• April 18, 2017 at 10:12 pm

      I’m 17 with cidp and need to know is there any hope for a job???

    • April 18, 2017 at 11:30 pm

      Your skills show through in your writing! Many companies are seeking workers who can think on their own and communicate well through the written word. In today’s job market, there are many work-at-home jobs or a mix of full time/part time work-at-home jobs. You could compose articles; provide customer service support, do website development, do programming, and many, many other jobs. You could even start your own business!

      What kind of things do you like to do? What are your hobbies? What subjects do you excel in?

      I suggest that you look into getting a Myers-Briggs assessment. This is not a test; there are no right or wrong answers. The assessment measures tendencies and personality profiles. There are sixteen different personality types and each of us tends to have 3-4 dominant ones. There is a well documented set of jobs to look into for each combination of personality types.

      Many universities offer a Myers-Briggs evaluation through their Psychology Department. If you take the short versions that are available on-line, you will do yourself an injustice. The professional versions have eighty or more questions to help assure results that are more accurate.

      CIDP can limit some job choices. I had my own business doing management consulting. That job required a great deal of travel in and out of the country. CIDP has left me wheelchair bound, so I can’t do the travel anymore and had to give up my business. I am now CEO of a non-profit and also do website design and support. You are probably even more flexible and adaptable than I am. You just need to find some career choices that are achievable for you. The Myers-Briggs can help you choose.

      Best wishes for your future success!

    • April 18, 2017 at 11:49 pm

      Here is a survey about the ability to work for CIDP patients:–ability-to-work.html

    • GH
      April 19, 2017 at 11:43 pm

      Sure there is, but you haven’t described your history and current condition. There is much variation among CIDP cases. It’s a matter of finding the right fit to your skills and abilities.

    • April 23, 2017 at 9:58 am

      Hi GH, sorry to not be offering Kaylee any suggestions but was hoping to connect with you on your history. I find it challenging to maneuver through these forums at times. I was curious how many ivig treatments you had before you or your neuro decided they weren’t doing much. I am just past my 7th treatment having been diagnosed in early Jan. I am on neuro #2 sense my first one changed practices. Newest guy did in office tests and said I was doing great but I still have nerve activity in lower legs and some numbness in feet. Strength, balance still good but notice no real bump from my every 2 week ivig. Was on Gralise (2400 mgs) daily but was just prescribed Lyrica to see if it will help with nerve pain. Have notice more soreness in groin upper thigh area where my cidp first presented itself. No longer nerve action in that area but muscle soreness. I am still very active at 61 with daily work (office job), yard work, home maintenance. Fell better when active. Just wondering if PH would be better for me. Hope you see this and appreciate your insight Fellowcidpguy (Jeff in Houston)

    • GH
      April 23, 2017 at 2:58 pm

      fellow, I had one loading dose of IvIg, a five-day regimen, then was sent to rehab. At that point I was classified as GBS. My strength continued to fall, however, so I was soon back in hospital. I was sent to the ICU and given another five-day treatment. Then I was sent to the step-down unit and from there to skilled nursing, with attempted rehab in both places. But I continued to decline and contracted pneumonia. Back to hospital ASAP. Now I was in the ICU again and quadriplegic. I was reclassified as CIDP because my decline had been too long for GBS. I had no more IvIg after that.

      After recovering from pneumonia, I was given plasma exchange — nine treatments — after which my strength started to return. I was also put on steroids and a long-term immune suppressant. Those drugs, along with physical therapy, were my only treatment after leaving hospital.

    • GH
      April 23, 2017 at 3:01 pm

      By the way, unusual nerve sensations and numbness do not mean that you are relapsing. I have permanent residuals which include those symptoms. The only thing that matters is that my strength holds up.

    • April 24, 2017 at 11:03 pm

      Thanks for the reply GH. Had no idea about your history but sounds like the PE and cellcept did wonders for you and that you are doing well given where you were in the beginning. I have just started on Lyrica to hopefully tame the Hebbie jebbies of my nerves but my strength and balance have held up fine after 5 months of Ivig but I know I have a long road ahead. Need to stay positive in this battle. Look forward to more of your insights. fellowcidpguy.