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Living with Polyneuropathy CIDP, GBS, & CMT

Second Opinion?

#1

I was diagnosed 2 years ago with CIDP and have been receiving IVIG (Gamunex) and taking Gabapentin for about 20 months now. Lately I feel much worse than I used to to. More pain and more numbness and SO VERY TIRED. During my most recent doctors visit I mentioned all this to my doctor and she gave me the impression that fatigue (and dizziness) are not normally part of CIDP. Anything I have ever read says that fatigue is a symptom. She ordered MRI’s of my head and C-spine and a lot of blood work. She looked puzzled while she was talking to me. I was very emotional (I am not usually) because of how bad I have been feeling and my quality of life has been worse than usual. I am considering a second opinion. I’m wondering if my doctor truly understands CIDP… or maybe I don’t. Any thoughts would be welcome. I don’t feel very supported at the moment and I am struggling.
Thank you

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#2

Hi Gma2Austin,
I can very much relate to what you’ve been going thru w/your CIDP diagnosis/symptoms, your IVIG Tx and w/your Dr., but I don’t have time right now to respond properly to you, so I’ll need to respond later tonite. Btw, I’m in the San Francisco area and have Kaiser Healthplan.

#3

Thank you! I appreciate your help.

#4

I also had what I considered a CIDP relapse years after - was first diagnosed 12/14. The tiredness to me is part of it all. Keep your head up and change your lifestyle as much as you can. I’ve found that controlling what I ingest (diet) and exercise helps me tremendously. I also try to sleep a minimum of 8-10 hours per night - when I miss out - my symptoms can arise.

#5

Hi there,
I was diagnosed just over a year ago and fatigue is a huge part of my symptoms so I understand you completely. A second opinion never hurts. You think maybe she was thinking MS with all the testing? As far as understanding CIDP is concerned, I am struggling with that as well. I am so new to all this. Lately I feel way more tired and my legs are much weaker, not more painful, just really weak. And I can’t seem to concentrate on anything. Do you think this is a flare up?

#6

Hi, so sorry to hear. I have some definitive recommendations for you…

  1. Check and be sure the neurologist treating you treats neuromuscular health and illness problems. There are so many neurology specialities, probably over 25, maybe more. If not in this speciality, consider another opinion from someone who is.
  2. I too have enormous amounts of fatigue. This is what this illness is. It destroys the myelin surrounding your nerves. It takes enormous amounts of rest and sleep to repair myelin…thus exhaustion. Read some medical abstracts online to fully understand. Its all available online.
  3. I too suffer from dizziness. I take neurotin for my CIDP which started in December 2017. Gabapentin is even stronger than neurotin and does indeed cause dizziness. You will find that the doctors are more interested in doping you up with the drugs than spending time to review what is causing your problems or why you are worse. Further, these meds are so so strong that they knock you out very quickly unless you have coffee to counteract the drugging. Discuss medication with your doctor, options, doses, etc. You will get some answers then and demand answers. Dont let them walk out the door without answering your questions. Dont leave if they leave the exam room. Make a list of your questions in advance and be prepared for your appointment. If they refuse to discuss, go elsewhere. That is your answer when they refuse to discuss.
    Hope this helps, Anne
#7

Hey Gma,
The fatigue is very real. My fatigue is so great I feel like I have flu like symptoms when it hits and it hits me almost daily. I have read many posts on this blog that would support you over your doctor.
I went to the GBS/CIPD Symposium in San Diego CA in November and they had a dr speak directly to the fatigue issue and are discovering it as a symptom although they don’t know the cause. My neurologist was not convinced about my fatigue at first wither, but informed me in March that she is seeing fatigue Is a common issue with those with CIDP. I think with some doctors they live by; “if it’s not in the textbook then it’s not real.”
But when you read 100’s of posts on this blog like I have and experience it like you and I have, you know it’s real. Sometimes I can hardly roll over in bed bc I’m so fatigued.
I have also been to a few local GBS/CIDP meetings in MI and everyone I have talked to is dealing with some sort of fatigue.
A second opinion is always helpful. Although, besides rest, I don’t know if there is much you can do about it.
Take care and I hope you find someone with more experience dealing with CIDP.
Andrew

#8

I wanted to say that I am tired most of the time with CIDP, but I also have fibromalgia and other autoimmune problems. Please do get another opinion because every person has different symptoms, but I am sure being tired would be a common problem. Hope you are able to get some relief. I did not take gabapentin for very long as it had some rather bad side effects on me. I have been on Lyrica for about a year, as well as the IVIG. I recently started taking the oral Cellcept which may replace the IVIG. I can tell a big difference, but I still have periods of more pain and numbness in my foot than at other times. God bless you as you continue to deal with this. I find having a positive attitude, setting goals, enjoying music, pets, being around family, friends, and children has helped me to live with this illness.

