[Explorer]

Hi,

I'm new to the forum, but have been reading others posts for a while, I've not seen anything that exactly matches what I'm going through, perhaps I can post a short history/summary and see if this matches up with anyone else.

A couple of years ago I got my nose broken playing sport, some time after that I started getting sore/stiff neck and upper shoulder cramps/pain. I saw my doctor who suggested I get some Physical Therapy, this didn't appear to help much.

In September last year I started to get muscle cramps on my shoulders/neck, which seemed to then move onto tingling/numbness on the left side of my neck/face - an x-ray showed a straight cervical spine, this was followed by an MRI that showed a potential bone spur, next stop was a spine surgeon who recommended more physical therapy, the numbness/tingling started spreading from the left side of the face to my nose/lips, right side of the face, and then left hand, right hand, left and right forearm, tongue (both sides), and below the right knee.

The spine surgeon suggested I see a neurologist, who ran a nerve conduction test, which was completely normal - more blood tests, all normal here also.

The Neurologist recommended that I see a Rheumatologist, more blood tests, all normal - the Rheumatologist thinks this is "Small C Fiber Neuropathy", the neurologist isn't so sure because the symptoms come and go.

I've been tracking the numbness/tingling since May 2014, some days I don't get any symptoms, other days I can get 20 or more 'attacks', these can be all over the place (hands, tongue, face/cheek, forearm, right leg). I've had several blood tests that all appear normal, two MRIs (both normal) - I'm scheduled for an Autonomic test in a couple of weeks, we shall see if that turns up anything.

Until September of last year I was extremely active, playing sport several times per week, now I'm not playing at all. I have no idea day to day what's going to be numb/tingling, whether the muscle cramps in the neck/shoulder are going to give me a massive headache, or what's going to be numb/tingling next, or how this is going to progress. This is quite scary - I don't know whether the broken nose, straight spine, muscle cramps and numbness/tingling are connected, or what treatment/direction to go next.

any ideas for what might be going on?

[Kitt]

Welcome Explorer.

Someone will be along to help.

[mrsD]

There are certain vitamin deficiencies that need
To be looked at.

vit B12 should be over 400pg/ml
So get that evaluated and get the actual
Result as doctors still follow old lab ranges
As "normal"

Low vit D will cause tingling because of
Poor calcium absorption from food.
Most adults score low in this and you need
D3 and not RX D2 to correct this at
1000 IU per 10 points to raise -- your
goal should be at least a reading of 50.

Low magnesium commonly presents
With low D and lack of whole foods in
the diet. A good chelate starting at 200mg
a day elemental will help with tingling,
pain and cramping.

I am on my iPhone on vacation so look
Around on this forum as there are many
Informational threads. I can't link on
This little phone.

[Aussie99]

Originally Posted by Explorer

Hi,

I'm new to the forum, but have been reading others posts for a while, I've not seen anything that exactly matches what I'm going through, perhaps I can post a short history/summary and see if this matches up with anyone else.

A couple of years ago I got my nose broken playing sport, some time after that I started getting sore/stiff neck and upper shoulder cramps/pain. I saw my doctor who suggested I get some Physical Therapy, this didn't appear to help much.

In September last year I started to get muscle cramps on my shoulders/neck, which seemed to then move onto tingling/numbness on the left side of my neck/face - an x-ray showed a straight cervical spine, this was followed by an MRI that showed a potential bone spur, next stop was a spine surgeon who recommended more physical therapy, the numbness/tingling started spreading from the left side of the face to my nose/lips, right side of the face, and then left hand, right hand, left and right forearm, tongue (both sides), and below the right knee.

The spine surgeon suggested I see a neurologist, who ran a nerve conduction test, which was completely normal - more blood tests, all normal here also.

The Neurologist recommended that I see a Rheumatologist, more blood tests, all normal - the Rheumatologist thinks this is "Small C Fiber Neuropathy", the neurologist isn't so sure because the symptoms come and go.

