the waiting is horrible,, been tehre done that, now i;m left with numb burning hands,, numb legs,, hardly able to walk or use my hands anymore,, this after two years of complaining, and no one listening

But we are listening...

Mere

While waiting in the ER to be seen? PAIN AND NUMBNESS went from ankles to knees, and from hands to wrists halfway up the elbows. It got worse from there after I was released....w/o any guidance at all. And, very vague follow-up. After admittance to the hospital it got so bad?... I needed both hands to eat while in the hospital...one to hold the hand w/the spoon holding the other hand to get it 'near' the mouth? Needless to say, rice wasn't fun? Soups? Forget it! I acquired a liking for Jello of 'hospital colors' then because I COULD get it into me! At home, basic ventures, such as going to bed, bathroom and even bathing were exhausting at best? BUT That I worked very hard thru PT and plain stubbornness to get over... Be it a spinal or neuro thing that you have? It IS NOT GOING TO BE EASY! For your sake really? I hope it's spinal - why? Because they CAN FIX some things in this quarter! With plain old neuro issues, it can and does get squirrelley. But being a squirrell? Doesn't mean things can't be helped in many ways! Keep that gumption and faith in yourself and who knows? What mite happen? Good things I'm hoping!!!!!!!!!!!! -j

Hello, everyone!

No, you all didn't scare me off, however, all your information did cause a lot of anxiety and stress to my already fragile health. You didn't know this would happen to me - neither did I.

I do not blame you for ANYTHING! Your knowledge WAS beneficial and am SINCERELY grateful to you all for you love and concern.

You did not know me but you extended your love and caring to this scared stranger and I will be ETERNALLY GRATEFUL for your knowledge and help.

In a nutshell -

Had a terrible time last weekend and my neuro worked me in that Monday even though she didn't have all the results in yet. Yes, I have neuropathy but she couldn't tell me everything since the biopsies weren't back yet. She confirmed ALL the info you all had told me about how I needed to have 500 B12 as the minimum (I think I was 346) and that she needed to test the metho and whatever the other was. I was so GRATEFUL that you all had told me about this and that SHE was up on the latest info about B12.

So I'm waiting see her in another week for B12 blood work results as well as the biopsy and other tests.

I'm on 1000iu B12 shots daily for a week, then weekly for a month, then once a month for a year. I'm taking prescription folic acid once a day.

I've been ridiculously thirsty with dry mouth for months now and I have complained about this to all my doctors. None of them considered it anything to be concerned about but kept telling me to eat. It's difficult to choke down food with dry mouth and I've lost food that would stick in my dry throat. Then I started having more pronounced diabetic-like symptoms where I felt bad most of the time, drinking whole bottles of water every half-hour and still not getting relief. This past Tuesday I noticed that if I ate fruit I would spike up and feel great for a short while. I went to my primary doc with my complaints and bloodwork showing I needed thyroid tweaking (glucose was normal but I had read some type 2s don't show up with the regular bloodtest) and asked for a more extensive diabetic test, which he did because he worries about me and wants me well. He is the saint who figured out I had a thyroid problem when everyone else said I was normal due to blood work. He actually did a scan so he saw one side was enlarged.

Saw my rheumo (another saint) on Thursday as I waited for the diabetes test results and she said my body was going into a faux diabetic situation because my anxiety about not knowing what's wrong with me was engaging my fight-or-flight almost constantly. This was making my already screwed-up non-eating problem worse. She said if I kept this up I would have a nervous breakdown and be put in a home.

I expressed my concerns about Actonel's long-term effects (like that Boniva *****) and how I hadn't taken it for a while and she told me to just stop it. I also expressed concerns about one of my arthritis meds and since I hadn't taken it while I couldn't eat much (if I don't eat it around a full meal it makes me sick) I hadn't taken it and it seemed it wasn't doing anything anymore. So she told me to stop it. Also, she told me to temporarily stop Enbrel for a month to see if I needed that, too. Partly I see she's doing this to lessen my stress/anxiety. I really love this woman. She gave me back my life after dealing with chronic pain in my back and chest for years.

She told me I WOULD get better and I needed to stop stressing and reading/researching about all the 'what ifs' and letting the anxiety take me over or I WOULD become diabetic. She's known me a long time so seeing me like this is bothering her a lot.

