Quickly progressing PN

[Cry Tears]

Now I'm really getting worried. The Neuropathy seems to be gaining on me every day. Now every inch of my body feels like its on fire.
The only way I can descibe this is like I've jumped in a pool of hot chili sauce. Every inch of my body is burning. The burning on my trunk is only mild while my extremities feels like a sunburn.
My feet and hands have mild muscle weakness and I'm finding myself very clumsy.
My face and upper lip area are really burning. Even my eyes are on fire, but look clear, not red like they feel they should be.
The slightest touch sends me over the edge. I can feel every seam in my clothing.
My grand daughter was trying to get my attention by tapping my arm. My response was to retract and yell at her. It just makes me very edgy and agitated.
I'm really puzzeled as to why this is happening to me. I thought I was going to get better after all I've been through....then finally found some answeres and started feeling so good after being on B12 a few weeks.
Could this be my body making repairs? Or is this an awful form of PN and its only going to get worse with time?
I'm going to give in and start taking the Lyrica meds small /trial dose they gave me a month ago...if I can find it!
What do you think is going wrong with me?
Thanks...Cheryl

[dahlek]

you trust. Call this morning at the tick of the clock striking 8 or 9 whenever they open up....leave a message that burning has spread body-wide and what should you do? Bet they'll call back and want you IN rite away! Today or tomorrow. They'll probably want to do a full blood panel and schedule a spinal if they're good. I sure hope so..

My hopes and heart are with you dear. - j

[nide44]

The B12 could be working and over sensitivity can mean repairs, not progression
but it is unusual for this to be a body wide sensation like you describe.
"J"s advice is good. See your doc asap.

Remember - if you do take the Lyrica, it is not a PRN med.

You do not take it on an 'as needed' basis.

It needs at least a week or so to get into your system
and then needs to be regularly taken on a basis so it works
in your body 24/7.

Relief is not right away, with Lyrica-

So, see that doc ASAP !

[Cry Tears]

I've called numerous docs on my short list of doctors my insurance will cover. Every single one of them tell me "NO way"...won't take me because I have Fibromyalgia or because of my taking pain meds.
Most of them say they're not taking new patients.
The one doctor I finally got a lead on...he's going over my records to see if he will take me on as a patient. Its been 2 months now despite my gastro doc calling him, begging him to see me right away.
I don't know if its something about living in Oregon and pain clinic patients.
But they say it borders on drug addiction when you take Oxycontin.
OK..whats a person supposed to do when they have chronic pain and suffering? I have mulitple medical factors....doctors just don't want me for that reason alone. And I've never ever sued any doctor despite my having good reason to on 3 occasions. I just let it go...didn't want the stress as its just not worth the few dollars I could have gotten for their mistakes.
And going to the ER will just get me roll eyes...and I'm not willing to receive that ever again.
And them labeling my as panic attack when in fact I was bleeding to death from an intestinal anuerism....well duh! But that ER doc refused to draw my blood...if she had she'd seen the reason for my problems...2/3 of my blood was missing!:eek: Sadly...2 weeks later, I fell "asleep" driving with my grandkids in the car....then a doctor drew my blood...found out I was near dead...not a panic attack! Thats why I'm leary of going to the doctor!
I had very good doctors before my insurance changed over to Providence health "care" system.....now I'm without a good doctor except for the pain clinic...I did call them about my PN spreading....my clinician is out till next week, so can't see anyone till then....oh well.
Yes...I know that type of medication takes time to titer up in your blood. I was once taking Morotin...but had too many neg side effects from it.
I do hope this is my body making repairs. I've been faithfully taking my vits and minerals...so perhaps this is only repairs being made.
Thanks for your input. Cheryl

[rose]

It is common for people who have significant damage to experience improvement after days or weeks and then to experience temporary worsening (and even perceived increase) of symptoms (whether predominantly sensory, mortor, etc.) as difficult repairs are worked on.

Regardless, it sounds like the doc doesn't understand the difference between obtaining some relief from pain and "addiction." What does the doc think Oxycontin was developed for? (rhetorical question)

rose

[Traveler]

Cheryl,

I am concerned about you and wish we could help. I think someone should evaluate everything you are taking, including all of your supplements, dosages, etc. Perhaps you are taking too much of something. e.g. too much vitamin B 6 can cause neurological damage. Keep it to 100 mg. or less per day and the P-5-P type is best. I think a lot of us fall into the temptation of thinking that if a little is good, more is better. Sometimes maybe more is better, but not always. (Just my 2 cents worth.)

Traveler

[Cry Tears]

A Dr Robt Grimm in Portland Oregon this Tuesday. He comes very highly recommended and takes "odd ball" type neuro problems.
My Endocrinologist feels he may have some answers on my health issues.
On top of the Sublingual Methly B12, I'm injecting 1,000mcg of the Cynocobalamin. Yes...they're painful, always leaves a bruise on my leg, but this extra seems to be helping as the PN all over my body is easing just a tad.
ALTHOUGH...the PN is all over my entire body...at least its not high pain levels as it was last few weeks. So my problems must be tied to the B12.
I'm also supplimenting with a liquid oral vits and mins they carry at Costco (Warehouse type stores)
This Neurologist will be seeing me for a 2 hour consult and is out of network caremark system....so I've got to pay out of pocket.
I warned his staff that I would NOT tolerate any dismissive roll-eyes behavior and would NOT pay if thats what I received.
They promised that he does NOT do this to people and has helped many people find answers to their issues.
So I am somewhat hopeful...but we shall see.
Mayo Clinic was wonderful....but at the time I saw them my PN was back to normal after being on the MethlyB12 only 2 months. This was confirmed with EMG and NC testing. One done 4 months prior showed Moderate sock glove pattern of PN. Why did it go back to normal that quickly? Methyl B12, Jarrow Brand, 5K mcg a day!
My Crohns has been acting up something feirce the last few months and I'm needing ANOTHER bowel resection any time now because of inflamed intestines and scar tissue from the other 2 resections/past surgeries, so far I've had 7 laparotomies so far....I just know how to have fun!
Thanks for all your help and input....please keep my husband, Larry, in your prayers, he had tongue cancer when he was only 36....its coming back again...its been a very long battle for him and he's really battling this tumour that is precancerous but keeps growing back within a week after whacking it off, 3 times now in 2 months....he doesn't smoke,drink or chew...just an odd fluke he got deadly from of mouth cancer, treated with radical surgeries and radiation treatments.
Thanks again, Cheryl

[dahlek]

fingers for you on Tues.

Yes, this doc may be out of network, but maybe, just maybe.. he will be able to put some of the pieces to your puzzle together.

Keep it all glued and duct-taped together untill you get answers! I like the brite green [duct tape] myself.

Hugs - j