on a tread mill using the arm supports to lessen the foot pain. I have been taking Lyrica for the nerve pain which is worse in my feet and then my hands. I had twice as much nerve damage on my left side which I am grateful for, because I was able to escape having to use a wheel chair. I did not respond to IVIG at all. Never tried PE. Your father received much better treatment than I did living here in San Diego, USA is all I can tell you. Lots of bad doctors here.
    They have a few centers dedicated to this disease, but good luck getting to one. I would try contacting one of those.

    in reply to: Newly diagnosed GBS and terrified #117404
    jon swanson
    Participant

    Hello Cathy, hope you are doing better at this time. My “band tightness” has slowly subsided, I still get it but minor though still scary, at this point. (14 months post initial symptoms). I thought today I would try the CBD for my hand and foot nerve pain instead of lyrica. That stuff will make you daffy after awhile. If you need a bathtub “elevator” let me know, I will ship it to you free of charge. Amazon link description below.

    https://www.amazon.com/gp/product/B00ABOHTK4/ref=ppx_yo_dt_b_search_asin_title?ie=UTF8&psc=1

    in reply to: No Sleep & Hallucinations – any one ? #117392
    jon swanson
    Participant

    It’s the BENEDRYL. That stuff makes me wacky. Try some red kratom 4-6 grams in some koolaid to help with sleep. Been using it for almost a year regularly. Kratom got me off of Oxycodone also.
    I buy from cali botanicals.

    in reply to: Anyone sue a doctor for bad diagnosis #117387
    jon swanson
    Participant

    (update to prev. post)
    My GBS symptoms were in BOTH legs, but I was only paralyzed in one leg.

    Also the 1st neuro that tested me within 4 weeks, actually stated it could be GBS, but it was a “long shot”, and just ignored it. Can anyone tell me how this is not malpractice?

    The 2nd neuro I saw about 4 months later diagnosed it within 15 minutes! I then waited another month while the doctor played games with the insurance co. because I was diagnosed after 3 weeks of symptoms. Maybe the IVIG would of worked? It did not work 5 months into the disease.

    There are a lot more “bad” doctors out there than good in my experience, especially in San Diego.

    in reply to: Medicinal Marijuana and CBD Treatments #117330
    jon swanson
    Participant

    Lyrica is better, I think most people agree here. I’m still taking 50-100 mils per day. Its dirt cheap now. Less than $40 for 90 pills at Costco using a goodrx coupon. I used to pay $150 with insurance. If I take 3 a day I get an occasional spinal twitch, like a shock. So I use it with caution as that can become permanent. I was smoking pot 24/7 for the pain, but now just at night.
    I developed quite a tolerance. I would NOT suggest the cannabis concentrates or the vapes.

    in reply to: Opening PANDORA’S BOX ??? #117304
    jon swanson
    Participant

    Thank you for the heads up on Cipro. I had a work buddy went to the E.R. due to it. It puts me into some form of “toxic shock” after a couple days of usage. I will be cautious moving forward with all prescription drugs. (1 year post GBS)

    in reply to: CIDP What caused it? List all meds you are taking #117261
    jon swanson
    Participant

    I think its a stretch to include pain meds.

    in reply to: numbness -> second round of IVIG? #117260
    jon swanson
    Participant

    I still deal with daily discomfort at this point not as much pain. Numbness still exists in my feet and hands and occasionally my diaphragm muscle. (thats the scary one), and this is a full year post diagnosis. I only take 100mg lyrica a day. Kratom’s like drinking a couple beers at its best. Pot is a good pain distraction. Trick is to find the right strain. (Some strains can make you more sensitive to the pain) Looking forward to the day that I can stop all three “meds”. Best of luck.

    in reply to: CIDP symptoms now after GBS in 2002 #117250
    jon swanson
    Participant

    Hey Jim-LA. I have a child hood buddy (10 years younger) who is paralyzed from the waist down from getting shot in the neck scoring crack in N. Philly. I used to think that this disease was my karma for being an example to him some 25 years ago. I have been meaning to say hello to you.

    Curiously now being a year post initial symptoms, I have a mild reborn feeling. If you ever need a place to stay, I am in La Mesa. Peace.

    in reply to: numbness -> second round of IVIG? #117249
    jon swanson
    Participant

    Nothing personal, and sorry I was not more uplifting. I was in the same boat as you as far as walking. I could always hobble around using a walker too. I learned more about this disease from my IVIG nurse. (it made me worse). She covers all of southern california. This disease is much more prevalent than I thought. She told me that since I was able to actually hobble around that I would be fine. She was right.

    If Kratom is not illegal in your state, I would suggest it. I can supply a good link for purchase.
    Worked wonders for me in combination with Lyrica, which is dirt cheap now having gone generic.
    I also smoke alot of pot. I am officially a year in, and just trying to get to the point where I can drive again. I don’t trust myself yet, as my one bad leg can still numb up pretty good and I get just physically tired fast. Stress seems to be the biggest setback mechanism. So avoid it at all costs.

    in reply to: numbness -> second round of IVIG? #117234
    jon swanson
    Participant

    You did not mention any extreme pain and you can walk. You should consider your self lucky.
    A lot of GBS sufferers are not that fortunate.

    in reply to: Medicinal Marijuana and CBD Treatments #117177
    jon swanson
    Participant

    Here’s my go to pain relievers after getting off of 3 months of oxycodone initial usage.

    Lyrica – down from 150 to 50 mil. max per day due to side effects. At least there is a generic now.

    Kratom – down from 16 grams to 8 grams per day of the red vein. There is absolutely no type of withdrawal from this stuff. Don’t trust what the web says, and it is legal except in about 5 states.

    Cannabis – the “gorilla glue” strain works the best now, you don’t give a crap about anything. (I’m retired) smoke it all day (San Diego). I remember thinking the THC extracts I used to smoke had given me the disease. Ha Ha

    I did use 50/50 CBD/THC vapes which are all over the place in California, and it worked somewhat.
    But the gorilla glue trumps it at this point.

    I can almost walk normally at 10 months post GBS. Even though feet are still half numb, and two fingers on one hand still numb. I remember when I couldn’t even open a soda bottle. Mentally I feel 100% recovered.

    Currently going thru a high dose vitamin D regime as my doctor said it was only 12 out of a 30 – 100 blood test range. I also read on web that the government did a study of people with some type of neuropathic disease and they all had low vitamin D? I do feel better from it.

Viewing 15 posts - 1 through 15 (of 22 total)