I have never heard of SFN. It sounds plausible. You can always get a second opinion to be sure. The only difference in treatment for MS would be a medication to slow the progression of MS. Since I have had MS so long I do not take MS medications to slow progression. All they do is treat symptoms. I go to a pain clinic to deal with symptoms. My MS specialist sent me. It took awhile to come up with the right drugs. I am glad I did go to the pain clinic.
I would not accept a diagnosis of SFN without the test. It could definitely explain your symptoms. It may involve a referral to a neuromuscular neurologist, given her reticence in ordering the test.
Just in the states there's approx 40 million dx with PN, there are over a 100 different types, both small fiber and larger fibers types are associated with many different medical conditions eg
Diabetes and other glucose dysregulation syndromes (impaired glucose tolerance and metabolic syndrome), sarcoidosis, vitamin B12 deficiency, HIV, neurotoxic medications, celiac disease, paraneoplastic syndromes, paraproteinemias, HIV , inflammatory neuropathies (such as Guillain-Barre syndrome and chronic inflammatory demyelinating polyneuropathy), celiac disease, hepatitis C, restless legs syndrome, complex regional pain syndrome type I, systemic lupus erythematosus, Sjogren’s syndrome, abnormal thyroid function, amyloidosis, and paraneoplastic syndromes etc but up to 50% are unknown (idiopathic).....
"Diagnosis and Treatment of Pain in Small Fiber Neuropathy" http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/
My brother is dx with PN (combined small/large fiber), his is not an unexpected outcome for an alcoholic, he's also been a walking symptom check list for type 2 diabetes for at least 5 yrs, even though so far when ever he's been tested for diabetes the blood work say's he's not....he's had many tests done over the years but never a biopsy to confirm it.
PN is more of a set combination of symptoms than a diagnosis, Peripheral Neuropathy is commonly a symptom of '?' so before you think this is a mad hatter idea, you'll likely need more testing to see if they can find out what your underlying cause is, some causes are temporary so knowing the causation is very important!
I'd highly recommend you seek the second opinion with a neuro who specialises more in small fiber PN if that's definitely what the MS specialist believes you have, she's likely following the PN criteria but her interest and specialty is MS so you'll want to see someone who's focus is up to date on PN.
Hope that helps.....JJ
I was diagnosed with small fiber neuropathy many years ago before my ms diagnosis. It was determined to be idiopathic since all other reasons for having it are negative. I had the biopsy to confirm the diagnosis so I would seek out a doctor that will do that for you. Also had a muscle biopsy done too . I used to take lyrica it worked very well for a few years but now I take nothing for the neuropathy or the ms just deal with my symptoms. Good luck
I understand your frustration with her words. My ms neuro finally recommended my gp refer me to a neuromuscular neuro, so I understand. AT that point he insisted it was peripheral nervous system related, and not possibly ms.
Except it was. The neuromuscular neuro took my history, checked my previous EMG results, and refused to continue, sending me back to the ms neurologist. Another six month delay in my diagnosis time.
Not saying yours is or isn't -- but all this back and forth, unfortunately, is the "stuff" of diagnosing neurological conditions when things aren't textbook.
We have NO idea when we initially are told that other things have to be ruled out (or in!), just how many other things there are. And how long it takes.
In response to your comment, idiocracy, under HVAC's post. MS Specialists are positive it isn't ms, until either it actually is, or it isn't.
This makes absolutely no sense, I am quite aware.
If your neuro exam is good, it actually makes it more unlikely that ms is the causative factor. I know my ms neurologist was less than interested in parathesias, and subjective symptoms, and more concerned with weakness and actual neurological signs..
It's not about walking okay, talking okay, doing your job. It's about having enough proof, of something, so that the ms specialist is confident of a diagnosis. There are lots of folks diagnosed with ms who walk just fine, but whose mris and other tests screamed ms, and who have clinical evidence of relapse and neurological symptoms that seem to be of central nervous system cause.
When the evidence is not there yet, proof requires some sort of change, that makes the condition more clearly identifiable. Which of course, involves a wait. Limbo.
During this time, you see your gp or specialists for the symptoms you do have and anything new gets reported to the ms specialist. So yes, get the SFN angle checked out. It is or it isn't SFN -- that's more information either way.
I recommend a counselor because it's draining to live life without answers.
You will eventually have an answer. It's just difficult to wait.
Sorry i've only just noticed your additional questions...Bilateral brain lesions in only the subcortical area is most commonly small vessel ischemia, which basically shows up as small (1-3mm) non-specific MRI lesions or put another way micro vascular damage to the small arteries and commonly caused by high blood pressure, migraine, diabetes etc etc
The common causes list also includes the herpes simplex virus so both HSV-1 and HSV-2, Herpes is also associated with Small Fiber Neuropathy because Herpes simplex viruses types 1 and 2 are human neurotropic viruses and cause several peripheral nervous system disorders, so theoretically it could possible be your underlying cause....
"Fact: Herpes is very common and may be caused by both herpes simplex type 1 and herpes simplex type 2 (HSV-1 or HSV-2). HSV-1 causes "cold sores" on the mouth, and up to 80% of the population has this virus.
