Hi all...:) I get swelling in my feet and legs all the time. Along with tingling and numbness. I've had all the tests done for Autoimmune system, all were good. I've had every blood test imaginable the past year and all was well. I thought at one point I had MS. MRI's concluded i did not. My sister has Lupus, so I thought there was maybe a possibility, but 3 times a charm, all negative. When I had my EMG done a few months back, it showed I had Neuropathy on both sides but the right side was worse. I also have DDD and Foraminal Stenosis. I had MRI's 8 years ago and an EMG done then as well... To read the changes my spine and cervical have gone through really just floors me at this time, but they said it doesn't warrant surgery. Okay, I'm fine with that. My last Neuro App. she didn't tell me what kind of Neuropathy I had. It was quite the unpleasant visit. I guess they were really focusing on the MS part, which they concluded i do not have.
The one thing they never did was a Lumbar puncture.
I am numb all day long. I can barely walk for 5 minutes and my legs are very heavy, my arms and hands are always weak. Forget opening anything. lol
It stinks to sit, lay down in bed, stand, etc... I take Lasix for swelling but at times, I see it isn't working. I will start Lyrica in another month. Being on IowaCare does not have it's advantages, it's a step down from medicaid. I can't choose my doctor's. I'm stuck with where they send me.
I had to wait one month for approval on the Lyrica and prepaid $50 for 3 months and just found out yesterday that I have to wait another month b/c someone 'oopsed' when they told me it would only be a month at the pharmacy. The drug company gives it free and I have to pay the pharmacy, and she said the drug co. that makes this drug is going to call me as well...? So I'm waiting for my doc to give me a call back about getting gabapentin for just a month. I have to pay out of pocket for all meds.
The only relief I get is when I take my Clonazepam, and that's minimal and it helps me sleep, so I take it at night only. While all day, this is building up pain and really never leaving.
I started experiencing the shooting/electrical pains that start in my finger tips and radiate up to my elbows a few months ago.
My numbness will also go all the way up to the nether regions.
I have a Neuro app. on July 3rd and I really want answers as to what kind of Neuropathy I have. We know it's not Autoimmune, Diabetes, Alcohol, Infection, Tumors, Vitamin deficiencies. The only thing I can really think of is that I was extremely active for so many years. Lots of sports when i was younger, Gymnastics being a big one for me. I've never even broken anything in my life.
I'm really up in arms here lately and could use some advice as to what to ask her when i go in to see her.
I finally got a lawyer a month ago to take me, (that's been a fight in a half) and I need her to state exactly wtheck is going on.
I know this has been long but ANY advice would be greatly appreciated. Thank you

Sorry I made another post as a new thread. After typing this all out, it timed me out and i thought it didn't post. lol Such a newbie. ha ha

Wreck - I'm sorry you're in the same boat as so many of us. I'm still in the undx'd state, nobody has been able to tell me what's causing all of this. Just started the prednisone this morning to help with the itching that came the same time as the edema (but the edema went away on its own).

I just hope I don't swell more. My pants are barely fitting as it is right now. I'm crossing my fingers that the prednisone helps my PN symptoms (which would also mean I'm closer to a dx).

If you start your own thread, the pros here will be able to help you a little better. Be sure to put down the numbers if you have any lab results with you.

Thank you...my labs have all been in the normal range. We moved recently and it's all in a box downstairs. I'm not even venturing down there right now. lol
There's so much more I experience, but I was writing so much already.
I do get the spasms in my legs and hands. The night time body jerks.. to the point I've actually beat my husband up and didn't know it. ha ha
I also take about 10mg of Flexeril twice a day for the spasticity in my hands. it helps at times and sometime's it doesn't. I can type so much better than i can writing. Holding a pen is impossible anymore.
I'm really trying to keep a level head and a happy one about all of this. It's just so hard certain days.
It literally took me a week to just shower. I know, (gross) but it's just such a task all the time. If you knew me, you'd know it's bad when I don't shower. :thud: I've gone through stages the past 8 years but the last 2 years this really came on a lot faster with everything and the symptoms. I get cog fog, TN as well. My hearing loss has gotten worse in my right ear. I could write a book and call it, "Falling apart in your 40's" ha ha
Thank you again for your response.

