Hi there. Sorry for not posting for so long, i was on counseling and my psychologist recommended i no longer entered this website. According to her, the only thing it was causing in me was fear. And yes i was getting scared from all the difficult experiences you expose here so i decided to follow her advice. Today i feel i need to talk, so i am going to try to write a post from my Herat.

I have to say it guys, my neuropathy is quite mild, compared to many’s, compared to almost all people’s here. I am able to walk, run and do all my stuff. I spend time with a lot of people who don’t even imagine i have a health issue. I actually look like a completely healthy and young girl,. The thing that hits me is that i am not and i don’t know if i will always look this way (not young, but healthy). I am afraid of not always being able to live my life independently . I am young girl (only 23) i am starting my career, i am in the search of my way in life, a couple, a family of my own . What if i go worse?? How am i going to work if i get disabled???, Who is gonna love me this way??? How am i going to live my life?? These are thoughts that always cross my mind.

When my neuropathy started (about a year and a half ago) it was just odd sensations and pain. Very weird sensations, as feeling worms swimming along my legs, as feeling a piece of cardboard underneath my skin, as feeling sudden fasciculations, as feeling knives inserted in my legs and a bunch of cramps and other stuff. I went to the doc and the search for the cause started. He said “you have a polyneuropathy”, it was confirmed by a EMG. Well, “what kind of polyneuropathy is this? And the search continued. “It is an autoimmune mediated one”, said the doc. Ok, autoimmuned mediated neuropathy… Is this CIDP? Doctor says no, i say i don’t know, because i receive the same treatment people with CIDP get (IVIG and Imuran), but i have never experienced loss o balance or energy, fatigue, weakness. So is this a mild form of CIDP? Or is it something else?? If it is something else, then what is it???? What is its name?? Does it have no name?? What do you think???

My fist treatment was prednisone. It gave me no releif and the only thing i got from it was extra weight and a terrible acne i am still dealing with (after two months of totally giving up prednisone). Since prednisone didn’t work we took the next step, which was IVIG. IVIG has been excellent for me. I feel very different now. But it was also extremely expensive. I am not poor like, unfortunately, many people in my country are. But still, it would be imposible for my family to pay this treatment if i need it for a lifetime. I keep feeling guilty, because i don’t think it is fair for a man who has worked a lot during his life (my father) to spend all the money he has managed to save in some medicine. People with CIDP need to get IVIG every month or so to be able to walk. So, what if i eventually need IVIG that often???. So far i have only had two IVIG infussions we were able to pay for. My doctor says this is all i may need. But how and where am i going to take the money if i get worse and i need it on a regular basis???? I didn’t have an insurance when this all started, how was i supposed to imagine i would get sick??? And the public health system in my country is lousy. I keep worrying about this and it has been added to my health problem.

After IVIG and a 30 session hyperbaric medicne treatment i took (of which i will talk to you in more detail in an other post) i recovered well. I don’t know if it was IVIG, the hyperbaric chamber, or both combined, but i had an EMG done and it showed total recovery. My nerves and my velocities and everything, according to the test, are normal!!!! This gave a lot of hope, but i also made me Gonder: if my nerves are ok now, why do i still have this odd sensations and pain??, are they healing sensations???, or is it that my nerves are being once again attacked??, or is that this damage is permanent and they are always going to remain this way???. My doc tells me to think positively and to expect them to heal, but is it realistic to expect to have my legs completely normal, as they were before having the neuropathy??? Or do you think i should just asimílate the idea of living life with this pain and sensations???

Currently my main problem, as i told you, is still the pain and sensations. They are not as bad as they were but i experience them 24/7. Since my work is mainly intellectual it has become very hard for me to focus and concentrate. I wish i could take off my legs and think clearly for a while. Of course this is not an option, so i need something to get some relief. I am on Methyl b12, do you think i should be getting any other supplements??, which ones??.

I have been considering trying the “Rebuilder” i heard about here. Do you recommend this device??, is it as good as the web page claims??? Have any of you used it???, do you think it will work in my case???. I would like to try this device befote going to drugs. I was on lyrica (150mg a day) and i didn’t notice a difference. What other drugs do you recommend?? Do they work for both pain and sensations???. What else can i do to get some releif???

Sorry for this long, whiney and boring post. But i have no other place to Express my feelings. My parents must be already very tired, besides they are dealing with their own problems. Friends try to be understading, but cannot be when they haven’t experienced what i experience every single day. So guys, thank you for reading me.