Hello from Houston
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February 21, 2017 at 10:18 pm
Hello to those trying to adjust to life with CIDP. My name s Jeff and I live in Houston. I am about 2 1/2 months into my experience. Was wondering if there are others like me and my situation as I am curious on how it is going for me. I was diagnosed in early January 2017 after waking up in early December 2016 with unusual upper leg pain in both legs. After a few weeks of frequent trips to my primary doc, I started having some tingling in my feet. Doc gave me low dose of gabapentin and told me I needed to see a neurologist. I was lucky to get in to see one quickly and after nerve conduction tests followed by a lumbar puncture I was now a member of the cidp community. The neuro told me the good news was by getting an early diagnosis the treatment would slow, stop and reverse the disease. That sounded great and so far I have had 3 ivig infusions 2 of which were the loading doses back to back days, now once every 2 weeks. Felt better after the loading doses but now not sure how it is going. My upper thighs are still ground zero for me and they ache where the big nerves are located. I am on 1800 mgs of gralise (gabapentin) daily. My nerve pain is minimal, more irritating than painful, which is much better than when I felt like I was being tazered by my own nerves. Wondering if my symptoms of sometimes a burning feeling and most of the time sore thigh muscles is common given my treatment to date. I seem to be struggling with my own mind as to whether the ivig is working and am I improving. The mental game is a struggle sometimes but I feel fortunate in that I still have good strength, go to work everyday and have only had minor nerve tingling in my feet or hands. I know my age is not n my favor (soon to be 61) but I have an amazing wife to help me through this journey no matter where it leads. If there is anyone in a like spot as me I would like to hear from you and how you are doing. For all others, may you have better good days than bad and always count your blessings, especially when the “why me” starts to creep in. Sorry to go on so much. Jeff in Houston
Jeff in Houston
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February 22, 2017 at 8:36 am
Hi Jeff, I also like you was lucky enough to be diagnosed with CIDP within 3 months of the first onset of symptoms. I started IVIG right away and have been on it now for 5 years. I am currently 52. I had some pain in the beginning and over time it has subsided. My neurologist said that it could have been the initial damage that was done to my nerves and it would take some time for the nerves to heal. Now, 5 years out I am able to push my IVIG infusions out to every 5 weeks and I don’t have any major symptoms from my CIDP as long as I get my infusion. Sometimes the tingling in my hands returns or I start to drop small items, calve cramps at night and fatigue in my legs happens close to my infusion date but once I get the infusion I am good to go again. I hope for you that once you start to receive regular IVIG your nerves will start to heal and you will start to feel like your old self. I have not changed anything at all in my life. I am a mom of a teenager, I work long 10 hour days, and I am very active on the weekends. I do notice a little bit more fatigue in my legs and have to take certain things slower such as biking but it could also be just age. So relax a bit and try not to stress too much (stress makes my symptoms worse) and let your body heal. You are lucky to have started treatment so early and probably have only minor damage to your nerves. Good luck and keep us updated as to how you do.
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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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February 22, 2017 at 12:10 pm
I just put in full first week at work after being off for 7 weeks. I guess I hadn’t realized how deeply CIDP had atrophied my muscles from my knees on down. I’m worn out after standing all day. Plus, the neuropathy hasn’t healed yet in my feet, so they are stiff at the end of my shift as well.
From reading the various accounts from our fellow suffers, it just seems everyone heals at different rates and my neurologist last Friday, after (can’t remember the name of it) the electrical test, that it might be another 60 days or more before we find out the true extent of what heals.
I’m happy to be walking unaided, but I definitely want to heal a lot more than this. Then again, some of my weakness I’m putting towards the high does of steroids on still on for at least the next couple of months. It still throws me for a loop each day. And like the CIDP effects, the steroid side effects are new and different each and every day! : )
So I think, if others are like me, you wonder a bit, when your pains and symptoms change, “Is the CIDP coming back?” or am I just tired?
I’m always interested in seeing how others feel, how they react to exertion.
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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
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February 22, 2017 at 9:50 pm
Its interesting how different neurologist treat CIDP. My course was prednisone, but I got worse. The doc sent me to hospital where I received 5 days of IVIG treatment which turned things around, all the while still taking 60mg of prednisone. Since my release, on January 6th, I’ve been on 40mg of prednisone, which will last at that dose for 2 more months, at which time he said we would taper it down over the course of 2 more additional months. I haven’t had IVIG since, though he said if things turn south, it would be used to once again turn things around.
Not sure what to expect in long term healing. My chiropractor said I complained of numbness in hands and feet beginning mid-August(but I had been feeling fatigued, with back pain for months earlier). By mid-September I wasn’t better and said go see my GP. He did blood tests which showed a crashed B-12 level. Low B-12 can cause numb hands and feet. 3 weeks later, another blood test, B-12 levels were back to normal, but my neuropathy was worse. Finally late October he sent to the neurologist. A week of tests were negative and by then it was early/mid November when I had a lumbar puncture which confirmed CIDP. So he put me on 60mg of predisone and said give it a month to improve. Unfortunately I got worse.
So the question is, how much irreversible damage was done in that period? He’s hopeful its minimal, but also cautioned that myelin repair only progresses at 1mm a day. Haven’t measured my legs, but that has to translate into 4-5-6-7 months!