The biggie was the diet she suggested. She told me to start 'grazing' throughout the day to help fight the spikes and to eat mostly protein snacks - meat, cheese, nuts, peanut butter with crackers and suck on hard candy (don't crunch it but let it melt slowly). Fruit was fine in the mix but to eat it with some protein. For drinking throughout the day - lemon in water to help get my salivary glands going.

Also, drink herbal tea every night and make it a ritual to relax and reflect.

I did the tea that evening along with a little protein and went to bed.

The next day I didn't have the terrible feeling I had when I first woke up. The only bothersome parts of my body were my right shoulder-blade and my right ankle/foot. I was NOT feeling intense problems all the way up my legs and into my groin! Naturally, I AM a little tingly there, but definitely not very bad.

Throughout the day (like every five to ten minutes) I nibbled on protein - a tiny bite of string cheese, a small piece of micro-sliced fat-free roast beef, three nuts, a life-saver when I was somewhere where I couldn't pull out food or drink, and lots of water with lots of fresh lemon.

Oh Lord of Mercy above! I had a GREAT day! I was rarely annoyed by the neuropathy! My back was actually being a little painful/bothersome, which was GOOD because it wasn't NUMB! I had a brace on so that helped.

Sure, I got tired walking a lot and I had too many clothes on (the weather had gotten warmer than expected) but I was OUT with officemates at an art museum, and having lunch and eating my usual portion of food!

So things are looking up!!! ...

... however, I really can't be here for a while since this place really DOES kick in my anxiety. The information here is GREAT and all of you are SO SUPPORTIVE AND CARING. You DID give me the information I needed to understand what my neurologist was talking about AND to know she is up-to-date with the latest treatments and supplement numbers.

If I hadn't gone through months of multiple stress situations prior to getting neuropathy I know I would be able to handle being here in a more rational manner. Honestly, while my anxiety is better, it can be set OFF so very easily, and by the silliest things. Watching an exciting TV show can kick it in and it's just because it makes my heart race faster. Hearing cool music can make it happen. This is a real pain in the buttocks, and I don't mean my neuropathy/arthritis.

And I need to stop driving my different doctors batty with all my questions. I need to be informed, which I am now. And it's all because of you wonderful people.

Actually, it's not just here. I need to stop doing any health research for a while until I have better control over my anxiety (without drugs, of course). It's going to be a long road but I am DETERMINED to get better. The fact I felt SO GOOD yesterday is a BIG STEP.

I do suspect I'll be back here eventually. Eventually I'm going to bring up Vitamin D to my docs, something I learned about here! But right now I need to relax myself and not think about anything except about my goal of getting better (which both my neuro and rheumo say will happen) and staying relaxed about that goal.

THANK YOU, EVERYONE!

I'm glad you are feeling better. Keep it up!

Low blood sugar can cause all sorts of alarming feelings.
Tingling, twitching, cramping, sweating, weakness, fatigue,
anxiety, etc.

There are some nice nutrition bars out there with balanced protein to carb ratios. I use Zone bars. (I like the blueberry, and hubby likes the chocolate ones). They can keep you level too.
I keep some near the bed if I wake up at 4am and feel awful.
(if I don't eat a good protein meal at night --sometimes I skip dinner)-- one of these is very helpful. They have Omega-3s and vitamins too.

If you are doing peanut butter, get the new Smart Balance one.
It has flax oil in it to help keep your EFAs at a good level. The EFAs help nerves and inflammation.

And yes, get that D evaluated. That alone can change your life for the better!

Thank you for the suggestions, mrsD - you are such a goddess!

I will check on these.

I know I will need to rest tomorrow since I did so much again today. I'm wilting quickly and I'm SO TIRED of eating all day! LOL!

Yes, I feel so much better, even if I feel a little less well than I did yesterday. I am so happy something so simple has been found to manage this pain.

Eventually I will add more and more vitamins to the mix to get myself up to par again and I will NEVER let myself get into this kind of state of unintentional malnutrition and stress/anxiety again.

Now I need to get back to my mother, who is having non-invasive back surgery on Tuesday that will fill in the tiny fractures in her spine and relieve her pain. If only I could be that lucky!

Again, Thank You and BLESS you all!

Glad to hear that you had a good appointment and that you are feeling better...

Mere