Hi Jo Jo! Hon! If you don’t stop overpushing yourself, you are going to end up on a death bed! PLEASE TAKE MY ADVICE! This numbness and tingling stuff is not going to go away and is going to end up getting worse! Since you are getting the Voice Mail stuff which I really hate! My best suggestion is to walk into the doctor’s office and ask the receptionist if you can talk with the nurse a minute and let them know what is going on! Tell them you are getting really scared and feel you need to be soon. Real soon! Maybe then you will get somewhere with this doctor! Please read this and take my advice! Your going to get worse if you don’t! I really care about you and hate to see this happening! Even tell your mother right now you concerns and tell her you need help! I think if you sat down with her and explained everything that is going on she might try to help you some! JoJo! You loved in here! We care! We really do! Hugs
Linda H

I did get IVIG (for a 1 1/2 year), but it only made my numbness go away but not the tingling, drop foot or made my limbs work any better. The IVIG wore off after having it in 6 years now the numbness is back. My neurologist was very aggressive with the IVIG I had it every month for 5 days straight (500mg a day). I hope that your doctor does look into this because it does give some relief. Unfortunately there is no cure as of yet for CIDP and it is very aggressive and progressive for me. Please rest and do [U]not[/U] overdue yourself. Take it from me I did and now after having this for 12 years now I am paying the price.

Chin-up always and always laugh and always always look for tomorrow.
hugs to you
Pam

Hi JoJo! Well that sounds like very good news and I hope that you will get usedto the feeling and end up seeing the other AFO get gone too! Congrats! Good luck JoJo!
Hugs
Linda H

Hi Jo Jo! One thing I have learned over the years is family and friends not wanting to hear how bad you feel. I don’t know why they are this way but even my mom changes the subject when I mention how bad I am that day.
Husband gets up and walks out of the room and my children end up on the phone making an excuse saying something like they have another call!
I have even had doctors say “Well you look so healthy”
Hate when they say that saying! If only they could crawl in my body and feel my pain!
I don’t even bother telling my family how I feel anymore. I just get quiet around them when I feel bad. And then I come to the forum and let out my steam. So anytime you need to vent about how bad you feel, Come in here and let it out.
Seems like normal people don’t understand what we are going through. But sick folks like me. We know how it feels and understand what you are going through. Hugs! Hope you feel better soon!
Linda H

Hi JoJo! I get problems at times with incontinence. UTI’s cause mine! And a weak bladder due to having a neurogenic bladder. They can offer meds that will help this and also there is a surgical procedure that to can help. Tacking up the bladder. Seeing a urologist for this is the best option. Hope this helps! You are not alone! Hate being that way. Mine comes and goes!
Hugs
Linda H

Hi JoJo! I know what you are feeling! In 1987, I was placed in the hospital for stroke like symptoms. Then they said it was not a stroke. Thought possible MS an because of a blood transfusion they tested me several times for AID but that was negative. Before that stroke incident, I started getting numbness in my legs. I later got diagnosed with lupus. 5 years later. But had neuropathy. That neuropathy after having surgery did some damage. Ever since May 14th, 2008. I have been sick with something that has been attacking my nervous system. Right now I am considered CIDP of unknown etology. Waiting list for Duke. And I see me getting worse everyday! No treatment as of yet except for a few meds to help ease the pain and not sleeping. The doses have been to low and after seeing my doctor he decided to increase a few things.
I feel your frustration. Really do! Maybe the neurologist will be able to get you back on your feet. My biggest fear right now is them saying there is nothing they can do for me! It’s not easy dealing with this nerve damage mess. I hate it! I really hate it! And it’s hard trying to tell your doctor what is going on! I think we all have our downs on these diseases. We want to have hope and then get let down makes us depressed.
You know! No matter how bad we feel our life goes on around us. It’s not easy either. The only thing we can do is keep our hope and never let it go and try our best not to give up. That’s not easy doing either! But we have to be fighters here and we have to keep going and try our best to have whatever life brings us. Take one day at a time. Do what you can and what you can’t do, there is always tomorrow. And if tomorrow brings you a bad day there is always the next day!
Sending you a big Cyber Hugs