Today My Doctor Said he Was Lost
 

Just came from my primary care doctor, he said he was at a loss and could do no more for me other than refer me to pain management, I told him that I did not want to live on pain meds the rest of my life, three years now I have had burning pins and needles and sharp stabbing in both feet and hands, gets worse at night and during hot weather. I was diagnosed with hemachromatosis a year ago and undergo frequent phlebotomies to control iron levels, Nerve conduction and emg were negative, RA factor neg, blood sugar normal, red cell consistently 17 to 19, heavy metals negative, I have about run out of options but do not want to live on pain meds, has anyone else experienced similar problems and what can be done for neuropathies of this sort. any advice would be appreciated.

well I have the tingling pins needles, but no dx, but I am on neurontin, I had dealt without meds for this for long 8 years. I can not deal anymore with the tingling pain i was in during heat or humidity. I am on meds, also on baclofen for spasticity. sorry no info for the tingling pain, as I did not find anything before meds to help that, other than avoid heat. But I could not avoid humid days, and that is when I felt worse. OH other than pregnancy that helped, never felt tingling at all with pregnancy. hugsss,sarah

Right off? WELCOME!
 

We all have different neuropathies, but I urge you to wade thru the 'Important Links' at the top of this forum. Some sites mite not be active any more, but many there are very valuable in terms of learning about PNs of all sorts. You do have to sort of learn a new medico language to understand it all tho...IF I can do it, anyone can!

You are both brave and bold and concise in your first post here...It's hard to summarize your life's pains so shortly.

I have to say that I admire your primary doc for actually admitting he's stumped! So many docs have simply blown folks off as 'mental' or the like. NOT!
Did he offer any ideas as to whether you see a rheumatologist or a neurologist for the blood and numbness issues? IF not, call his office and ASK!
Nothing ventured nothing gained...unless you are in a very restricted medical plan... Three years is too long to go w/pain.

As for Pain meds? They can and do serve their purpose and have a place in our lives. Put another way? IF you had epilepsy, cancer or a heart issue, wouldn't you take those pills each and every day...faithfully? Side effects or no? Pain meds can and do help us get by and have a better quality of life, key is finding the right combinations. And, do pay attention to Mrs D's writings about vitamin and mineral supplements! These all help to work in concert as to helping whatever is going wrong with our complicated systems.

It also helps to read past posts and learn about the folks who share here. Do not ever by afraid to ask questions. We mite not have answers [we are after all, merely 'patients'] but we've all learned a lot along the way!
Hope always! :hug:'s - j

And--
 

--even though you've listed a number of test results, I doubt you've had a number of the tests that should be performed for those with neural symptoms.

It's good that you've had heavy metals checked, but beyond the blood sugars, have they done any other metabolic (i.e., thyroid) tests or extensive autoimmune tests that are not anti-nuclear-antibody (ANA) related? (Too many doctors seem to stop if ANA is negative--even rheumatologists.)

There is a wonderful spreadsheet at www.lizajane.org that lists tests for neural symptoms in a spreadsheet format (for tracking results over time, among other things); you may want to look at this and see what you've had to this point. (A number of us worked on this with the originator, who also posts here.)

There's also this list of initial serum tests from Quest diagnostics:

http://www.questdiagnostics.com/hcp/...eralNeurop.htm

And, yes, reflex sympathetic dystrophy/complex regional pain syndrome should be considred:

http://neuromuscular.wustl.edu/sensory-pain.html#rsd

There are food triggers too.

Gluten--going gluten free may help

Nightshade family (potatoes/tomatoes/peppers)
http://www.deliciousorganics.com/Con...nightshade.htm
I get burning feet from potatoes. I can eat fresh tomatoes but some sauces set me off.

Monosodium glutamate is a neuro excitatory chemical. It stimulates NMDA pain receptors. It is very common and in many processed foods.

Histamine releasing foods:
This is one list...if you Google it there are others:
http://www.urticaria.thunderworksinc...whistamine.htm

If you have genetic errors in metabolism... B12, folic acid may be not activated for use in your body. There are DNA tests now for this.
Or if you are low in thiamine, take drugs that deplete it or have errors in dehydrogenase enzymes, then taking extra or the new version benfotiamine may help. (Doctors don't know this as a rule).

If you took drugs (statins and some antibiotics) in the past, you may have damaged mitochondria, leading to damaged nerves.
Supplements for this are acetyl carnitine, CoQ-10, biotin, and r-lipoic acid. Doctors don't know this commonly either, but it is in the research.

The research into mitochondrial failure is just beginning. It is here many people are found with chronic illness. We will see much more of this in the near future.
http://neurotalk.psychcentral.com/sh...t=mitochondria

Thanks for all the information and concerned replys. Most recent test were C-Peptide 3.1, CMP glucose 86 urea n20 10 creatinine 1.0 sodium 141 potassium 4.8 chloride 105 co2 27 calcium 9.5 protein 7.6 alb 5.0 glob 2.6alkaline phos 107 ast 25 alt 26 , I have been to two rhuematologist the first did a whole work up and said I had RA even though the results said neg, put me on celebrex, plaqunil and burned my stomache up over seven months, went to another did all the same test said I didnt have RA and sent me back to my primary care Phys. Hematologist did same test and and and mass red cell test , gene test for iron mutation and put me on phlebotomys, now I at a dead end and waiting till may to see a neurologist.

Do you have hemochromatosis? Getting phlebotomies for that?

Yes was once weekly now dpown to every six weeks, also given lyrica 500 mg daily

How was your blood sugars tested ?
Some docs go by an overnight fasting glucose test which can be useless, as the body has a lot of hours to get rid of any excess glucose, I know some diabetic 2 people that have been classed as normal with an overnight fasting glucose test but with a 2 hour glucose tolerance test has found them to be diabetic, just a thought.

Brian :)

last test was overnight fasting sugar at 86 doc say's ok no diabetes