#9

I too experienced fatigue while getting IG infusions to treat CIDP. Red Bull was and is my friend, but not a lot of help… at some point you can try different treatments than just IG. You need a pain management doctor right away! Neurologist will not ever take care of you pain! You must get a pain management doctor.
You need a support group! You must reach outward for help and do not settle for medical doctor, if you are not feeling 100% confident. When you have accomplished something on these first two suggestions I’m happy to answer more. A Stephen Ministry program might help you through a church. Counselors for chronic pain sufferers. The GBS/CIDP international society is an excellent reference for finding medical centers of excellence for great care options.
Please have faith that you can be better physically than you are right now. You can feel better than this! You can be more functional or better mentally than you are right now. Today does not equal your tomorrows. Please seek out a pain management doctor immediately! Please seek alternative medical opinions to get medical care you have greater confidence in.
I am encouraged by your doctor’s aggressive testing to seek additional answers and not taking an easier way out. Is this your neurologist ordering these additional testing or your general practitioner?

#10

I have CIDP as well and recently had a flare up worse than ever before. I have numbness in hands and feet, face, and my balance is poor. Fatigue yes! It us so helpful to hear this discussion and Williamscotts suggestions are always right on and helpful. I am returning to the USA tomorrow night and will have 5 straight days of IVIG when I return. I am considering cell cept as well. I just am nervous about something that suppresses my immune system. Take good care. Rest when you are tired. I find I need to rest at inopportune times and can be frustrated at times. I also find I get irritable when tired.

#11

You are right Fatigue is a big side effect with CIDP. I am going on 4 years and Fatigue, and Pain are my biggest setbacks. I get IVIG 50 grams weekly. Please see a CIDP specialist. I recall everything your going through. Your doctor has no idea what you are going through. But a Muscle and Nerve specialist sees your symptoms all the and will treat it with the right gram dosage your body needs. Stay with this site and keep asking questions we all have CIDP and live every second of our life with it. It’s not you what you are feeling is the norm for this condition. Your in my prayers please feel free to ask any questions. Jutty 1957.

#12

I want to reiterate what someone side on change of lifestyle. Very important. What has help me is a high protein diet, watch the sugar. Swimming and riding a recumbent bicycle. Also Scripture, music, humor, and socializing with others anything to distract what you’re going through. Peace be with you

#13

Thank you so much Anne! This was very helpful. I have one question. How do you check that the neurlolgist treat neuromuscular health? Where would I find that information.

I appreciate your help.

#14

Thank you for your reply. May I ask what type of foods you found helpful. This is something I can work on.
I appreciate your help!

#15

Thank you!

#16

Thank you for your reply. It’s so helpful to know I am not alone and not crazy either!

#17

It’s my neurologist that is ordering the tests. She is the first doctor in more than two years that actually listened to me. Lately she is giving me the impression that she doesn’t understand my worsening symptoms. Like the IVIG should be the cure and I should be my old self. I’d like nothing better but I honestly struggle with pain, numbness and fatigue. It’s depressing. I plan to try all of your suggestions. THANK YOU!

#18

Thank you! I appreciate your encouraging words. I am still trying to work full time so that makes resting hard. I work 45 to 50 hours a week. I have not choice right now. Thank you for listening. :slight_smile:

#19

Hi there…
To find out if your neurogist is a neuromuscular specialist, go online and look at your doctor’s website. Look what neurological illnesses he treats too. After that. Call the doctors office and ask his speciality to confirm that info. If he does not specialize or does not treat neuromuscular then that is the problem. Pretend you are a potential new patient. Make sure they answer those questions.
Next, call your medical insurance company and ask they send you a list of neurologists within 20, 30, or 50 miles…depending on how far you live from a big city. Then call the offices and ask what their neurology speciality is. If your doctor is not a specialist neuromuscular. Call every other office in your network until you find one. If do not find one within 50 miles, call back your insurance company, inform them of this, and then demand they accept a local doctor with this speciality. They must provide this speciality without like 50 to 60 miles if you have a decent insurance policy. Best wishes, Anne

#20

I try to eat very simple meals. Very few ingredients. For protein - grilled chicken grilled shrimp salt pepper garlic. A lot of vegetables. A lot of smoothies. Things that are easily digestible and full of nutrients. I drink tea - not coffee - no sugar - I add honey. Nothing with a lot of preservatives - white bread, snack food, etc. - things that would survive the Armageddon.