Looking for insight/advice
 

Hi all...I stumbled across this forum last night and I'm hoping to find some insight, advice, etc from those of you who understand how miserable this can be!

Back in April, I had a single level ACDF. Approx. 3 weeks post-op, I started having intense burning sensations around the edges of my heels. Within a couple of weeks, the entire bottom of both feet was burning. The neurosurgeon says there's no relation between the neck surgery and neuropathy in my feet.

My neurologist has done various tests: EMG and NCS on both legs/feet (mild tarsal tunnel in one foot). Lumbar CT showed a mild disc herniation which he said wouldn't be causing any issues. B-12 test was low and I've been on injections for about 6 months (tested negative for metals, HIV, etc.). At first, the B-12 injections seemed to help, but not anymore. I've been on Cymbalta, Lyrica and Effexor for the pain and none of them have helped.

The pain has intensified over the past several months. The way I describe the burning to people is "Imagine someone painting the bottoms of your feet with acid". On top of the burning, my feet are ICE COLD to the touch (also had a doppler on both legs - normal curculation). My right hand also stays cold. Over the past few weeks, my hands have been alternating with burning and tingling sensations (EMG in March was negative for Carpal Tunnel).

I feel like I'm losing my sanity trying to cope with all of these problems! To top it off, my job is at risk due to all of these appointments for more tests. Since June I've been diagnosed with PN, Raynaud's Phenomenon, mild tarsal tunnel, B-12 deficiency (last test was above average 10 days post-injection), and most recently moderate sleep apnea, severe RLS and severe PLMD. I think there are a few more, but my brain doesn't seem to be working too well these days either!

Is there anyone else out there with a similar freakish group of problems? Any suggestions on anything else that should be investigated? Of all the problems, the PN is the most frustrating because I can't find anything to help relieve the pain! I've learned not to think that the pain can't get worse...it CAN! :(

Hi Codabugg,

First, let me welcome you to NT. I'm so sorry you are having all these health problems. I also have a miriad of health problems but they are different than yours, except the PN.
I'm really sorry I can't help you but offer my best wishes to you and hope you can get to the bottom of this once and for all. I do hope it won't get worse for you.
Take care,
Linda

Hi and welcome to our forum,
I know some neuro’s say if your feet are affected they would be looking at possible lower spine pressure , and if it was your hands that were only affected then they look at the cervical area, this would be a good one for Glentaj to answer because I can remember him saying that cervical problems can affect your feet too.
Have you had a post op MRI of your cervical spine ?

I know through my own experience with B12 that I
had worsening of symptoms whilst my nerves were actually healing..
It may help if can post your first b12 reading, and then the last one you had, and how often you had the injections and over what period of time.
There will be others along shortly and they will try to help you too.
Here is a site that is worth while looking at, its still under construction but its written by our B12 expert, Rose.
http://roseannster.googlepages.com/home
This one shows all tests that can be done for PN
http://www.lizajane.org/

I would also suggest that you look at the stickies on the front page and up the very top you will see them.
Brian :)

Welcome CODABUG!
 

Brian's referred sites should be good for starters, also at the top of the PN page are a group of 'stickies' -the posts started by LizaJane are chock full of sites that will probably keep you reading till your mind fogs over. I recommend you doing about an hour's worth of reading a day. You'll be less confused that way and since neuropathies are soo confusing anyhow, mite as well do it in tolerable doses.
Neuropathies are presented in all sorts of medical conditions as well as being neuropathies in and of their own sets of conditions. That makes diagnosis a long process of eliminating other things, LOTS of other things.
www.lizajane.org does list all the tests for diagnosing PN but also relates to the tests for spinal issues that can cause PN. It's been put together my a member who has gone thru the WHOLE MILL in terms of getting diagnoses in both areas. The usual course of exams are 1]blood; 2]basic neuro exam {see www.Neuroexam.com }; 3]nerve conduction tests; 4] MRI's [to eliminate brain and spinal issues]; and last 5] more blood and spinal tap work-ups to determine or eliminate auto-immune issues. Some exam procedures require nerve biopsies but, these days many insurance companies are very reluctant to authorize these surgeries/tests as all of #'s 1-5 should tell you what the biopsies could confirm, and seural biopsies can result in permanent damage in an affected area-should your docs demand a biopsy [I HOPE NOT!] you, in turn should demand a 'punch' biopsy-but, that is a loong way down the diagnosis road.
For now, take a good look at the LizaJane lists and start getting copies of all the tests, etc., done to date to fill in the worksheets.
We all are looking forward to some progress in your diagnosis and also in some pain relief for you - keep faith, the hurt keeps our minds active and learning - Hugs! - j

Thanks for the welcome and advice
 

Thanks everyone for the welcome and advice.

