Slidding over from Brainpastry..So frustrated!
 

I'm always told to find the "right" doctor. I went to a neurologist who said I had PN. I went to a podiatrist who said that there was no way I had PN and it was morton's neuroma. I the skin biopsy...the spinal.....the EEG....nothing demonstrated that I had PN. No stocking and glove feeling. Just "crappy" feet from the balls of my feet to the toes. It has been that way on and off for over two years. Never the top of my feet...nor has it moved up or in my hands. The surgery stopped the electrical shocks, but there are days where my feet are just numb at the points of surgery....and days like today....I couldn't wait to get home and take off my shoes and put on my birks....Take neurontin....take Lyrica...but....if it isn't PN....what am I doing?

I'm sorry you still have bad foot problems.

All I can add to possibly help at this time is to re-refer you to Liza Jane's charts at www.lizajane.org . Maybe looking them over will give you some ideas.

Jakatak,

This is a just a thought, but, is it now possible that you have nerves in your feet that were damaged by the surgery??

I have PN caused by a blood condition. I have hand-and-glove numbness and also pain. Effexor XR or Cymbalta works on the pain for me.

Have you discussed with the neurologist WHY he/she thinks that you have PN??

Good luck. I know how frustrating and life-altering pain can be.


Barb

Hi Jakatak & welcome to Neurotalk, i can remember your case from the old forum, they said you had a Neuroma in each foot, i had thought once you had the op you would have been ok by now, but i am sorry to read that your still having problems.
Its easy enough for doc's to say " find the right doctor " when they have no answers themselves, i had plenty of that crap off GP's & specialists until i did find the right doctor who did fix my PN.
Are you seeing or did you see a neuro that is a PN specialist ? or just one of the others that just claim they know all about Neuropathy, it can make a huge differance.
I know your been trying hard for a long time for answers, i hope your luck changes.
all the best
Brian :)

It is difficult
 

It's nice to see so many familiar faces. I can talk to my wife and talk to my family. But, as I'm sure you guys know....it isn't the same until you can talk to people paddling in similar boats. If I had a botched neuroma surgery...and I have what is called a root nerve condition, I'm sure the original surgeon won't admit it. My first Nazi neurologist was very quick to tie in the MGUS with my neuropathy and I might as well just get used to watched my body slowly inch toward a horrible cancer. Multiple Myeloma. I wish there was a brass ring....a definable cause and effect. I have decided to corral my tests from the original neurologist....haemotoligist....gp....and attempt to work with one neurologist to continue the experiementation of "what's wrong with Jack!"

Jak - learn and get a little ....
 

empathy here....Before Thanksgiving I did one of those 'falls'. Went to the 'Urgent care' rather than a hospital ER to shorten [?] the wait time...took only 5 hours instead of the ER 10+? Because of the 'balance' issues, fell, and at first diagnosed w/ a fractured knee cap. Later another fracture was found on the other side. POINT? I was asked what my pain level was.
Response? I refuse to do 'Happy faces' They have NO relevance. I KNOW this pain is short term [?] but compared to the PN 'ONSET', doesn't exceed it, BUT is near...

For me, now, what should be a '10+' is well, commonplace. I don't try to think of the pain, or lack of same. The lack of pain, either thru blocks or nerve-severing is in most cases un-acceptable,because it is a safety hazard. ESPECIALLY IN THE FEEL. Again, in my own case, I CHOSE to be explicit in my own Mastectomy instructions to my specialist surgeon were that I DID NOT want to have to experience 'intermittent nerve-regrowth' as an aspect of aftermath of my surgery. Imagine, the zeeps zaps and PAIN in other areas? In the feet, any feeling, even pain, is a GOOD thing, that I can FEEL is one heck of a safety measure.

