Your Replies

  • March 9, 2021 at 8:13 am

    I received the Moderna vaccine, and it has been about a month since I got the second dose. I didn’t really have much in the way of side effects. A sore arm for a day or two. After the second dose I also had a headache for a day or so. The side effects were tolerable. My neurologist/PCP and I came up with a plan to hold my hizentra for a week to hopeful initiate as strong as an immmune response as possible. I also tried to stay on as low a dose of prednisone as possible. For me the struggles came with holding the meds and my disease vs the actual vaccine. I believe the benefits of the vaccine outweigh taking my chances with covid. I continue to wear a mask and will probably do so for the forseeable future. Although I was nervous about getting the vaccine there was a sense of relief after getting the series. Hope that helps you with your decision.

    February 16, 2021 at 8:16 am

    Sorry to hear about your dysautonomia. I also have autonomic dysfunction. My symptoms were initially tachycardia with minimal exertion, lightheadedness, fatigue. At one point my pulse would run in the 140’s just standing while brushing my teeth. Occasionally my pulse and blood pressure will run low, and I experience blurred vision. My autonomic symptoms are always worse in the morning, but also fluctuate during the day. My neurologist told me the same thing that it would eventually improve. It was hard to believe as I felt so crummy and at times I still do. Be patient as it does get better. It took me months and I am still on IG. Now the sub-q variety, and also take prednisone 10mg daily. I found that compressive stockings, salt, and fluids all helped. I use drip drip which is an electrolyte powder that I put in my water. My neurologist also prescribed salt tablets and midodrine. I have been slowly using less and less of the midodrine as time has gone by. Light exercise has helped. I cant do what I use to do, but try to do something daily. Inch by inch it has slowly improved for me. Hang in there as it can be frustrating

    January 7, 2021 at 1:37 pm

    Seems like you have multiple options to try if you already haven’t done so. If you already had covid, maybe ask for them to try ordering IGG antibodies to be sure. If you have immunity why wouldn’t they be confortable using an immunosuppressive such as prednisone, imuran, cellcept, cytoxin or rituxin if you are in agony? Although these drugs do suppress the immune system what would be their concern if you already had covid? What about plasmapheresis? Gabapentin or lyrica for the tingling?

    January 7, 2021 at 8:52 am

    Just wondering if anyone received or is going to receive the covid vaccine and what their response was? For me I am going to get the vaccine but am a little worried. I did receive the flu vaccine this year and seemed to be ok. I like Jim would rather deal with IVIG and Plasma exchange if needed.

    December 2, 2020 at 1:10 pm

    John just curious were you ever tested using the Igenex. I think they are based out in California but it is a controversial test from what I have read. I have only been tested using the standard IGG and IGM bloodwork, and my PCP actually even treated me empirically with a month of doxycycline.

    December 2, 2020 at 11:52 am

    I have a significant amount of facial symptoms. I get various degrees of burning and tingling to the right side of my face. This is involvement of the trigeminal cranial nerve, and was one of my first symptoms. The scig, prednisone and gabapentin have helped but it still is there at times. The sensations are the same that I feel elsewhere so I have no doubt that this is due to the cidp, and my neurologist believes it is cidp related. He has tested me extensively, and mostly everything has come back negative except protein in the csf. I have been tested for lyme multiple times as I live in a tick endemic area and this has come back negative. I have some tingling and burning to the distal third of the tongue but no loss of taste. It makes sense to me as most of the cranial nerves are considered part of the peripheral nervous system and are inflamed.

    November 1, 2020 at 8:47 am

    Thank you for the tips. I am really struggling with the unpredictability of the disease.

    Walter I was wondering what curcuminoid supplement you use and the topical chinese oil? I have tried topical cbd products with minimal relieve. I think the brand that has worked the best so far for me is Charlottes web. Topical capsaicin to me feet seemed to make things worse.
    I really wish I could get some sleep but I have two young children ages 5 and almost 2 and it has been really hard. I have been contemplating the cold showers but I was concerned about passing out due to my autonomic nervous system involvement. I think I may try this but work my way up slowly. It is interesting you mention exercise causing the disease to come on with vengeance. I was a runner before this disease and after my initial symptoms settled down and the dx was still unknown I ran a road race. Shortly after that I caught a mild cold and bam flared up and haven’t been the same since. At least with that flare up my neurologist promptly diagnosed me. I have been on ivig and then transitioned to sub q iv. Up and down on the prednisone and have tapered down. We have discussed additional treatments but with coronavirus we decided to hold off for now. Overall I am in a better place then I was last year when hospitalized, but nowhere back to who I was. Still hoping to get there some day, but also realize I may not. It has been hard letting go of who I was, but just trying to focus on what I can do instead of what I can’t

