KHS730

Your Replies

  • June 5, 2009 at 9:46 am

    Hi Linda,

    Is it possible that you’re just not getting enough potassium?

    Insufficient levels of potassium will cause the leg cramps you’ve been experiencing. Some meds tend to “leach” potassium out of your system rapidly. This is exactly the case with my wife, so she has to take potassium supplements.

    Just a thought…

    God bless!

    Kevin (a.k.a. KHS730)

    June 5, 2009 at 9:31 am

    Hi Folks!

    Sorry for the delay in replying, but I’ve had a rough couple of days with my condition deteriorating so rapidly. I seem to have bounced back a little this morning, so I thought I’d take the opportunity to keep everyone on this forum informed.

    After contacting the NC Dept. of Insurance, they pointed me toward the NC Health Insurance High Risk Pool entitled “Inclusive Health”.

    They cover high risk individuals with pre-existing conditions for an affordable cost. The only problem is you cannot have insurance, be able to acquire insurance at your work or can’t afford the premiums offered by a company to cover your condition.

    Their website is: [url]www.inclusivehealth.org[/url]

    I wrote them a quick note explaining my situation, and they replied that they think they can assist me. They just want me to call them on their toll-free number so that they can get all of the information they need.

    I’m going to call them in just a little while… I’ll keep everyone posted as matters progress.

    God bless everyone on this forum, and remember to keep paying it forward!

    Kevin (a.k.a. KHS730)

    June 3, 2009 at 5:43 pm

    Hi Dave, welcome to the site! I too am a relatively new member of this forum.

    I’ve had CIDP for the past 10 years and have NEVER passed out due to my neurological condition, so I strongly doubt that your CIDP is the root cause.

    Nor would I tend to suspect that it’s your I.V.I.G., but since it’s a blood byproduct one can never be absolutely certain. I know that I.V.I.G. has been a [U][I]HUGE[/I][/U] [U][I]BLESSING[/I][/U] for me. That’s not to say that it doesn’t affect people in ways that it doesn’t affect others. There’s a long list of warnings & contra-indications associated with I.V.I.G., so you probably should discuss your entire medical profile at length with your neuro if you haven’t already done so.

    Now, I do strongly agree with LindaH that your other meds might be causing a sudden drop in your blood pressure. (Are you still driving?) And her suggestion to make sure you’re eating a healthy, balanced diet is certainly sound advice. Also, and this is VERY IMPORTANT… listen to your body when your CIDP causes you to become fatigued. GET MAXIMUM REST! With CIDP, you have to PACE YOURSELF! Ask your doc for a sleeping aid if you need it. Always remember, your body can only repair itself while you’re sound asleep.

    It certainly isn’t fun having CIDP, in fact, it’s a fairly rotten deal. But it can be managed. No one deserves having this condition, but you just have to play the hand that you’re dealt in life. What other choice is there?

    On a personal note… When I get down about having this lousy condition, I try to remember that there are many, many others out there who have the disease I was first diagnosed with; ALS. I’m certain they would ABSOLUTELY LOVE having a condition as manageable as CIDP. ALS is otherwise known as Lou Gehrig’s Disease, and typical life expectancy is only 2 to 5 years. A slow, agonizing death typically results from suffocation. (Stephen Hawking is the RAREST of exceptions, having survived as long as he has).

    So you see, as bad as it is… and it is bad, but it could be much worst. I’ll be praying for you and all the others on this forum who have this dreadful condition. I pray that a real cure will be found soon, but MUCH MORE research is badly needed! Since CIDP is so rare, it’s just not considered a priority for researchers.

    In conclusion, try to keep your chin up, and remember to keep paying it forward!

    Best Regards,

    Kevin (a.k.a. KHS730)

    June 2, 2009 at 2:33 am

    Thank you, everyone for your kind words of encouragement and advice!

    I’m truly touched by those of you who read my post and had enough concern in your heart to respond with your wonderful, helpful suggestions!

    Based on what I’ve found out thus far, it looks like my best option might be to contact my state’s insurance program, NCSHIIP. My plan is to initiate my first contact with that agency after I return home from my next Solumederol infusion tomorrow morning.

    If I learn anything from those folks that can benefit others in this group who are suffering under similar circumstances, I’ll certainly post the information ASAP!

    God bless each of you, and remember to keep paying it forward!

    Kevin (a.k.a. KHS730)