Six Months In - Not much closer to answers
 

Dear all,

Thanks in advance for reading and commenting. About six months ago I started to have a whole range of symptoms after a particularly bad virus infection (flu). Before that I was very healthy (actually ran a half marathon the week before!), never smoked, never drinked to excess.

My doctor was stumped and sent me to a neurologist. He did a very thorough battery of tests which included:
1) Blood tests ruling out diabetes, thyroid trouble, myasthenia gravis etc.
2) A nerve conductivity test
3) A visually evoked potential test
4) An MRI of both my brain and c-spine
5) Two thorough neurological exams

The result was completely inconclusive. To quote from the report that I was given: " Visual acuity wat 6/6 bilaterally with normal fundus examination. Motor examination was unremarkable with well preserved and symmetrical reflexes bilaterally and downgoing plantars. Sensory examination was also unremarkable. Romberg's was negative. Multiple investigations including MRI Scan of the brain and C Spine, nerve conduction tests and visual evoked responses were normal. A multitude of blood tests have come back normal including the inflammatory markers. We have not discovered any structural basis for his multiple symptoms."

At the end of the consultation the neurologist called in his more experienced colleague and they made a little joke about 'God only knows disease'. The older neurologist then had a bit of a think and latched on the fact that onset was related to a viral episode. In the end they wrote 'Post Viral Fatigue Syndrome' on the report and recommended no further action. Over the past few months I have been trying to educate myself about PVFS/CFS and attempted to follow some basic treatment steps. My problem is, however, that I not at all comfortable with the diagnosis. I had a look at some of the diagnostic criteria for PVFS/CFS and things just don't add up.
* I am NOT overly fatigued
* Certainly do not experience debilitating episodes of fatigue
* Do not experience post-exertional fatigue
* Experience no cognitive deficits (As far as I can tell!) :-)
I do not, in short, meet the most fundamental criteria for a PVFS/CFS diagnosis. I cannot help but suspect that this is yet another case where CFS was used as a kind of 'wastepaper basket' diagnosis for a hard case.

Anyway, this still leaves me with multiple symptoms and wondering where to next. Most of my symptoms seem to point to peripheral neuropathy (and a friend who is a specialist in internal medicine seems to concur, she lives in another state so have not seen me but we corresponded about my symptoms). My MAIN QUESTION is this: If I do have PN how would you explain the fact that the neurology exam found 'no structural basis'?

For the record my main symptoms at the moment are:
1) Burning Feet
2) Tired/Numb feeling in legs
3) Numbness/stiffness in both hands
4) 'Migratory' pain in the arms, more prevalent in the upper arms
5) General feeling of weakness in my arms
I also have some facial symptoms (any thoughts about the relationship of this with PN would be appreciated).
6) Tight painful, jaw
7) Eyelid spasms
8) Numb lips

Any thoughts/ideas would be highly appreciated. Particularly if you could suggest some avenues of enquiry and/or which type of physician I should seek out next, especially since the neurology route did not prove to be too productive.

Kind regards and thanks again for your help!

Phil

Some same symptoms
 

Hi Phil,

So sorry you are experiencing all these symptoms, I have some of those same symptoms, mine started after several viruses that I had last year, it seems I would just get over one virus and would get another one, I also had a pertussis vaccine during this time, I also had a lot of the same tests you have had, these neurological things are so hard to pinpoint. I was not satisfied with my first neurologist so I saw another neurologist out at UCLA here in Los Angeles, she ran another batch of tests and determined that I have small fiber neuropathy, that diagnosis is just a symptom of something else that she is calling idiopathic, another words she does not know what is causing the SFN, she thinks my PN may be post viral or post vaccine related, I became literally numb and tingly from head to toe within a few months, very distressing, however the good news is she believes this will resolve but may take a year or two from when the symptoms first appeared. People on this site are so helpful, I have done many of the things they have suggested especially the supplements, I unfortunately am not much better, but I am not giving up, I trust in the Lord and I also trust this Neurologist. I hope you feel better soon and get some answers. Blessings, Jan

Some PNs are molecular so won't show up on structural tests.

If some antibodies are present attacking your nerves, they won't show up because we cannot test for all of them. Many are not identified yet.

Have you had IgG IgM etc tests? Elevated antibody titres may show up as MGUS. These thicken the blood and reduce circulation to the extremities.

Facial symptoms? Did you get Vit D tested? If low there are all sorts of paresthesias that can result from low calcium effects. Vit D is low in most Americans today. I'd also get that B12 tested, when you do the D, and if you are below 400, you should start supplements for it. US lab ranges still show very low levels as normal (doctors do not keep up with this new information)...and newer studies show higher levels are actually needed. So if you test at 250, that could definitely be contributing to your symptoms.

Have you tried going gluten free? Some people absorb the gluten peptide thru the GI tract (leaky gut) and this then causes autoimmune reactions. We've had some posters here over the years who had this...and by stopping gluten consumption their neuropathy improved.

I get burning from nightshade veggies-- potatoes, tomato sauces, peppers. MSG in foods can also be a culprit.

Also current tests for diabetes doesn't really show pre-diabetic states. Before showing up in testing, a person can already be having nerve damage if they have low sugar episodes, and high insulin levels.
Getting tested for elevated INSULIN will show this...it is called insulin resistance.
from http://www.citeulike.org/user/wrs1/article/6499468

So simple fasting glucose or short GTT (2hr) tests do not reveal this.
A long 4-5 hr GTT will show the lows, but doctors are often not trained to identify this clue. If you are not high, they just dismiss diabetes, and you can then continue to have the PN.

There are over 100 causes of PN. Some are in the spine and cause compression of nerves, but many are molecular, inflammatory, or metabolic. Some are from the use of drugs and that list is growing every day. Some are from vaccines. Some are from heavy metals, or pesticides from the environment.

You can start doing elimination diets yourself. Start with sugar and starchy carbs. If you feel better then that points to impaired glucose tolerance. Go off nightshades, or gluten or any other food you crave (craving often indicates some intolerance) for two weeks, one category at a time. Then reintroduce it and see if symptoms increase.

One really has to be a detective to find answers to a puzzling thing like PN.

Have you stopped running? I'd stop running for a while and see if you notice any difference. When you run you inhale alot of pollution that is in the air, and it is now being investigated that nanoparticles of pollution get absorbed into the body and brain and cause all sorts of damage. Were you tested for heavy metals? They can be in the nanoparticles, or somewhere else in the environment.

Wow... someone else
 

Phil...
I latched onto this web site after I, too, developed symptoms extremely similar to yours. I had parvo virus b19 last June and a flu shot this past fall with the onset of small fiber neuropathy all around the same time. Won't get into all the testing... it's been exhaustive... but several consults, including neurologist, suggesting post viral syndrome too. Wondering how you're feeling now? It's been ten months for me and still hoping, with time, I will experience improvement. The neurologist said it could be a couple years... hard to believe.
Heb1212
Cathy