I tried Gabapentin and was taking it up to last week, but it does absolutely nothing for me. I asked for some type of pain pill, but he doesn’t want to go the route. I’d sure like to! : ) I finish physical therapy next week and plan on taking the hospital up on a 60 day free membership for their gym.
If you’d like to get in touch, its ncc1701a “at” fuse.net
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February 23, 2017 at 8:38 am
Hi Jeff, this is Chirpybirdy. Yes, I did try prednisone as my first line of treatment while I was waiting to get approved for the IVIG. I hated it!!! I was in Florida on my vacation and the side effects were driving me crazy. I was agitated and short tempered. I also could not sleep a wink, would be up all night long. I remember calling my neurologist and telling her that I stopped all the pred. I could not take it. So she got me approved for my first infusion right after I got back from my vacation. I have been on IVIG as the only treatment for 5 years now. I have been lucky and don’t have any pain in my legs or feet so I do not need any pain medication. So far I have continued to respond really well to the IVIG. I have just pushed my monthly infusions out from every 4 weeks to every 5 weeks now and am not experiencing any problems. I hope to be able to push them out even further but am also afraid to try as I don’t want to start having problems. I am also nervous. I have been seeing a CIDP specialist at the U of MN now for many years. He just left the U so I have to start seeing a new neurologist… not happy as I really liked my current neurologist. I have met his colleague and he seems nice so hopefully it will be a good transition. I also take hight levels of B12 and D3 vitamins since being diagnosed. Was told that they can help.
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February 23, 2017 at 9:58 am
Hello there Jeff,
May name is Amarie and I am also right here in Houston. Symptoms began in June 2016 and by the end of July, I was in a wheelchair. I was diagnosed in Aug of 2015. I was on IVIG for 1 year and 3 months at 2 wks, 3 wks and 4 wk intervals. The infusions began in Sep 2015 and it was not until about January of 2015 that I truly felt a BIG difference. It was very slow and steady for me. I had to gradually change my activity level to match the progress of the healing. It’s easy to push the muscles too far. I would often feel as though I was relapsing but the EMG showed no further damage. Through the treatment I still had to struggle with pain, muscle fasciculations, numbness, tingling/stinging, etc. and even days to weeks of increased pain in my legs. It would come and go. I did regain strength and balance though. I was advised by the neuromuscular neurologist to “not panic” and that some of these residual symptoms will be transient. He wanted me to especially pay attention to my strength level. Sometimes it can be difficult because the pain, tightness and heaviness in my legs particularly can make me feel weaker but so far every time these symptoms have increased (whatever the duration), they have also decreased and I’ve felt better. In December of 2016 I received my last infusion. March 7th, will be 3 months off of IVIG. Needless to say, I’m concerned. I don’t want to relapse. I’m having to remain as calm as I can and coast through some of the increase in symptoms. I can still walk, drive and feel okay but I do feel as though I’ve lost some strength overall but I’m no longer getting the extra antibodies, etc from the IVIG so that is to be expected. I did have to stop working (at the age of 45) but I could no longer handle the all too frequent calling into work to tell them that I couldn’t make it in. I did manage to make it back to work in Oct 2015 and struggled with working til’ recently. I am just hoping that with much needed time away and more healing that I’ll not have as much pain or residual symptoms. I know every case and individual is different and we all experience CIDP in different ways but one thing is key and that is to communicate with your DR and be aware of your body. Eat and live as well as you can. It is wonderful that your wife is with you. It feels lonely when we are diagnosed with this and it is only rare when it is not us. There is a CIDP support group meeting in April (Houston Chapter of GBS|CIDP Foundation International , you can find them online and see if there is are tickets remaining). Take care Jeff,
Amarie -
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
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February 27, 2017 at 8:53 pm
Hello again Jeff,
My neuromuscular neurologist that I have used since 2015 is Dr. Aziz Shaibani 6624 Fannin, #1670 77030; 713.795.0033 and fax 713.796.9302 Email shaibani@bcm.edu . Dr. Jeffrey P. Gaitz, M.D. (Memorial Hermann) is the general neurologist by way of my PCP that referred me to Shaibani. He does require a referral, just so you know, because of his specialty. He is affiliated with Baylor.
I will be changing neurologists in May but it is because my insurance situation has changed.
I am sad to report that I think that I may be relapsing and have had to stop working but I’ve not lost hope. I may not be able to receive Ivig in the near future but I will just wait and see what is around the corner for me. I have faith in myself and my Drs.
I do hope that you enter into a stable holding pattern and the treatment works for you. On the subject of pain; I recently purchased an Icy Hot TENS unit. It does not take the pain away long term but when I need it the most it has been wonderful. I have excruciating low back and hip pain and it really interrupts the pain signals long enough for me to get some relief at the times I need it the most.
I really benefited from PT. I am considering it again if I start to have major difficulties again. I went for about 3 months and it helped me with balance, endurance, strength and gave me an idea of what to do at home also. If you get it approved; take advantage of it. You don’t need your muscles wasting away.
Ups and downs are expected with this disease and I am on the down-side right now but optimistic. Maybe we will run into each other at the meeting. All the best to you and yours.
Warmest regards,
Amarie
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