[DanielR]

Hi everyone,
My name is Dan and I'm new here. This is my first post. I would very much appreciate your opinions on my case and point out the possible options I have moving forward.

First I'll outline the onset of my alleged, not fully diagnosed idiopathic polyneuropathy, then I'll give you some interesting background factors.

Also, I'm from Sweden, I'll misspell stuff and be grammatically naive. Bear with me, be patient, please.

Onset
Ok, here goes. A year and a half ago. I'm on vacation with my family. Two weeks on Crete in Greece. Life is great, except my reoccurring lumbago has just hit my lower back in as bad a way I've experienced for 15 years. I can walk, barely. I medicate with painkillers and booze. I know it'll pass in a few days with the correct exercises I've come to learn over the years. In the evening tuck up in bed as comfortable as I can, binging Netflix and cheap Greek beer.

Waking up the next morning I'm totally numb on the soles of my feet and the palms of my hands. Overnight. From 0 to 100%. WTF?

Ok, I'm not the panicky type. I figure it'll pass. I reason I've laid in bed in a strange, still, sarcophagously manner and it's a manner of like a blood-vessel thing. I rub my feet and hands, nothing change. It's still, well, a total numbness, like wearing thin socks and gloves.
But it doesn't hurt. No pain at all. Just numbness. A few days pass. No difference. I do not bother going to the Greek resort-doc. We fly home after our vacation. Same same with my, for me, curious condition.

Back home.
A few weeks pass. No change. Ok, I'll call the doctor. Eventually lands at a neurologist. I take the bloodwork, spinal and brain x-ray – all negative. I do the neural speed thing at the neurologist – mixed results, nothing out of the ordinary. I get a preliminary diagnosis: Hereditary idiopathic neuropathy. The Neuro wants to wait a while before he proceeds with any meds or other stuff.
We're now in like November last year, 2016.

Health care turmoil & other developments.
I switch jobs and get a different health care plan. After a lot of back and forth they decide that my condition is not eligible for their plan. To make a long complicated bureaucratic short, I've yet, the last year, not seen a new neurologist.

Now, the conditions did stay the same, then during another back pain episode, the numbness progressed during a few weeks to, for lack of a better term, moved "deeper" into my soles and palms. The numbness also, during a few weeks, began to cover my feet, toes and half way up the knee. The hand and arms saw the same progression during this time span. And has, since then, stayed basically the same.

Also, during a bad cold I, out of the blue, got numbness in very specific parts of my face. Part of the chin, cheek, just touching the eye, back over the ear and the scalp. All on the left side of my face. It came overnight, and has stayed the same since. Again, no pain, just numbness. But not as pronounced as my feet and hands.

It certainly seems these episodes of back pain, and disease in general, maybe just inflammation, speed up the progression and spread of the numbness.

Now for a bit of background.
The information in the background may, or may not, have anything to do with my condition. I'm not qualified to discern that. Seems to me it's deceptively easy to read in all kinds of stuff in backgrounds. My neurologist, of course, asked a lot of questions, but didn't find any of it real useful, I think. However, some of you may find it interesting.

I'm 47, male. Wife, three kids in the early teens, cat, house, a job I very much like. And very happy with life. No other conditions, no allergies, no psych thing, no nothing really. I'm not an alcoholic, and I don't do drugs. Have not called in sick one day for the past 15 years.

As for my back, I suffered quite a nasty blow to it back in the late 90's playing American football, (yes, we do play it over here, not many of us, but still). It rendered me quite horizontal for a couple of weeks. A lot of herniated discs. I did get upright but for 15 years suffered backlashes like 5 times a year. The last 10 years it's been much better, the number of times a year I get it is more like 3, plus I recover a lot faster. The McKenzie method has helped me a lot.

More background.
Now, reason I mention this is that a real bad *** back pain came as I was on that vacation. And on the peak of that experience I woke up with this condition.

Also may be worth mentioning, since that initial trauma, I've had a few numb patches on my thigh. And, all my reflexes are gone. None whatsoever. And, since then, a slowly progressing Ulnar nerve numbness in both hands, up to a point that my pinkie and half of my ring fingers are very numb. I've never bothered to go see someone about it since that doesn't hurt either.

Other background includes that no one in my family or close relations suffer from np. One of my daughters do have immunological conditions, including celiac disease and hypothyroidism. Other than that, not much to talk about. My relatives are generally a healthy bunch.

My own thoughts and any advice?
So, there it is. I've yet to receive a diagnosis. I've yet to receive any treatment options. I've yet to receive any information regarding anything basically. Just sort of a "meh", and "I'll try to send you to a neurologist" and we'll see and "gee, I don't know".

This, IMHO, is hardly satisfactory. I've come to understand that if, which seems the most likely, I do have some sort of neuropathy, I'm lucky in the respect that mine does not hurt. My feet are swollen and eerie in the morning, and my hands are quite stiff, but it doesn't hurt at all. But, I think, may not always stay that way. And I think it would be quite sad if there actually is a treatment I can try or something I can do, and I just don't do it for lack of knowledge about it. Also, drawing from the history of this thing, doesn't seem to go away by itself. On the contrary, it does progress. How far? I've no idea.

To me, yes, that hideous vacation back pain certainly correlated perfectly with my onset of this condition. Very much so. Did it cause it somehow? I don't know. What I know is that I went to sleep with painkillers and booze to escape the pain in my back, and woke up with this.

