wishfulthinking
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September 7, 2015 at 9:30 pm
I feel so sad for you…untill you find the doctor who is going to have that aha moment, as I think I know what’s wrong with you. But they are far and few between. Try to find a neuromuscular specialist. I waited 5 months for one. But my neurologist could not diagnose me. Neither could anyone else.
September 2, 2015 at 12:27 amAnd I should mention I have cidp.
September 2, 2015 at 12:25 amBeen that way for me since onset of sept. 2014
September 2, 2015 at 12:20 amI know it’s hard, but your husband waited this far. Don’t want to screw this test up..might be his only chance.
September 1, 2015 at 12:08 am60 mg of prednisone stopped the progression dead in it’s track..been on it since January…I knew within 24 hrs. I went from almost going into a wheelchair to about 95% back to normal..it can’t hurt to try even a short course.Some people respond well, like I did..others didnt. .can’t hurt..best of luck to you both 🙂
August 31, 2015 at 10:20 amMention Cidp to whoever will listen… months in a neurologist office and no one seemed to mention it. They even tested me for seizures. And it wasn’t until I said something, did I get tested and then by then it was very severe and the damage has already been done. Even at that point they still left me without treatment. My GP started treating me, thank God. I won’t be walking if it wasn’t for her. Because it took 5 months to see a specialist. My GP decided to go forward and treat me. But it was the best thing for me. Need a good doctor in your corner.
August 31, 2015 at 9:05 amYes, I would definitely have them test your husband for Lyme disease. I myself tested negative.
August 31, 2015 at 12:41 amI had no pain..still don’t, but have heard of others that had. Nothing came fast..no one was in a hurry except me.I knew I was in trouble. Every day I feared waking up and being paralyzed.5 month wait before I saw a neuromuscular specialist. My GP was the one who started me on prednisone 7 months ago.the neurologist I was seeing wouldn’t treat without a definite diagnose..said it was over their heads..then 5 months wait..thank god she started treatment.I can only imagine how much damage could have happen in 7 months. Just started imuran and they are starting the insurance paperwork to try to get me ivig.. sounds very likely uour husband has Cidp.I felt like I was in a nightmare. I’m sure your husband feels the same..Finding a good doctor is the hardest part.
August 30, 2015 at 10:25 pmForgot to mention, I think mine was brought on by dental work done and they did not clean the root canal out correctly causing a massive infection in my face on my right side and that’s where my tingling and numbness started ,on my right side. But I also had a flu shot within that time frame, plus a stomach bug.. it could have been any one of those that triggered it. Good luck
August 30, 2015 at 10:20 pmThe only thing I can tell you, is that first they thought I had a virus, stroke, then dementia and maybe a brain tumor, etc.etc. It took quite a while before it was confirmed only by an EMG test. Because every other test came back negative I had massive blood work,MRI’s of my back it was crazy. The only thing that’s going to confirm is a spinal tap, EMG test or nerves biopsy. I don’t know of anything else that otherwise will tell them differently. But I will tell you one thing it was getting to the point after so many months that even my husband was starting to question me. An EMG test was my saving grace.
August 30, 2015 at 3:57 pmJust diagnosed after having symptoms for almost a year. Been on prednisone since December, just started azathioprine and we are talking about IVIG, 5 days loading dose and 6 months of treatment. Still working full time but barely holding on by my teeth. I’m a electrician,so sometimes it gets very physically demanding. Debating whether or not to apply for an FMLA?. Hoping for the best