Have been away for a while went to florida for a while to soak up the sun.well this happened to me on day 5 of 12 got edema so bad I couldn't walk feet swelled up and legs probably gained 10 lbs in 2 or 3 days. Has never been so bad and fast. I did drink several beers maybe 10 each day for the first 4 days. Then it hit. My PN was on fire and I was out in the salt water don't know if it made it worse or not. My wife is an RN and she said the same thing heart or kidneys. I have dropped 50 lbs and feel better but it seems carbs and alcohol is my problem that triggers a flare up as I did eat carbs more than usual. I still have not recovered but did lose 10 lbs in 3 days by drinking over 1 gallon of water each day. I feel like my time on this earth is running out and I really have no choice to find a hospital that can treat me as an inpatient. I am out of options as my pain meds are not effective anymore. Edema is no joke something is very wrong with me I am thinking liver most likely.

A few months ago, I did a water fasting for 3 days. Well, needless to say, it only lasted 2. lol I lost 6 lbs in water weight and I really felt good. I didn't have to take my Lasix for almost 2 weeks. I could only imagine how well I'd be doing if I had gone the whole 3 days or even a week. Our body stores so much junk. I'm not a huge health nut or anything like that, so I'm not suggesting everyone go out and do what I did. I just know it did help me and i wish I had the will power to do it again and stick with it. I love my carbs. I'm not a huge drinker as I only do it socially, and since I don't get out much anymore, that's really rare these days.

I have to ask this of all new members... what was your B12 level?

Did you get that tested?

"normal" lab ranges in US go down really low, and now the accepted protocols are that 400pg/ml is the new acceptable low.

When you get below 400, there can be significant nerve damage.

Also using Lasix will deplete Vit B1 (thiamine) and magnesium along with sodium and potassium. Magnesium is critical for mitochondrial functions (energy production), and proper metabolism and nerve functions.

Here is a video on low B12:
It is very sobering...
http://www.youtube.com/watch?v=BvEiz...ature=youtu.be

And this is my B12 thread with all the details you'd need to
investigate this:
http://neurotalk.psychcentral.com/thread85103.html

My B12 I have on the one paper I could only find right now atm was at 377. It says normal range is 211-911. I know the other 2 times it was in the 400's. I just have all that paper work in a box in the basement right now.

o0o I see the B1 helps with digestion, which I have a huge problem with. It seems my main doc is so busy, State health facility, you have to pick one major thing when you call for an appointment and stick to that and discussing anything else is a farse. blah!

"A deficiency will result in beriberi, and minor deficiencies may be indicated with extreme fatigue, irritability, constipation, edema and an enlarged liver. Forgetfulness, gastrointestinal disturbances, heart changes, irritability, labored breathing and loss of appetite may also be experienced.

With too little thiamin around a person may also experience nervousness, numbness of the hands and feet, pain and sensitivity, poor coordination, tingling sensations, weak and sore muscles, general weakness and severe weight loss."

No enlarged liver, I had that checked out. No heart changes but decreased appetite, not loss. And no severe weight loss. I can dream though! lol
I maintain.. I really don't gain too much, but I've had 4 kids and I'm 42 now and been that size 1-3 before I had kids and after I had my first 2. It's the second set that did me in. hah

I'm about 5'5 and 160 and people get really surprised when i tell them that b/c they say i don't look it. -shrugs-

I will definitely look into getting this B1 though, thank you. It makes a lot of sense, least for me.

P.S I had to remove your links b/c it says I have to be a 10 or higher to post them when I clicked reply to your post.

You are marginal in your B12 levels. The old lab ranges are a decade out of date.

I suggest you start B12 right away...you can buy it now at Walgreen's and Costco-- the active form called methylcobalamin.

When starting it is best to do a high dose of 5mg a day on an empty stomach, for about 3 months. This pumps up the blood levels so that more B12 can get into the CSF (cerebral spinal fluid of the spinal cord and brain--where alot of the damage can occur).

Then after 3 months you can go down to 1mg a day or use the left over 5mg twice a week to maintain.

B1 is different. But also helpful for some PNers. The active form for this is called Benfotiamine, and still not commonly available in stores. Online is best. I use Doctor's Best brand. 150mg is often enough for most people. You can also buy the plain thiamine in most drugstores. 300mg a day of that in divided doses is the PN dose. (100mg 3 x a day). You can take either...not both together.

B1 and B12 are very different and do different jobs in the body.

I do have B12. They're 100mcg's.
I also have B6. I find I get absolute terrible heartburn when I take them.
I was also doing the honey and cinnamon together a year ago and then I went to cinnamon capsules. Those gave me heartburn too.

How can they being going off of old chart levels? Just curious. if I bring something like that up to my neuro this week, I bet she comes unglued. lol