I've been tracking the numbness/tingling since May 2014, some days I don't get any symptoms, other days I can get 20 or more 'attacks', these can be all over the place (hands, tongue, face/cheek, forearm, right leg). I've had several blood tests that all appear normal, two MRIs (both normal) - I'm scheduled for an Autonomic test in a couple of weeks, we shall see if that turns up anything.

Until September of last year I was extremely active, playing sport several times per week, now I'm not playing at all. I have no idea day to day what's going to be numb/tingling, whether the muscle cramps in the neck/shoulder are going to give me a massive headache, or what's going to be numb/tingling next, or how this is going to progress. This is quite scary - I don't know whether the broken nose, straight spine, muscle cramps and numbness/tingling are connected, or what treatment/direction to go next.

any ideas for what might be going on?

Hello. I am sorry to hear you are not feeling well. I have had PN almost 10 years and have read probably thousands of posts on 10 different forums. It's my opinion after much reading that PN spreads because damaged nerves talk to healthy nerves and they get sick too. This is done by way of proinflammatory cytokines. So many people say the problem started on one side and has spread to the other side or up or down without much logic behind it.

A few years ago I got whiplash in centre of my back in a MVA. Well the burning kept on spreading and spreading and spreading. I finally just gave up trying to figure out why and concentrated on trying to control pain and symptoms so I don't spiral downwards. It eventually went away. Don't loose hope. You'll be active again soon enough.

[Explorer]

Originally Posted by mrsD

There are certain vitamin deficiencies that need
To be looked at.

vit B12 should be over 400pg/ml
So get that evaluated and get the actual
Result as doctors still follow old lab ranges
As "normal"

Low vit D will cause tingling because of
Poor calcium absorption from food.
Most adults score low in this and you need
D3 and not RX D2 to correct this at
1000 IU per 10 points to raise -- your
goal should be at least a reading of 50.

Low magnesium commonly presents
With low D and lack of whole foods in
the diet. A good chelate starting at 200mg
a day elemental will help with tingling,
pain and cramping.

I am on my iPhone on vacation so look
Around on this forum as there are many
Informational threads. I can't link on
This little phone.

Thanks MrsD - I will dig out the most recent test numbers and see what they show. I started on the Vitamin D3 and Magnesium and already feel some relief from the shoulder/neck muscles.

I'm surprised that none of the doctors/specialists have looked at these numbers, wouldn't you expect that to be common practice?

I'm seeing a rheumatologist and neurologist, some of their statements appear to be contradictory, do you have any advice on who typically deals with symptoms that appear to be PN in nature?

[Explorer]

Originally Posted by mrsD

There are certain vitamin deficiencies that need
To be looked at.

vit B12 should be over 400pg/ml
So get that evaluated and get the actual
Result as doctors still follow old lab ranges
As "normal"

Low vit D will cause tingling because of
Poor calcium absorption from food.
Most adults score low in this and you need
D3 and not RX D2 to correct this at
1000 IU per 10 points to raise -- your
goal should be at least a reading of 50.

Low magnesium commonly presents
With low D and lack of whole foods in
the diet. A good chelate starting at 200mg
a day elemental will help with tingling,
pain and cramping.

I am on my iPhone on vacation so look
Around on this forum as there are many
Informational threads. I can't link on
This little phone.

I got results from an autonomic test which came back normal, along with the many blood tests, two MRIs, and nerve conduction tests (All normal). The Neurologist has ruled out small fiber neuropathy and multiple sclerosis, and from blood tests has also ruled out heavy metal poisoning and gluten intolerance.

At this point the neurologist seems to have ruled out a number of things (which is good), but appears to be at a loss to figure out what this might be (the symptoms continue). He's prescribed some muscle relaxants to help with the upper back/neck spasms, and scheduled a follow on appointment for six weeks from now to see if things have improved or got worse.

I'm not sure where to go next, or what to research next, I'd be interested in hearing your opinions, I'd really like to give this thing a name so we can start working on treatment.

[Mrs.Redman]

Originally Posted by Explorer

Hi,

I'm new to the forum, but have been reading others posts for a while, I've not seen anything that exactly matches what I'm going through, perhaps I can post a short history/summary and see if this matches up with anyone else.

