So I have been having problems for years. Only now can I look back and see it.

So right after my daughter was born 6/09 I noticed my left foot was very numb to the touch. My FNP got me in for a MRI right away...after it was done and she got the results she said that she was afraid I had MS but it showed I didnt and wanted me to see a neurologist. I went and she looked at the MRI and did a couple of in office tests said I had neuropathy and sent me on my way. No other tests, no follow up, etc. I didnt think it was a huge issue because there was nothing more and I didnt have my laptop at the time to look it up.
I got pregnant again shortly after (accidently) and during the pregnancy and right after her birth I noticed more numb areas and I had been in a lot of pain since my 4th month of pregnancy. During this pregnancy I moved to a new town. I still complained of the pain but I could only take tylenol 3. Sometimes it helped and others it didnt....but never did the pain go away it would just get bareable sometimes. After my second daughter was born I found a new dr in town.
He started with a CBC and refered me to a Neurologist in Tempe, AZ. The CBC came back that I was clear on diabetes (runs in the family) but there was one count that was elevated so he had me go in for more blood work and said he was checking for Gout, Lupus, RA. I will find out the results on Friday when I see him next. My trip the the Neuro was basic. I told him about the MRI and what was going on. He did some in office tests which I failed horribly. One of the test was if I could touch my nose with my eyes closed....it was really bad. He scheduled a EMG and I had that done yesterday. Thats when he told me that it was in fact Peripheral Neuropathy. I could not go on the medication because I am breast feeding. I have a follow up in 6 weeks and I will have the baby on a bottle by then. I started weaning her today and she took well to the bottle even though she did not have bottles at all. I am sick of hurting all the time. It hurts to get down and play with my older daughter. It hurts when I hold the baby. It hurts when I wake up.....takes me almost 3 hours just to be able to get around. I now know why I fall all the time...so therefore I do not carry my little ones. If I walk a couple of blocks it takes me 2 days to recover. At least I know why now though.

I am so glad to find this forum. Everyone here knows what I am going through. I just feel like I am whining all the time these days and noone really understands. My husband is really supportive but he thinks I can just push myself to do more walking and it will get better but how can I if I hurt so bad for days afterwards? So for now I am just taking it day by day until I see him again.

Welcome to our board.

I have a few observations:

1) get a B12 serum level blood test and see if you are below 400.
Do not accept "normal" from the doctor. Get the actual numbers.

2) also get a Vit D level when you have the other test, and make sure it is in the 50-80ng range. Doctors also report normal on very low levels.

3) after pregnancies some women have low thyroid functions, and this can result in PN. So this needs to be tested for.

Other things to look at are autoimmune diseases, like myasthenia gravis, lupus, RA. These may flare after a pregnancy.

You've found a GOLDMINE of info here!
I'm sorry this battle is robbing you of your precious time with your babies, but don't lose hope. PN can be a long arduous journey by process of elimination of endless testing.
Listen to MrsD!! She just gave you the nut-shell breakdown of things to target (Thyroid is a BIGGY!)......a shortcut that, had I known about at the time, would have saved me about 5 office visits from 3 different Drs! I'm so grateful I found this forum!

At the top of the page is a very important section, if you haven't seen it, PN supplements, etc.......this info can be a very valuable tool as you wait for outcome of diagnotic tests. These are things you can do to improve your quality of life as you wait for answers.....and don't be surprised if you get the big 'idiopathic' stamp put on your file......meaning no one knows the origination of the PN. To this day, I still have questions, but have made it a priority to do the best I can with the resources I've got.

Glad you're here....
It's a wonderful family
Rae

So sorry to hear of your problems , but that is exactly how my PN started. One day my foot felt as though it was on fire. Slowly but surely it has traveled up my legs it almost feels heavy and very tight above my knees. I have trouble walking also, I dismissed it for a few months because I had recently had chemo and radiation and spent alot of time in bed. Today I walk with a cane , cant walk the mall and have a horrible time sleeping, my legs keep me up most nights. I see a neurologist and take meds, they still dont help , just make it livable ... Have you had a EMG.

There are some studies showing acetyl carnitine helps with Chemo induced PN. It is best taken while having the chemo and directly after. But you can still try it now, as there is nothing to lose and everything to gain. This is over the counter, and easy to tolerate.

http://neurotalk.psychcentral.com/post507671-2.html

and
http://neurotalk.psychcentral.com/post653568-5.html

Thank you Ms D, I have already spoken to my oncologist, she told me once the outer layer of your nerves are damaged this will not help. It has to be taken prior and while getting chemo treatments.
I am a redhead , I have had some weird allergic reactions to many of the meds they put me on.
One chemo treatment I was rushed to the hospital, my entire face was swollen , my lips eyes etc.. It is my belief that this is when this started, after the allergic reaction I had little nerve pulses in my legs and they would jump for no reason..

Thanks for the advice

Like I said, you'll have something to gain and nothing to lose except some $$, and that is not very much!

If it were me I'd try it anyway... wouldn't it be interesting to prove your doctor mistaken? It has happened you know!

All I could find on this "stripping myelin" question was that
chemo interferes with carnitine metabolism. Carnitine works in the mitochondria of cells where our energy comes from.

I'd wonder if you disturbed the axon cells, they would be unable to provide repair to the myelin, and perhaps that is the connection? Restore the metabolism and you might repair. MS patients have been known to remyelinate once damaged.

But it is your decision after all... this supplement is very easy to tolerate with no significant side effects..not a risk in any way.

Thank you so much for your replies.

I will definately be asking for those numbers from my tests on Friday when I see my primary. At this time I will find out the results of my next set of tests....Lupus, RA.

He had said that my thyroid was normal but I will double check with him that he actually tested it. I dont honestly remember. Thats another thing I am fighting with....my memory.

This whole thing actually started years ago....maybe 10? I can look back and see it now but no insurance = no caring dr's. Thank goodness I have insurance now.

I am sure I will have tons of questions so I hope I dont overstay my welcome.

Just to let you know the drug ROSIGLITAZONE [for diabetes] has today being banned in Ireland re heart safety. regards

In Scotland as well.