And I know that I on two other occasions, during another back episode and a common cold, the condition got markedly worse. And we have a cat that we every other week pluck tics from. So a few months ago I took a blood test regarding that. Which came back negative.

You guys have any ideas on what this is? Any piece of advice to move forward? I would very appreciate your opinions.

Thanks in advance,
Dan

[Littlepaw]

Hi Dan,

Sorry to hear what you're going through. It is certainly worth running down any possible causes of your symptoms. If there is a mechanical cause a wait and see if it worsens approach isn't always best. I wanted to clarify your work-up. When you say spine and brain x-ray did they do an MRI or CT? and the neural speed thing at the neurologist, was that an EMG or nerve conduction study? If you have not had these tests done they may contribute helpful information. If I had your history I would certainly want to 100% rule out any radiculopathy, compression or cysts that need treatment. You might consider a visit to a spine surgeon for further work-up or rule out. They might be more "mechanically" minded than your neuro.

Your English is stellar by the way...

I hope you find relief and healing soon, LP

[kiwi33]

Hi Dan

Welcome to NeuroTalk.

One thing that you wrote struck me: "Hereditary idiopathic neuropathy".

Do any members of your extended family have similar clinical signs to yours? If so, you could contact them and find out what clinical investigations (including genetic?) and treatments they have had.

You could then (with their permission of course) pass that information on to your health care team - that could help you.

All the best.

[DanielR]

Littlepaw,
Thanks for your reply and your advice. And yes, I should've of course clarified my work-up. It sure was an MRI and CT scan, plus a nerve conduction study. No tumours, all fine in the brain and spine. Some compression in the lower back, which I've had for years.
So it's still sort of a mystery how the symptoms appeared over night. And I'm not sure if the patchy, episodical progression in symptoms are consistent with np, nor if it's consistent with "just" tactile numbness. Seems more like, to a layman like me, neuroborrelios.

[DanielR]

Hi Kiwi and thanks for your reply.
It struck me as strange as the Neuro said "Hereditary" since no one in my family, extended or otherwise have had these problems. Seemed more like a placeholder he just said to make the thing longer and more trustworthy
Also, I believe he said Polyneuropathy.

[glenntaj]

But it doesn't sound like you've had anywhere near a thorough work-up for potential causes here.

There are acute onset, body-wide neuropathy onsets--I myself suffered through one in 2003--that can resemble Guillain Barre syndrome, but have mainly sensory symptoms. The problem, from what you're describing, is that such an onset may have symptoms that are mimicked exactly by sudden trauma to the brain or cervical spine (cervical spine compression that affects the spinal cord may cause symptoms not only in the shoulders/arms/hands but all the way down the body into the thighs/calves/feet).

Do you happen to have access to any of the reports of your imaging (MRI, CT) and/or nerve conduction studies, or any other testing? (You probably should have these anyway, to keep for your records.)

I, too, am curious as to why the first person indicated you have hereditary neuropathy without, apparently, any genetic testing (unless there was some in there you don't know about).

I would take a look at the following, as a guide to possible testing for causes of neurologic symptoms:

Liza Jane's Neuro Lab Sheets

Laboratory Diagnosis of Peripheral Neuropathy

Polyneuropathy Differential Diagnosis

[kiwi33]

"It struck me as strange as the Neuro said "Hereditary" since no one in my family, extended or otherwise have had these problems. "

Dan, I am very glad to read this .

I wondered if the neurologist might have wanted to rule out Familial Amyloid Polyneuropathy, which occurs in some Swedish families.

It is what geneticists call an autosomal dominant condition which means that if either of your parents has it there is a 50:50 chance that you will as well. It has a poor prognosis so it is great that it has been eliminated .

[Healthgirl]

Have you had a full autoimmune work up? Celiac runs in families and it can go straight to neurological problems with out digestive issues.
My full body neuropathy also started with horrific neck pain that I woke up with one morning and couldn't move my neck. With in 2 months it spread through out my body. So in cases like ours, I believe something was underlying and the final straw just put the nervous system into a crisis. I also was very strong, worked out every day and was happy. Don't know what the hell happened.
Be careful dulling the sensations with alcohol- you could have a metabolic issue that is causing the nerve damage and alcohol is a neurotoxin....believe me, I wish I could have a glass of wine, but I can't anymore.
I recommend going to an endocrinologist, and a rheumatoligst. Maybe even an infectious disease doc.
With out checking for genetic mutations and no family history of this, saying its genetic is useless and unfounded.
If your daughter has autoimmune diseases that would be the more likely path to follow once something structurally wrong is ruled out. Autoimmunity hits at any time, any age and runs in families. It can be triggered by a virus, or environmental exposure or pathogen. The thing about autoimmunity in families is that one will have ms, one will have crohns, one will have RA... and so on. It doesn't manifest in the same condition per say.

[DanielR]

@glenntaj
Thanks a lot glenntaj for the advice. Yes, I should get more thorough work-up. And no, I don't have access to my MRI's and CT's etc. And thanks for the links.

@kiwi33
No, thankfully it does not seem to be FAP. (Which I've also, thankfully, had not heard about, or I'd be really scared before I knew.)

@Healthgirl
Great advice. Thanks! And sorry to hear about your condition. And yes, it's quite possibly some sort of autoimmune respons. I tested negative for Celiac back when my daughter was first diagnosed. But has not tested for anything else autoimmune-related.
And I will definitely be careful with the alcohol, thanks. I've even stopped taking the anti-inflammatory pills when the back pain flares up.