Through out my recovery I kept repeating my Neuros words. That GBS was temporary along with the symptoms. The Walker and cane have long been kept away. I was able to wear my wedding ring again without my finger swelling up. (more than once my wife suggested making it into earrings). Now I only have symptoms in my feet, worse when I only get 2 hours sleep. (only did that the one time) Now my health advisor says I should start cardio exercise. I’m doing 20 minutes on a elliptic cycle and I hope to get it up to 40 minutes. Got to work of this gut.

Don’t give up…

I also get very tired. I also have swelling in my legs and have to lie on couch with feet in the air to help reduce pain and swelling.

What about meds? I can’t function after IVIG and I go once a month so for the next several days I am in bed.

Can’t type because of pain in hands.

Can’t sit long pain in back.

Make sure you write down every little pain or ache.

Good luck with the appeal.

Lori,

You know your body best and if you feel there is something wrong keep searching for answers wherever you can.

Not all doctors know about GBS and CIDP even the specialists.

Don’t give up…keep looking for a doctor that will help you.

Rhonda from Canada

hey ken,

you sound so down– i’m so sorry. i know your fear and your pain…

there are always options–
if you feel like talking, let me know. i’m pretty tired now, but morning is soon.

alice

Amy:

Sorry to hear about what you are going thru… I hope you don’t sell your recovery short… Have you had afo’s before this relapse? And don’t they have any treatment plan for you? Hope others can be of more help… Remember there is always hope.. Don’t give up! deanop

Jody,
I know how frustrating getting the proper treatments can be, but you must persevere & fight this illness. If I remember right, you have not even had any IVIG infusions? You might find that you can become almost as good as new again. CIDP can get very ugly, trust me, you don’t want to let it just run it’s course. I was almost totally paralyzed for 2 1/2 years, & that was with weekly IVIG, PP, & 1,000 mg of weekly solumedrol. Get the treatment you need, no matter what they put you through.

Hi and welcome,

Your symptoms can be many things. I do not have GBS or CIDP, but this forum has been my family of help during the time when I was undiagnosed. I just love them all 🙂 My symptoms turned out to be hypothyroidism/Hasmimoto’s (the autoimmune variant) with B12 vitamin anaemia.

When I first went to hospital, I was examined for GBS, MS, Borrelia, celiac and a lot of other things. I had CT, MRI, blood tests, emg test, etc. The doctors did not find out anything and sent me home not being able to walk on numb, aching, sleepy, tingly legs with weaker and weaker muscles. This was all over my body. Aching muscles everywhere – pain moving around. Not being able to distinguish hot from cold in certain spots on the skin. Dropping things from my hands, not being able to carry (had to use backpack). Tongue feeling larger, hair falling out creating small nests when bathing, extreme fatigue, memory and concentration problems, depression etc.

Thyroid problems are common when being pregnant and right after birth, if you have family with thyroid or autoimmune diseases, if you are in your fourties or older, etc. – look this thyroid thing up on the internet.

You should be checked for the following too by blood tests:
diabetes, Thyroid: TSH, T4, T4 free, T3, T3 free, TPO antibodies, TRAS antibodies, deficiency in B12 vitamin also called cobalamin, iron deficiency, ferritin, transferritin, D vitamin, Calcium, Potassium and what others in this forum recommend.

Thyroid problems are often accompagnied by other co-morbid conditions, and thyroid problems can be a bit difficult to get diagnosed as well.

I hope that you find out what is wrong with you.

All my good wishes to you !

There were times when I was ready to give up, and am I glad I did not. I was diagnosed with CIDP 2 1/4 years ago, went down hill for another 8 months and ended up in bed, not being able to move anything, totally numb. Things turned around very slowly, now I am walking again, not pretty, but walking and have been driving for 6 months. Arms and hands now totally normal, upper legs normal but ankles and feet still have a way to go. I can tell you, support from the family was the turn-around at the lowest times. Healing things takes lots of time and a lot of hard work. I can’t even try to know what my family went through during the darkest periods, but their support was the difference for me, although it may not have been very apparent.

I hope this helps a bit. Good luck.

Since my GBS onset in April of 1998, although otherwise making a complete recovery, I have had considerable problems with my left foot. I went to 2 podiatrists , who gave me orthotics and sent me on my way. The orthotics were only a temporary fix. The problem is that I am walking on the side of my foot. Now I have developed arthritis in the foot, which compounds the problem. I finally went to an orthopaedic surgeon and will be having surgery next month to realign my foot and remove the arthritis. Although the thought of surgery is a scary one, for the first time since my GBS onset, I have hope that I will be able to regain at least some normalcy to my life.

The point to this is that if you are not getting relief with your current providers, keep trying until you find someone who can help. If that means going to a neuro, it is certainly worth pursuing.

Good luck.

Tim Ross
Lansing, Michigan