fellowcidpguy

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  • fellowcidpguy
    April 23, 2017 at 9:58 am

    Hi GH, sorry to not be offering Kaylee any suggestions but was hoping to connect with you on your history. I find it challenging to maneuver through these forums at times. I was curious how many ivig treatments you had before you or your neuro decided they weren’t doing much. I am just past my 7th treatment having been diagnosed in early Jan. I am on neuro #2 sense my first one changed practices. Newest guy did in office tests and said I was doing great but I still have nerve activity in lower legs and some numbness in feet. Strength, balance still good but notice no real bump from my every 2 week ivig. Was on Gralise (2400 mgs) daily but was just prescribed Lyrica to see if it will help with nerve pain. Have notice more soreness in groin upper thigh area where my cidp first presented itself. No longer nerve action in that area but muscle soreness. I am still very active at 61 with daily work (office job), yard work, home maintenance. Fell better when active. Just wondering if PH would be better for me. Hope you see this and appreciate your insight Fellowcidpguy (Jeff in Houston)

    fellowcidpguy
    March 29, 2017 at 9:39 pm

    Bryan, sorry to hear you are going through a down cycle. Glad you are approved for the IVIg treatments and hopefully you will rebound like you did in the fall. I was feeling like I was going backwards and then today I met with my new neurologist and after some strength and other tests he said I was doing extremely well and thinks the early diagnosis is really weighing in my favor. Couple of interesting points, he ordered an MRI to check my lower back to make sure that spinal stenosis (narrowing of the spinal column) isn’t in play in my case. But given that I have had no back pain whatsoever, he just wants to rule it out. Was surprised insurance approved it so quickly. I had a long list of questions for him and he took plenty of time with me to answer them. When I asked if the tingling nerve activity in my lower legs was my myelin being attacked, his reply was that it could be but that the same feeling can also be the nerves going through regeneration. I am going to go with that answer 🙂 So as I was preparing for the worse I left feeling a bit upbeat. The crazy mental challenge of this disease can be worse then the disease itself. Stay positive and let us know how you are doing. Jeff

    fellowcidpguy
    March 26, 2017 at 11:38 pm

    Hey Brian,

    I think I mentioned before that my treatment that started in early January was IVIG every 2 weeks but my spinal fluid showed the elevated protein levels. I am supposed to do the every 2 week infusions for 6 months before my first real evaluation, nerve conduction, strength tests, etc. I don’t notice too much difference after my infusions. I have had 6 so far. Only had a slight rash after my loading dose so no bad side effects for me. My mystery after all the research I have done is that I feel much better by being active versus rest, which seems to run contrary to what I have read about not overdoing it. Houston has a chapter meeting on Saturday and a physical therapist is the speaker so I will be curious to hear what they say as I have not initiated pt yet. I do the cidp exercises I found online but as I mentioned, I spend a lot of time working in the yard and spent 5 hours working outside today in a warm (high 80s) sunny day in Houston. My legs muscles do get sore and my nerve activity is from the knees down but the pain is low and very tolerable. Is it the IVIG? I hope so. I see my new neurologist this Wednesday and have a ton of questions for him but Tom is right in that everyone is different as to how this disease progresses and how they react to treatments. Best of luck in trying IVIG if routine treatments are in your future. Keep us up to date on your progress. Jeff

    fellowcidpguy
    March 22, 2017 at 2:46 pm

    Hey Brian, Jeff here. Wow, sounds like I wrote your post. I had been feeling pretty good after last ivig infusion, in fact had a couple of days of feeling next to normal only to be followed by days of increasing muscle pain and more nerve activity below the knees. Not nerve pain but just annoying nerve movement. The muscle weakness was the big shock. Having been without a doc for nearly 2 months I have relied on my infusion nurse to keep me grounded as the mind can really do a number on you. Luckily my jobs is mostly at a computer so not as taxing as yours but it just gets frustrating to be on this roller coaster. When I feel at my worst, a 59 mg. Tramadol seems to work on both muscle pain and calming the nerves. It lasts about 8 hours but enough for a good nights sleep and just a break from the mental wondering. I did get a new neurologist but not seeing him until mid-April. I have to keep telling myself that this is a long slow process so ups and downs seem pretty common but at least some light at the end of the tunnel. Thank you Jim for your constant insights. Bryan, ask your neuro about starting ivig treatments, couldn’t hurt if you get approved. I like following your journey as we started with this at about the same time. You also might try coconut oil as a carrier oil followed by Sombra cream for the thighs, knees, and calves. I apply morning and night with noticeable relief.

    fellowcidpguy
    March 6, 2017 at 7:03 pm

    Hey Bryan,

    Sorry to hear that you got sick, which possibly triggered the CIDP symptoms. Since I am new to this like you I am not sure the correlation. I do know that my infusion nurse originally asked me if I ever had sinus infections and I told her yes (who doesn’t living in Houston) and she said a side benefit of the ivig infusions was that they would keep me from getting sick. Of course, if it was food poisoning, probably could not have prevented that. Hope this is temporary for you and you go back to improving each day.