A couple of years ago I got my nose broken playing sport, some time after that I started getting sore/stiff neck and upper shoulder cramps/pain. I saw my doctor who suggested I get some Physical Therapy, this didn't appear to help much.

In September last year I started to get muscle cramps on my shoulders/neck, which seemed to then move onto tingling/numbness on the left side of my neck/face - an x-ray showed a straight cervical spine, this was followed by an MRI that showed a potential bone spur, next stop was a spine surgeon who recommended more physical therapy, the numbness/tingling started spreading from the left side of the face to my nose/lips, right side of the face, and then left hand, right hand, left and right forearm, tongue (both sides), and below the right knee.

The spine surgeon suggested I see a neurologist, who ran a nerve conduction test, which was completely normal - more blood tests, all normal here also.

The Neurologist recommended that I see a Rheumatologist, more blood tests, all normal - the Rheumatologist thinks this is "Small C Fiber Neuropathy", the neurologist isn't so sure because the symptoms come and go.

I've been tracking the numbness/tingling since May 2014, some days I don't get any symptoms, other days I can get 20 or more 'attacks', these can be all over the place (hands, tongue, face/cheek, forearm, right leg). I've had several blood tests that all appear normal, two MRIs (both normal) - I'm scheduled for an Autonomic test in a couple of weeks, we shall see if that turns up anything.

Until September of last year I was extremely active, playing sport several times per week, now I'm not playing at all. I have no idea day to day what's going to be numb/tingling, whether the muscle cramps in the neck/shoulder are going to give me a massive headache, or what's going to be numb/tingling next, or how this is going to progress. This is quite scary - I don't know whether the broken nose, straight spine, muscle cramps and numbness/tingling are connected, or what treatment/direction to go next.

any ideas for what might be going on?

Hey Explorer,
I have small fiber neuropathy and the only way to dx that is by a punch skin biopsy. This seems to be the Gold Standard to dx SFN. I hope your neuro did that to rule it out. Mine did not do it right away but months later once most other things were ruled out. Like you, I had every test imaginable (all very normal) before the skin punch test was done. Otherwise, all and any nerve tests you had will only measure large fiber nerves so small fiber neuropathy (SFN) won't show up. MRI's are looking for MS if you are getting nerve-like pains (burning sensations are nerve related) or other things not related to nerve diseases.

I can't speak to the pain in your neck but that may not be related to the muscle cramping, etc. If you have a pinched nerve(s) in your neck, it will burn. I found GREAT relief in going to a chiropractor as a last resort for my neck pain years ago. I highly recommend you find one. Word of mouth is the best way. If you can afford it...GO!

When I began to get more symptoms of SFN in the beginning I had terrible electric shocks and muscle cramping and horrible sore feet. As time when by my symptoms began to expand into my thighs and arms and much more painful. I began to research fibromyalgia again. (The Fibromyalgia Network is a great place to find information) An initial visit to a rheumatologist over a year ago was a "No fibromyalgia, but nerve related" issue. Turns out he was right, but only then. As I pursued my pain issues and had appointments and tests with an excellent specialist, it was determined that I had, in fact, did have fibromyalgia along with the SFN. I had done some research on the two and the specialist confirmed what I had read: Fibro and SFN often overlap. That explained why my SFN symptoms did not match up entirely with the other symptoms (read: PAIN) I am having now. I am presently taking Neurontin (gabapentin) for my pain and it is helping as long as I stay ahead of the pain. There is no cure; just pain management.

I highly suggest you start researching and learning all you can about SFN and fibro and any other information you can get your hands (or eyes) on about various neuropathies. Hate to say...there are tons of them out there. Also be sure to get copies of ALL of your records and tests. If you have to go from dr to dr, you will be well prepared and will be able to compare any results from some of the great advice you will get on this site.

I do hope you find some answers to what is going on. It is unfortunate that so many of us have other issues and that it is often difficult to separate all of them to make sense. I hope you find answer quickly.