[_dreamer_]

Through skin biopsy, other tests? What's your pain level like most days? Are you able to function pretty well? Just curious.

[zkrp01]

Originally Posted by _dreamer_

Through skin biopsy, other tests? What's your pain level like most days? Are you able to function pretty well? Just curious.

I had been in a car wreck and thought maybe damage to spine. Had Conductivity test plus Mylagram and the doc said Periferal Neuropathy, go home and lose weight. Said he would refer to Bariatric surgeon if I wanted. Had muscle wasting and pain level bad enough to use Hydrocodone for pain and Ambien for sleep. Had used walker for about six months, not now. No pills now except for Tylenol/w/Codein. Legs much better but will not recover 100%.Can walk about 100 yds and thankful for that. Good Luck, Ken in Texas.

[northerngal]

many labs, nerve biopsy, emg/ncv, mri, spinal tap, more and more labs, long list.......unfortunately a diagnosis with PN seems to be a matter of ruling out numerous other things.
Every day functioning okay thanks to AFO's. I work full time, drive, walk, exercise, clean house, shop, garden. Most people that don't know me do not know there is anything wrong, as I always wear pants to cover the AFO's.
Things I miss and are not able to do, ski, running, hiking, waterskiing sports.
I find standing in one spot without something to put my hard on for balance difficult too. So going to movies, concerts, places with buffets lines etc are hard for me. As well as outside places where there is not always something to use for balance.
I prefer to shop in places where there is a cart, much easier for me.

[mrsD]

I had EMG testing in my arms when I was pregnant.
This showed 80% loss of function in my hands.

[melon]

Originally Posted by mrsD

I had EMG testing in my arms when I was pregnant.
This showed 80% loss of function in my hands.

I haven't even had that or a nerve conduction test , and my muscles do not respond at all to rehab i.e. the joints just get worse because of the added strain caused by lack of response . It seems now also after a PT exam I have Hyper mobility Syndrome too . My feet are swollen constantly and purplish which I am trying to argue is possible PN - but my shrink / doc say otherwise its because I,m not weight bearing ( I am disabled ) though they think its because I have delusional disorder / belief of Ehlers Danlos( look up DSM 5 - long stry ) . This however can no longer be the case with evidence of hyper-mobility all over my body and the fact HSM .JSM is an underlying feature of EDS so I'm hoping it will discharge me from where they've had me locked up for 3 months. In meantime I'm tying to find any excuse I can to show I have pn so I can prove that they rehab they 're trying to force me to do would not only having no effect but also be dangerous to my HMS condition.

[MikeK]

My story is on my signature line.

I've had 4 EMG's, multiple MRI's, countless injections (epidurals, other joints) but it wasn't until I had a mylogram that the Dr. understood why I was in so much pain. When my back would start screaming the pain in my feet would be magnified making me miserable.

It's been 3 months since my spinal fusion (L3-4-5) so much of the pain is gone it is amazing.

I still have neuropathy in my feet and still take Gralise, but this is the best I've been in almost 5 years. I've tried to reduce the dose, but wasn't able to but the doctor thinks in time I should be able to.

I'm sure my story will be different than most especially since I'm experiencing relief.

[janieg]

Idiopathic SFN based on symptoms and ruling out major causes of SFN with four MRIs, several rounds of bloodwork, and a spinal tap. My neuro didn't think the punch biopsy was necessary.

I'm better than I was last year when diagnosed. Possible reasons are less anxiety about it, better diet (low sugar/processed food), supplement regimen, shift in hormones. I don't take anything for pain now.

[Ragtop262]

Still waiting on a diagnosis. Had MRI's of Brain and all 3 sections of spine, EMG/NCS, countless blood tests, probably a dozen general neurological exams. Nothing abnormal found. Between 4 different neurologists, all they will diagnose me with is "disturbance of skin sensation". The neuromuscular specialist said skin biopsy was not warranted. My general neurologist said testing has reached the "point of diminishing returns" for me - so he's not recommending anything else. (All he wants to do is provide symptomatic relief through medications.)

My primary doc is the only one to actually say my symptoms sound like an ideopathic neuropathy. But again, that was not an official diagnosis.

[DejaVu]

I have gotten may breaks through residents at a teaching hospital. They have taken more time with me, more time with my chart, etc.

After many years and tests and getting nowhere, a new resident came to the outpatient clinic and he knew I'd needed a skin punch biopsy asap. He did the biopsy. A specialist from Washington University came to see me at this location, to examine me, after having seen the biopsy. The attending docs here, whom had known me for years and could not sort out the problem, then went on high alert and started to order more tests, sural nerve biopsy, etc.

Years later, when I was additionally diagnosed with myotonia, this was due to an astute Resident having seen me in the E.R.-- unable to walk, unable to use my hands, difficulty breathing, etc. I was in a severe flare of myotonia. The ER docs were lost and were sending me home, again. I had presented at the ER many times, often weekly, in this condition and they just kept sending me home. (It was clear I was extremely impaired. I was in a wheelchair, my husband had to dress me, had to hold any water for me to drink, fed me, had to move me onto the bed, had to adjust my pillows, had to do everything for me.)

I had refused to leave this time and told them I needed to see a neurologist. The resident came to the ER and had recognized the signs immediately. He asked to be assigned to my care. He had studied the past 20+ years of my medical chart and made his case to the Attending Physicians. He had pushed to get the testing done, etc. Confirmation was made, repeatedly, through neurophysiology lab testing with the Chief of the Neuromuscular clinic, a specialist in myotonia.

I am grateful to strong-willed intelligent, insightful Residents, as they are often taking a chance when strongly differing in opinions with their supervising doctors.

DejaVu

[v5118lKftfk]

Had very early ovarian cancer, in the middle of the night the day after my very first round of chemo (carboplatinum & paclitaxel), set in very strong, decided to stop chemo early, have had it to varying degrees ever since.

... caught the cancer so early, perhaps never needed the chemo in the first place.

Natalie