    February 12, 2020 at 9:10 am

    Sorry to hear about you sister’s pain and symptoms. I love, love loved coffee and caffeine before this illness and have cut way back on my caffeine intake which I think has helped with some of my neuropathic symptoms and also my autonomic symptoms. I still have some caffeine and add cinnamon instead of sugar to my coffee. Has she tried any topical treatments? I have used cryoderm in the past which contains arnica and boswelia which are natural herbs. This does seem to offer some temporary relief. I haven’t tried any cbd oil but have used topical cbd in the past. Before I was sick as I was a runner. I didn’t find that the topical CBD helped and was super expensive. Has she talked to her neurologist about a magnesium supplement or even warm baths with epsom salts? This might help with the leg tightness and warm baths are proven to help with sleep. Just a thought? Accupuncture seems to have helped me some as well. It doesn’t make my symptoms go away but does offer some temporary relief, and I seem to sleep really good the nights I receive the accupuncture.

    February 12, 2020 at 8:38 am

    I would say that this disease has made me rethink life in general, who I am, and my priorities. Since getting sick my mantra has been to life for today and fight for tomorrow. Prior to getting ill I would always be looking into the future which I do much, much less. I now take it minute by minute and day by day. I appreciate the small things much more and don’t worry about what the future holds. So I guess I would say this has been an epiphany for me as well.

    February 11, 2020 at 10:51 am

    I like most have tried to incorporate natural supplements. I started alpha lipoic acid daily for nerve repair. Not sure if it has helped, and it does seem to give my urine the asparagus type smell. I have also added omega 3 fatty acids, but you need to be a little careful with these as they do cause the blood to thin and cause bruising if you are getting frequent iv’s for your treatments. Others have seemed to recommend tumeric which I have also incorporated and I have started adding raw ginger. Just started accupuncture which seems to help with some of the facial neuropathy.
    I have also tried Lions mane mushroom in the past when I first had symptoms but have been reluctant to use this supplement recently as I am on high doses of steroids. Not sure if there is a risk or not. Lions mane does come in a supplement but you can also buy mushroooms and they are tasty.
    Other than that I think vitamin b12, and vitamin d may be something to consider.
    Also started adding cinnamon to my coffee in the morning, which was an adjustment but I am getting use to the taste. Hope that helps

    February 1, 2020 at 12:11 pm


    I agree the ivig is an inconvenience, as I get it over 2 days every 2 weeks. I have only had 4 or 5 outpatient infusions and I am still unsure if it is really working but the neurologist says it will take time and to be patient. He has stated that the hope is the disease burns itself out while getting the IVIG and steroids and that the body repairs itself slowly over time. I have been approved for 6 months but he wants to give it a year providing things don’t go in the wrong direction. Not sure if the area you live in offers in home infusion? I have a home health nurse who comes to my house and retreat to the basement for about 4hours but at least it is at home.

    My neurologist has not mentioned Cellcept but has already brought up rituxan. I think he is thinking further out which I really appreciate if the IVIG and prednisone don’t work. Both cellcept and rituxan scare me as I have two young children at home ages 4 and 1 who are always sick with some illness.

    As if this illness isn’t enough to deal with my insurance has denied my oncologists request and peer to peer review for the ct scans of my chest, abdomen and pelvis looking for cancer.They deem it not medically necessary. I can’t imagine they would cover the rituxan or the cellcept if I have to go that route.

    January 31, 2020 at 8:18 am

    Thanks for the input, and the articles. I initially responded to iv steroids when I was first hospitalized. The third hospitalization steroids didn’t help as much so next came the ivig. Not really sure how the ivig is supposed to work, but on the days I get it I feel awful, and then the same for the next few days. I describe to family and friends as that you could wipe the floor with me. 2-3 days after the ivig I feel a little better, walking a little better, and usually 2-3 days before the next infusion gait is not that great.

    Not sure how others respond to the ivig but I guess everyone is different?

    Weight loss has been an issue for me as well. Lost 14 pounds first hospitalization, regained it back. When was re-hopitalized in October lost 10 pounds and have had a hard time regaining it back. Having a hard time maintaining my weight considering my ravenous appetite from the steroids. Usually by now with the holidays last month I would have put on 10 pounds but actually lost an extra few pounds. I guess if there is any silver lining with this at least the cidp helped keep the holiday weight off.

    January 30, 2020 at 8:45 am

    As a DOT certified examiner I would have to agree with the Dr. Peripheral neuropathy can be disqualifying depending on the extent and examination findings. That being said if the examiner feels that the neuropathy is not limiting he or she can request clearance from the treating specialist and also may require that you have a skills performance evaluation