    Jeff

    fellowcidpguy
    February 27, 2017 at 5:47 pm

    Hi Amaris and fellow Houstoian, thanks for responding. I just signed up for my wife and I to attend the April Houston Chapter meeting. Sounds like you have done pretty well since being diagnosed, coming back from being in a wheel chair. Sounds like the ivig was just what you needed. I just finished my 4th infusion. Hard for me to tell how it is doing. I had the treatment on Friday and had very sore legs over the weekend, the worst they have been since it first started but much better today. Comes and goes. Do you mind if I ask who your neuro is? My guy was with a group called the Neurology Center on Main Street but he has decided to join Baylor and I haven’t been able to reach him for almost a month. I don’t mind following him to Baylor but feel he left me high and dry. So I may be shopping around. You mentioned leg tightness and that was one thing I do notice when my legs hurt the most, my skin seems extremely tight. I also have been trying skin products to help with the nerve pain (although it is more irritation than pain) and for the muscle pain. I think I stumbled on a good cream, called Sombra, a natural pain relieving cream. Kinda pricey but wow does it work on the sore muscles and lasts quite a while. I would rather do creams or gels than pain meds but I will take an occasional tramadol, only 50mg if needed. My infusion nurse thinks I am doing well and cautioned me that the 6 the month mark is the first real test marker. I am also wondering about physical therapy. Did you do any pt? Jeff

    fellowcidpguy
    February 22, 2017 at 6:55 pm

    Hi BryanF, thank you for responding to my plea. Our circumstances do sound somewhat comparable. I was curious if you are taking nerve medication like gabapentin or if because your neuro added steroids to your treatment plan, you maybe do not need to take the other drugs? Did your neuro explain why he or she thought adding the steroid to the infusions was recommended? I have many questions for my neuro but get this, he is currently MIA (missing in action). When I first saw him on a recommendation he indicated that he was going to be leaving his current center of practice and moving to one of the large schools/hospitals in our famed Medical Center here in Houston. I really liked him and owe him for the quick diagnosis and told him I would follow him to his new location. He sent an email to his patients with his new number and address and with a date of early Feb for starting at the new location. So I call to make an appt. and I am told he has not started yet and they were unsure when he would be starting??!! When I checked with his old place they said they thought he would be starting sometime later in March. As much as I liked the guy, how can you leave your patients hanging like that? With no way of getting in touch. It would be simple to go to a new neuro except for the fact that my insurance approved me for 6 months of treatment based on his diagnosis and his name is all over all the paperwork. I have no doubt that I would have to go back to my primary doc and start the process all over again. I have an infusion on Friday and I am going to check with the main nurse about the whole situation. Your leg pain sounds like it is more lower legs whereas mine is more the upper thighs especially where those large nerves run. I have no doubt that is where most of my damage is since that is where it all started. Great that you are back to work full time but does your job require you to be on your feet all day? Mine is a desk job with quite a bit of moving around and most of the time I feel better standing and moving versus sitting for long periods. Driving is the worst for me as I have a long commute from home to job so I have changed my hours to beat some of the horrible Houston traffic. Would like to keep up with your progress if interested. Maybe via email versus this forum? As I told cirpybirdy until someone has experienced this condition it is hard to explain it to people. Until later, Jeff

    fellowcidpguy
    February 22, 2017 at 6:26 pm

    Chirpybirdy, you are so sweet to reply to me with your story. Sounds like you have had a good outcome and also sounds like you have a good positive outlook. Who wouldn’t with a username of cirpybirdy :). I am curious if you have had any other treatment along with your infusions? Did or do you take any nerve drugs like gabapentin or gralise? I have a friend that had shingles and has to take gabapentin the rest of his life or the horrible itching comes back. Others on this thread were given a steroid to take while getting infusions. I did find that Houston has a local chapter of this organization so I will be attending their meetings and hopefully learn more from others with cidp. I am a true believer that until you can walk in my shoes…. so talking to others that have been down this road is extremely helpful for me. 10 hour days!! I used to do that but I need to slow down. Good luck with that teenager and I am going to channel your positive energy. Thanks again for your note. Until later, Jeff

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