As for my B-12 tests: The first one was in early July and the level was the lower end of normal - 380. I was then placed on weekly injections for 6 weeks, then monthly for 6 months. After about 3 months of B-12 injections, I convinced my primary doc to do a follow-up test. That one was 10 days after a monthly injection and the level was over 1300 - I can't find my lab results, but I think it was something like 1330.

The only other notable results from the first battery of testing was a very low positive ANA screen. This also concerns me as my family has various autoimmune disorders - mother has Sjogren's and RA...I have a cousin with Lupus. My primary only ordered a Lupus panel (which was negative), so I'm not sure what the ANA positive is. It could be as simple as the fact that I had mono when I was in high school.

MRIs - I haven't had any luck in getting the neuro to order a follow-up on the c-spine. When I went in to see him before Thanksgiving, I asked him about the possibility of MS (I forgot to mention before that I also have cognitive issues and almost constant spasms in my middle back muscles, along with various muscle twitches all over the body). Anyway, he doesn't think it would be MS, as I had a normal brain MRI a year ago when another neuro was trying to find a way to treat my tremor (which I've had forever and has gotten worse over the past couple of years). He said he'll order another brain MRI in a few months. As for the hand/arm issues, he keeps saying it is just because of the muscle spasms which are a result of the surgery.

Now, he's referring me to an infectious disease specialist for further testing...how scary is that? My appointment is next Tuesday and I am anxious to get it over with! I wish I could convince someone to go ahead and order the MRI's before the end of the year. I've already paid my max out of pocket, so everything is covered at 100% right now! Starting in January, I have a $300 deductible, then a 10% copay. :(

PN symptoms are a common complaint after surgeries. Any type of spinal surgey in any area of the spine, cervical or other, can be an issue to consider on the onset of PN.
Your first B12 of high 300's was not high 'normal'. That figure is over 20 years out of date. As far as Rose's research goes, anything under 600 is suspect. The post shot B12 readng, in the 1300's, is what would be expected. I've been taking oral methylcobalamin (1000mcg/day) for years and my B12 regularly reads in the low 1200's. (The doc notes that I suppliment B12 on the test sheets)
My neuro ordered the skin punch biopsy on the 2nd visit to confirm his Dx of small fiber PN. It did. The Sural biopsy is for other types of PN, and rarely does anything other than confirm the Dx, but can have long lasting negative side effects. The skin punch does not have any long lasting s/e, just 3 band-aids and 2 wks of healing. No scarring to mention of.

Codabugg - Its normaly pretty quite over the week ends, so i would think that you will get many more responses as the new week comences.
Brian :)

For what it's worth. My nerve pain (PN) is not a result of any spinal problems it either occurs as a result of diabetes or myelin damage associated with my leukodystrophy. MS, another white matter disease, also commonly causes PN pain. The only relief I get is from neurotin (gabapentine).

Hi Codabugg
 

I am new here and to all this PN stuff but I am about where you are in terms of being at the beginning of this whole tests and examination by Docs thing. It is very scary and it is OK to feel that way. I can't offer you much advice except to say that you need to make sure that you look after yourself so that you have the physical and emotional strength to deal with the tests/examinations, this will help you to make sure you are able to articulate clearly your concerns and ask the Docs all the questions you need to ask ( and remember what they say). I was a mumbling wreck when I saw the neuro and he went in for the kill! When I see him again I will have a different approach and I will make sure that he listens to what I have to say and ask of him.

Try to stay positive or as we say in the UK “Chin Up”, seriously - I know from personal experience how overwheleming all this is and I haven't got as many issue as you seem to have to deal with. Stay in touch

Just a thought Lupin , but it might be of great help to you to have someone with you when you see your neuro. That person can refer to questions you have on the list in case you get sidetracked during the appointment. Its tough to try to remember all you needed to ask about while you are invovled in the examination. Plus people are ususally more civil when you have someone with you.