Thanks again. The patch does help but still the pain is severe. I'll take any relief of course. I'm thinking I may have to keep an open mind of going to Mayo if they want to see me after they review my reports. Will see I'm trying to take one day at a time but like many of you know it is easier said then done. The distraction is hard when the pain is severe but when less I do see a more positive self of course. I do think the meds are screwing up my stomach that is for sure and the constipation issue. Will see I just want to find the meds for some relief to the leg and that work quicker. I hate the starting over and over again and fear of side effects and not working. Well thanks again. One moment at a time.

Daniella:

Do you know for sure if Mayo is the best place to go for nerve problems? I know they are great in other areas, but I thought Johns Hopkins or Cornell were better known for working with nerve problems.

Maybe someone who is familiar with these will come along and post beneath this and provide more information...

Chin up!
Cathie

That I don't know but we sent it there and to Chicago. I think my mom heard that Mayo has a good program and someone mentioned here they possibly have a week pm. That is scary for me though since I fear being touched. Thanks again.
On another note I was wondering I always see a lot about supplments here but very little on diet. I read through the stickies and saw about omegas etc. I work with a nutritionist for my other issue but was wondering if anyone has found anything else helpful in terms of nutrition. Also if people who are not gluten intolerant found going on a similar diet helpful? I have such severe stomach problems seperate from this and have been tested but nothing comes up. Ok now thanks

--who are not necessarily gluten intolerant and/or diabetic or have impaired glucose tolerance, have noticed that going on a gluten free (or, in some cases, a reduced gluten) diet and cutting down on the sugars has helped to ease some of the symptoms.

It's probable that most of us should not eat so many simple carbs anyway, for lots of other health reasons, but it's likely that many of us with nerve damage are particularly sensitive to their determinental effects. And, obvously, diabetes and gluten intolerance are causes of peripheral neuropathy.

It may well be that the gut dysfunction that such sensitivity engenders also hurts us in absorbing other essential vitamins/minerals. Moreover, those of us trying to heal damaged nerves, or any other damaged tissue, indoubtedly need nutrients wellin excess of minimun daily requirements--at the very least, vitamins C, D, and the B's, along with essentail fatty acids and magnesium/calcium/potassium.

In the end, as Wings has noted, we need to create an internal environment that is most conducive to bodily regeneration, flooding it with that which is good for us and trying to avoid that which is not.

Daniella I have searched the forum for your posts, hoping to find an explanation for what you have, or a history of what has happened, adn couldn't find it.

Please point me to it, if it is here. If not, please tell us--when and how did symptoms begin and develop, and what tests ahve you had and what do they show? If you don't the answers--the exact answers and not just the conclusions---please ask your doctors for copies of all tests.

On www.lizajane.org you will see spreadsheets with lists of tests for neruopathy. If you've had them, fill it in.

But Daniella, the most common thing to cause excruciating foot and lower leg pain as you describe is plantar fasciitis. That makes the foot exquisitely tender. Has anyone considered this? Or are they positive this is peripheral neuropathy? If so, on what basis? What tests show that?

Please share the details or we can't really help as we are able. It's frustrating to not know what to offer you.

I'd like to second what Liza Jane posted, and add something which I think will be the start of you dealing with your pain if you take it to heart.

You need to get your emotions under control in order to effectively deal with this and get relief. Just screaming HELP, HELP, HELP, HELP will not get you effective help. I think you need more than a hug right now. You need hard information, and you need the calmness and patience to put it into use.

Strong negative emotion makes any pain worse, and especially nerve pain. Strong emotion means fear, anger, frustration, worry, hate, panic.

If you calm down and get rid of the panic and just accept emotionally that you have a lot of pain right now and you'll have to endure it for a while, and that you WILL survive, pain or not, I think you'll find that the pain becomes less.

So take a deep breath, and deal with this powerfully. You have not done so in this forum so far. That's why I haven't replied till now. I don't think you've been ready to hear anything that doesn't offer INSTANT relief.

Check out http://www.theacpa.org/people/ten_steps.asp , and the rest of the American Chronic Pain Association site. For your sake, consider what you have to do, and then come back here when you're ready to take charge of yourself, give us the information we need to help, and to listen.

I wish i was still in Mi. i'm sure we could stagger into the Drs. together,
and totally confuse them. If this keeps up i think your going to have
to go to ER in Ann Arbor do you have a way to get there. I'm going to
E-mail my Nephew in Maryland to see if his brother still in practice in
Ann Arbor. If not maybe he could reccomend someone to help. Hang
in there honey i'll see what i can do. Oh boy it's so hard Sue

He has retired and out of the country right now. Please if this pain keeps
up you will just have to go through the ER until Eric brother get's back.
Eric left a message for his brother to e-mail me as soon as he can. We
will see what we can he can do. I'm sorry but Sjogren's does effect you
in crazy ways,i forgot all about him. should be my middle
name. Sue PS i bet alot of us are in nightshirts or gowns,and after
rereading,Bob i bet you got sexy double chins. Cathie,my hairs a differant
color than Billye's same haircut. But Cathie when you said high school
did you have that big old hair,boy i did and i mean big. Sue

"Cathie,my hairs a differant
color than Billye's same haircut. But Cathie when you said high school
did you have that big old hair,boy i did and i mean big."

Nope. No big hair... Big came later, compliments of Prednisone, only it wasn't hair...

Cathie

Hi and thank you. I'm somewhat lost on the replies. Thank you Sue for that and emailing that person.I really appreciate it and your so kind. What type of doc is he? I have a referal to u of m but 2-4 mth wait and have gotten so many opinions.I may go to see Mayo too.Right now for the past while no dizzy so I don't know how they will help me at the er as the other didn't. David I'm sorry if I come off like I look for a quick fix but I don't think so. I have seen in the past 4 months 8 different docs and many opinions. I have had every test even if a 1 percent chance. Trying many meds,pt,so on and basically am worse. Any step forward gets ruined by a doc touching me.I agree I get very emotional but my pain through vicadin is hardly relieved. Also when docs are suppose to help you and not only do I not get better I get worse when they say it won't it makes me feel scared and lost.As for my issue its really the left inner ankle but the pain goes through to the foot/calf. My ssep and emg said pn. I think I have 2 dx one unfound. This is because for 3 months just there and why they thought it was tts but no tests showed and had 2 shots without relief. Then I started which have not acted up in awhile the neck feeling like it got shot and the right leg pain. My other tests do show inflamation such as bone scans. At this point though who knows. I may have the pn but also something like heel spurs in addition. I still feel like a huge piece is missing.
Lizzy I have posted before but I will give a little backround to not bore you. I thank you. Anyhow I thought at first it was an overuse injury and started the tests for that. It ruled out that and was put in an airboot in case. It didn't get better after shots to that area and they thought it may be a nerve problem coming from the brain/spine. Started the tests for that while just getting worse and basically bed ridden for 3 months. Now I can finally do errands but the pain basically keeps me in. I'm 28 and have a long history till this year of very severe anorexia. I had been in and out of multiple hospitals with cardiac issues and a very low weight. This may have a part of my current issue. Though better healing from the past programs I have been in is extra slow or also can cause nerve damage. Right now I have what they feel is complex.
Well thank you all and I didn't mean to come off a crying baby. I'm really scared, in horrible pain, and lost. I have never dealt with issues like this and am working on being more calm and less anxious.