Yes, you are all very right, and I need to do just that. I will need to go back and get all of my records from the last several months. I can't believe I haven't even thought of that, and I'm thankful someone told me that before it got too much later on in the game. I will need to get a big binder and organize all my results and records somehow. I will wait until next week to get started because I just had an MRI this morning and had a shot for pain to get me through it and so I'm not feeling too well right now.. and it's Friday of course. But I will get right on it starting Monday. Thank you guys though for that suggestion. I do have a lot of old medical records for my back, and have some stuff for this PN, but not a complete set of records. Mayo sent me a copy of results, and I have copies of blood work and some tests I have done that my mom has filed away. It would be nice, though, to put them in a binder instead of a file cabinet though so they can go to the doctor's office with us without worrying about dropping them and getting out of order.

Some places need proof you are YOU, and also there mite be some costs involved... BUT GET THEM! Some medical places destroy records after 2-5-10 years, you never know which? And, you never know when you mite need them in the future!
Getting the 'tests results'? Is one of the most useful ways YOU can learn about what is going on in your blood, your MRI's etc.!
The big questions? How are you gonna set up your 'tabs'? I've got copies of all the stuff, but can't for the life of me figger out how to do those tabs other than the 'bloodwork' and 'MRI's and PET scans'! But then, I'm exceeding a baker's dozen in the resident doc specialists department! Sigh.
Good luck, just get the paper and/or films or discs! You'd be surprised at how much time having this stuff can save you in the furutre!

's - j

I have no idea how I'm going to organize it. Just when I was going to start collecting it all, we found out that in addition to the neuropathy, there is something else that is probably causing a lot of my pain and I will be having surgery soon... so I haven't had the chance to get started on collecting any of it yet because I've had X rays, an MRI, and trying to get appointments set up and now an appointment with the surgeon. Oye. There aren't enough hours between 8 and 5.

Sarah, I'm taking 150mg/day topiramate, generic Topamax (and much less expensive). It works for me cause it helps with my pain and continues to curb my appetite somewhat, which is a good side-effect for some people. It helped me lose weight at 1st, you didn't mention that or it's most often noticed bad side effect, short-term memory mess-up! That is so bad, but I've gotten used to it and weaned myself down to 150mg from 200mg that my Dr. started me on....I take lots of notes. But if you're not getting any of it's benefits and with a kidney problem already, then, sure, why not go to another of the same type medication or whatever you and your Doctor decide....best of luck to you. Maybe it's because you are younger (from your photo) that it doesn't affect your memory....?

Well, my memory has been affected since this PN started, but I am on several medications--so it's hard to tell what has caused it. It could just be the pain that causes it as well. When the electrical shocks start, I forget what I was saying, etc.

I started to go off of the medicine, and went in to see my family doctor and asked him about it. He said that 100 mg is a low enough dose that it won't hurt my kidneys. He told me to stay on the Topamax until I see my neurologist (and to keep the appointment with him, even though the nurse stated on the phone that the doctor said he couldn't do anything). The appointment is tomorrow (Friday). So as of right now, I am still taking 100 mg twice a day, but am going to talk to him about it tomorrow. We'll see what he says.

--is the other problem you refer to spinal in nature? I ask in that it is often very hard to distinguish neural symptoms caused by peripheral neuropathy from those caused by pressure on the spinal cord or even from compacting of nerve roots (the subset of neuropathy referred to as "radiculopathy"); the symptoms can "feel" exactly the same.

Yes. I've had back problems since I was born... but I had an MRI last Friday and we found out that I have a herniated disc that is pushing on a nerve. My doctor said it will require surgery--and I'm assuming the orthopedic surgeon will say the same thing. I'm kind of hoping so--I'm hoping he won't want to try 12 different treatments first, because I want to get that taken care of so hopefully the pain can lessen... no pain medicine will even TOUCH this pain. I'm taking oxycodone and tylenol with codeine right now and neither are working...

The problem is that I definitely have neuropathy as well--large fiber and probably small fiber as well (though they didn't do the right testing to find that out). I have motor/balance issues, so even if the surgery relieves some of the pain, I have a feeling that the neuropathy will still be there. It's impossible to tell how much pain is from my back and how much is from the neuropathy.

OMG, I'm so sorry for your pain. I hope I don't make you feel worse but I just want to express that feeling for you. I take oxycodone too and it's the only thing that will really punch my pain level with sfpn so I can only try to imagine how high yours must be. Yes, let's all say "Hurry up, Docs and get the bone off that nerve in your back!" You know there's a higher level of narcotic pain patch that others have found very helpful for their very high pain level---the fentenyal or Duragesic patch, you might ask your Dr. about it and it comes in different strengths. You wear it for 2-3 days and change it, starting low and adding as to your pain level requirements, with your Dr. Until you have surgery, you have to let him know how much you are in pain....don't be shy about it. I learned.....and I'm normally a quieter person. Anyway, I hope you find some relief soon from one way or another. If the patch idea gets nowhere, ask for an increase in the oxycodone....actually ask for that first.

I can't have that patch until I am sure that I can tolerate at least 30 mg of oxycodone a day.. and right now I am only on 10mg of oxycodone 2 times a day... so I would need to be on 15 mg at least twice a day before I can go to the patch.