just diagnosed on Wednesday –
March 10, 2017 at 6:08 pm
I started this journey to my diagnosis Dec 19th. I woke up one day and my feet and hands were numb. I was a bit freaked out and called my primary care Dr. Since then i have had MRI’s and Emg’s and lumbar puncture.
My primary care dr is not at all familiar with this disease. Two weeks ago before spinal i mentioned to my neurologist that I had been researching my symptoms and I thought CIDP was the only thing that fit.
right now i can barely walk, i use a cane and that is still not pretty 🙂 i am so weak, and almost fell when it was windy outside yesterday. I never thought the wind could make me lose my balance.
i am now waiting for approval from insurance company to start IVIG.
I went to my primary care dr today and asked her if i should be concerned about trying to raise my vitamin D level (its 21). She came back with a paper with guidelines for “normal” people taking supplements. Does anyone take extra vitamin D? Have suggestions on how i can – or website- i can forward to her?
March 11, 2017 at 10:27 am
My suggestion is to take your doctors’ advice rather than to advise your doctors. I took a couple of supplements when I was in recovery and I just asked my neurologist if it were ok. In your case she gave you guidelines, so follow them.
March 12, 2017 at 5:47 pm
Did the lumbar puncture find the protein associated with CIDP? If it did, the insurance company should okay the IVIG.
I was diagnosed in December. First I was given 80mg of Prednisone and told it would take a month for it work. Unfortunately, by January first I could barely walk and basically collapsed in the doctors office on Jan 2nd. He put me in the hospital immediately and started a 5 day regimen of IVIG. With a couple days I was back up walking with a cane.
After that, I’ve been in 60 mg of Prednisone, have lost the cane and I’d say I’m back to about 80% of normal.
While I’m trending in the right direction, the frustrating thing I’ve discovered about receiving the last 20% is there are ups and downs instead of a linear progression.
As to supplements, since I’m on steroids, I take a multi-vitamin to replace calcium, magnesium, Vit C, B, Zinc, Vit D, Folic acid, Biotin, and selenium. I eat a daily banana to replace potassium.
Hope some of this helps.
Like I said, the IVIG was a miracle drug for me. I truly thought I would never walk again the first day in the hospital. Now, I’m back to work, which while tiring, is good milestone to be at.
Best of luck and keep us posted.
March 13, 2017 at 12:46 pm
Yes lumbar puncture revealed the protein. That along with results from EMG confirmed CIDP..
Today is my first day not working, walking extremely difficult but possible with a cane. The weakness in my knees and ankles is depressing.
Right now I am only taking Gabapentin for pain.
I hope to hear from insurance company soon.
March 14, 2017 at 1:56 am
The neurologist who started me on Prednisone also prescribed Calcium and Vitamin D supplements because long-term use can cause a deficiency and I was confined to my bed for almost a year. You’re in the normal range, but if you’re really concerned about it, you can always buy OTC supplements.
March 14, 2017 at 11:46 pm
My Vitamin D was very low too. My primary put me on 50,000 mg once per week. I also took a large dosage every day. My blood test showed my Vit D at 32. So it works.
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