Dianosis?what Do I Have???
 

My symtoms seem like what everyone describes, and then they dont. My pain never gets better. If I lie in bed all day and never hang my legs down, then I will not be in pain (much). If I get up and just sit with my legs down, the pins and needle pain ( no numbness at all) and burning and stabbing start. If i try to walk, then it is all the above plus knifing and torture, with tight shins and a tight band around my ankles, like my legs are in a vice. then it moves up to my thighs and waist up to a level 10 pain. I had multiple foot surgeries, and prolotherapy injections inflamed my nerves to inlcude my legs and spine.
I didnt have this kind of pain in my legs until the injections 15 months ago.
So my nerves were so irritated they are permanently damaged? so they cant heal? no one knows, or they dont want to tell me. the neuro said this was for life. meds are making me sick. I want to try to understand what is going on so I can get some relief.
what do any of you think?
steff

Steff, While I'm no doc, not by any means...
 

There are four basic types of neuropathies...in the simplist forms they are: Ideopathic [unknown/not a clue] Immune, Toxic and Traumatic. I'm gonna guess you fall the the last category? While the trauma isn't pain from severed nerves resulting from a car crash or a fall down a flight of stairs or the like...you've probably had some nerves damaged or destroyed from your surgeries? Well, how and who is gonna determine this? Someone from the same practice? I'm gonna bet IF you can find copies of the papers you'd signed for those foot surgeries...you probably signed your life away in terms of getting any 'satisfaction' from that quarter.
While I got very lucky and actually got a 'diagnosis'...treatment of that and other overlapping issues is still TREAT THE SYMPTOMS...Many nerves can still regrow and reprogram to work better than not having any nerves at all. Just keep in mind that a zillion miles of nerves can DIE in minutes! They re-grow about a 'centimeter' - a quarter of an INCH per month.. They only connect and work right IF we make sure our diets, supplements, and EXERCISE is of the nature to help them grow and work best. The only suggestion I could think of is that you go thru www.LizaJane.org s sheets and see if you have been tested for anything auto-immune...the reason I suggest this is that I too had 'neuropathy' but it kept spreading..It too is almost to my waist. It could be your 'trauma' had triggered some other stuff.....possibly with a cold or flu in-between? to go into some sort of overdrive.
The very, absolute LAST thing you need to be is SCARED! While it's a totally frightening experience to live thru this all...It MUST be your motivation to learn more of what has been tested for you and what yet needs to be done! PUSH for those tests...If your docs won't allow or go for it? Go to the biggest best teaching hospital you can get to and GET SEEN AND TESTED THERE! ASAP![Ask to be put on any cancellation lists to get there] I found that having some big-whig testing and conclusions somehow 'motivated' my own neuros to do what needed to be done.
I hope this helps...I can feel your frustration in your words...Many of us have or are 'there' in different forms. I know you will keep us up to date! - j

HI Steff!
Gosh you sound SO miserable! Your pain must be dreadful! I sure feel for you! I know how frustrating it is to not know whats causing the pain and just continue to pay dr.s and do tests without good results!
It does sound like the surgeries you had have caused damage to your nerves. I hope your dr. can figure out some pain meds that will help you. Maybe you need the epidural or some other the "spinal cord stimulation" that I saw in a pamphlet at my dr.s office. They run a cpl wires up your spine and send electrical stimulation up them......sounds similar to a TENS unit but internally. It's for chronic pain. Sounds like by this point you are ready for any type of procedure that will end this pain.
Take care.......Hope your Sunday hasn't been too painful. Thinking of you........

thanks both of you-
I am thinking of where to go next.
dont want to do spianl cord stim-real bad news about that one with all my problems-
steff

YOu say that, but I know of others...
 

who have gotten a great deal of relief from the systems... Tho for some it takes lots of adjustments...
On the one hand anything for relief? On the other hand, what programs for any relief are the safest?
Honestly! Neurontin is NOT the only way to go!
Keep faith and go be your own advocate - no one else can do it for you! -
:hug: 's a plenty! - j

Ok honey
 

Do to recent mistakes serious ones,i can no longer speck up the way
i was able to or even felt the need to. Let's say those who were there
to help me did a great deal of harm.. My name is Sue and all i can advice
is give us your area,(if you want) perhaps we can tell you of a good Dr.
in your area,i live in Columbia, Mo. We have people from all over small
as well as large cities in US as well as peoplr from UK just a lot of places.

There are many kinds of foot surg. and spine,so on. More detail about
your problems..I always say i was a nurse but once one always one. But
things change so much nd so fast,i allowed myself to be harmed and very
badley. To the point of having to slow down. Be i will help in anyway i can.
You aready have been giving good advice and will get more.. Believe me
you have a family here if you want and need them,and we both know you
do.. I have family who love me but right now what and who i need is my NT
family. And you because i think just a little way down the road you will
be able to help others. I will be keeping a eye out...Pain is awfull,just
awfulll. I will be in and out of the hospital and also in PT..I am going
to sell some things so i can get awireless computer,because i miss thease
wonderfull people and need to be in touch.

Now no more running over your problem,i just want you and anothers to
know i care...Keep posting for help,i'm keep listening and i know we will do
the best we can.. Please free free to e-mail or pm,but to you who have
and i missed,i'll catch up. Ok let us begin :eek: Sue

to all-
it was the prolotherpay shots that fried my nerves. of course they were all ready on edge. but i walked from one end of the mall the other (in a four pain) the day before i got them. now i have to use a wheelchair if i can even go at all.
so now the next step is to try cymbalta. which i am afraid to do becasue i have heard so much neg.
have already had reactions to lyrica and neurontin.
i live in Huntingotn beach, ca. whoes the best to see in my area?
ucla, usc or uci or?
i have seen two of my own docs and no one can agree.
thanks-steff

Hi. I'm sorry for all your pain. They were talking about the stimulator for me too or a catheter. The catheter was so that I could do extreme reabilitation on my legs that are my issue without so much pain. I know you fear the Cymbalta and I understand as I had bad issues with neurontin,lyrica,elavil but cymbalata was fine. I'm up to 60 and the first few night were bad of nausea but now ok. Just make sure you take it with food. I'm not sure of the tests you have had but some of mine I had repeated and it then showed more. Feel better and take care

Hi Steff:

I am not very familiar with prolotherapy, but understand the injections can consist of various components. Do you have any idea what was used in your injections? Or can you find out and let us know? The doctor's office should be able to provide you with this...

I am so sorry you are suffering like this. You have picked a good place to come to though. You will find a lot of information and ideas here and hopefully, someone will be able to come up with some suggestions to help you out...

Cathie

the injections had glucose and lidoncaine, possible phenol. the doc is not sure.