I need some positivity
November 28, 2017 at 2:40 pm
I am newly diagnosed with CIDP a few weeks ago. I have to wait until 12/4 for an appointment with my neurologist to discuss treatment options.
In the meantime I can barely walk. I’m using a walker which is increasingly becoming more difficult to use. I can’t sit in a chair without someone helping me up.
I’m becoming depressed thinking I went from an active, healthy person to this. Anybody else have depression?
November 28, 2017 at 4:23 pm
I’ve got a very non-supportive spouse who, even in the face of all this crap, thinks that I just am overblowing it all. It sucks how hard it is for people to understand this disease. The good news is, since you are newly diagnosed, there seem to be a ton of treatment options and while it may take some time, you’ll find the one that works for you. Get better soon.
November 29, 2017 at 12:06 am
April Nicole, hang in there. Good news is that treatment of CIDP is effective in a majority of cases and many people regain some or all of their function. I know this is a very difficult time for you. Have you asked your primary care provider about the depression? Perhaps you could seek some counseling? I know you’re not mobile right now, but there are even phone/online options. And if your symptoms worsen before 12/4 and your neuro can’t get you in, I know many patients go to the ER and get treatment right away inpatient from the on-call neuro. If you’re stable, waiting for Monday may be your best bet. Good luck!
November 29, 2017 at 9:00 pm
It’s been a year since I was diagnosed with CIDP. With a new doctor starting in May, I’ve been on bi-weekly treatments of IVIg.
Most people get a quick boost from IVIg. So it will allow you more mobility, rather quickly.
I’d say a year later, I’m 80% of my former self. I work 48 hours a week, cut the grass and am able to play golf again ( not as well, but I’m playing!).
That said, I’m exhausted at the end of the work day and my lower legs still feel a bit weak and my feet just hurt all the time. So things may not turn out perfect, but recovery can take years.
The point being is that once you begin treatment things will likely improve quickly and in the long run you can resume most of your activities.
Good luck. Keep us informed.
December 1, 2017 at 3:28 pm
Thanks everyone for replying. I have to say I have a very supportive husband and family, for that I am blessed.
I see the neurologist on Monday to talk about treatment options and I will update. Again, thank you, it helps when others share their experiences.
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