There are no quick fixes - only decisions and the consequences to live with...Hopefully all the ramifications were informed. - j

Here's the whole kitchen sink....sorry if it redundant
 

I have neuroma surgery on both of my feet last year. I did this because it was, in my mind, the lesser of two evils. I surely didn't want to buy into the fact that I possibly had Peripheral Neuropathy. Diagonosed originally as idiopathic. Which means that they don't have a clue as to the cause. I had a skin biopsy...negative...EGG (very painful) that too was mostly negative. I had a spinal...that was negative. The neurologist said I had no ankle reflex and that I also have a blood disorder called MGUS (Monoclonal gammopathy of unknown significance) this is an abnormal protein in the blood that is usually never discovered unless being testing for some other condition...like PN. It can lead to a form of cancer...but it also can mean nothing. It sure can scare the daylights out of you though when you are referred to an oncologist after the neurologist finds out about your ankle reflex being absent. Mind you....at the time I was 56 years old and 3 to 4 people out of 100 over 50 do test positive for this abnormal protein. Anyway...I live with abnormality....two podiatrists who firmly believed that I didn't have PN. I didn't and still don't have the glove/stocking feeling over my feet...nor do I have symptoms beyond the balls of my feet...or the top of my feet. But, today, after gobbling 1800mgs of neurontin at night...and 75mgs of Lyrica three times a day....my feet burn and ache and I can't wait to get home and take my shoes off. It's funny how the stress of work does seem to exacerbate the pain. Oh well....there ya go. For those that have an identified condition...treatable with surgery and time for healing....God Bless You!!

You've got MGUS :eek: Me too!!

Get that idea of "slowly inching your way toward a horrible cancer" OUT OF YOUR HEAD.

I was diagnosed in Spring 1990. It took me a few years to get past that feeling. It's hard to be diagnosed with something that may or not go terminal.

There's fantastic research going on at the Dana-Farber in Boston and other places across the country. Dana-Farber was the first place to have what they called a 'cure'. "Cure" in that instance meant no evidence of the multiple myeloma, but, she still had the m-component in her blood. Francesca Morosani Thompson actually still ended up dying from multiple myeloma in 1996.

Interestingly, at the same time that I was diagnosed with MGUS and the heartless, thoughtless, totally-lacking-in-compassion doctor from Massachusetts General Hospital told me I might or might not go over to multiple myeloma, the Readers Digest had an excerpt from Francesca Thompson's book. That was a huge slap in the face.

It took sitting down and really talking with a good hematologist and a good oncologist and seeing the numbers on the tests year-after-year stay pretty stable.

I now just get the immunoelectrophoresis done every 12 months and get my Effexor XR from my primary care physician. But, I do have an oncologist at Dana-Farber that knows me -- haven't seen him in years, but, he's good and he's compassionate.

You have to get your head wrapped around the FACT that you do not have multiple myeloma now. **NOW** is what you look at. In the meantime, there's fantastic research going on.

I wish that they had recommended periodic plasmapharesis to get the protein out of the blood. I think that would have saved a lot of the damage to the nerves. There doesn't seem to be agreement about the damage to the nerves--but, I'm living proof that it damages the nerves--that's enough for me. *I* seem to have gotten to a stabilization point as far as the damage to the nerves goes. The sensation has been pretty stable for quite a few years now. The Effexor XR works for me. I actually could not open jars before I started the Effexor XR -- it was just too painful and I didn't have the strength. Now I can do it without pre-loosening the covers http://chocolate-moose.p5.org.uk/MINIS/yahoo.gif

Stay strong. And BELIEVE. Hugs.

Barb

PS: I've actually got bookmarks: MGUS-Multiple Myeloma-Amyloidosis
(press the [page-down] key once to get to the appropriate section)

Hi Jack
 

Well, glad to see you showed up here. I was just talking about you the other day and wondering what had happened to you. Sorry, the PN is still such a bummer... I had forgotten about all of the complications...

Did you see an Oncologist after you were diagnosed with MGUS? I have the PN and MGUS too-don't know for sure if PN is from MGUS or not, but my Oncologist insists that I do not have Multiple Myeloma...

Do you think there might be any way the fabric in your socks (or its tightness) and the type of shoes you work in might aggravate the PN?

Good to see you.

Cathie

My results are so all over the board
 

Before I settled on the surgery, I had every test imaginable. Skin biopsy. Lumbar puncture. EEG. Aside from the ankle reflex...which is toast....all other tests were inconclusive....accept for that little blip on the radar....MGUS. There, again...the confusion continues. Paraprotein .1 (very small) as the haemtologist said...a freckle....she said most don't even know they have it, unless they have other symptoms. My IGA...IGG...and IGM all fall within the normal range...so why...why...why? Did all my years of drinking cause it? Why am I anemic? All B12 tests normal. Never tired or weak. But RBC is 3.9....low! It is so frustrating.