However, HSV-1 may also be transmitted to the genitals through oral/genital sex and about 40% of genital herpes is caused by HSV-1. Up to 22% of sexually active adults have genital herpes caused by HSV-2. Most people with herpes will not have symptoms and therefore will not be aware they have it. 50% of people getting herpes get it from partners who are unaware they have it.
Myth: Herpes "cold sores" on the mouth are not the same as genital herpes.
Fact: Cold sores on the mouth or face are caused by HSV-1 and are commonly transmitted to the genitals (causing genital herpes) through oral to genital sex. Up to 40% of genital herpes is caused by HSV-1.
Myth: Herpes can only affect the genital area.
Fact: HSV-1 typically affects the mouth area. HSV-2 and HSV-1 affect the genitals, pubic area, buttocks, back of thigh or inner thigh. Herpes can also occur on other parts of the body, although this is less common. On the fingers it is known as herpes whitlow.
Myth: People always know if they have genital herpes.
Fact: No, 80% of those with genital herpes do not know they have it, as they may have no or very mild herpes symptoms."
In regards to your depression, i would highly recommend you don't ignore the impact this will be having on how you respond to your diagnosis, symptoms and your potential recovery....if you've had 8 people recommending counselling to you already, your mental health situation may be more of a compounding problem than you are aware of and in serious need of targeted support, so please make a point of doing something about your mental health before it gets any worse!
Hope that helps.......JJ
Once again I appreciate your wealth of information. You stated that subcortical lesions are more consistent with small vessel disease. I have also read on this board that subcortical lesions can play a part in MS. There are several posts by "Quix" where she has stated this. Maybe she was not talking about small lesions, which mine are very small. Can you comment on this?
You also stated that Herpes type 1 and type 2 can cause lesions on the brain. I have searched high and low on the internet and I have never been able to find a reference to that. I do know that HSV1 can cause what's called Herpes Encephalitis which is very rare. May I ask where you found the reference to HSV1 and / or HSV2 causing lesions on the brain?
I have read in numerous herpes forums where people suffer from all types of nerve issues. Some even stating they have been diagnosed with Small Fiber Neuropathy. Everytime I bring this up to a provider they almost always have no comment.
Subcortical lesions can be caused by ms, certainly. However they can also be caused by many other conditions, so they are not DIAGNOSTIC for ms. It's just as possible they are there for another reason.
If you read the McDonald Criteria (2010) for multiple sclerosis, among other requirements is lesions in 2 or more/4 areas that are MORE SPECIFIC for ms.
The four areas that tend to be more specific for ms are:
periventricular, juxtacortical, infratentorial and spinal cord
Even if someone has an initial mri showing periventricular and subcortical lesions, that is only one "diagnostic" area -- periventricular.
And of course it's more complicated than that - I had juxtacortical and periventricular lesions in 2013, but they also have to look a certain way to be diagnostic for ms. Mine did not. And you are right, small lesions do tend to be discounted, especially if punctate (round).
I have had an increase in subcortical lesions since 2013. All the other things have been ruled out, so they "might" be from ms.
I have not been on this forum in many moons, but for some reason popped in tonight. Anyway, I was told for many years that I had idiopathic peripheral neuropathy. When I finally went to see a PN specialist to try to get a more useful explanation than idiopathic, he ran more tests and determined I had MS (albeit an atypical presentation). So it may be worthwhile to follow up on the PN angle to determine for sure what's going on or rule it out. That said, it is also my understanding that it is less common to start out with bilateral symptoms in MS.
No one should ever say that MS would never ever cause subcortcal lesions because MS isn't predictably a black and white condition.......the thing you need to keep in mind is that MS is not the 'most likely' causation if the 'only' lesions you have are lots of very tiny (1-3mm) bilaterally scattered subcortical lesions. 'Subcortical' basically means below the cerebral cortex (there are four main parts of the cerebral cortex: the frontal lobe, the parietal lobe, the occipital lobe, and the temporal lobe)....
In regards to MS MRI diagnostic evidence, subcortical is not related to the MRI evidence you minimally need to meet the MS Mcdonald diagnostic criteria, you need lesions in at least 2 out of the 4 specific locations and if you have no lesions in any other location and not one specifically identified to MS, MS understandably becomes a less likely explanation for those lesions and the alternatives become more likely.
I'm honestly not up to hunting down specific Herpes MRI research for you whilst my head is mushie peas, it is out there, though not necessarily as easy for me to locate for you as MS research is cause i save a lot of MS related stuff for future reference....This http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2811971/table/T0001/ is a general list of white matter lesion causes that i have, but there are a heck of a lot of medical conditions associated with white matter changes not mentioned on that list and it's not specifically about subcortical lesions either. It might be more helpful contacting the reputable Herpes organisations or online support chat sites for help locating specific Herpes MRI information and guidance.
I've actually got a flu bug at the moment and hadn't noticed i'd deleted 'I think' from the beginning of that paragraph, i was trying to make more logical sentences whilst my head is space a thumping waste of space......the main reason i wrote "theoretically it could possible be your underlying cause" is because Herpes is a neurotropic virus and known to affect the central and peripheral nervous system, i'm pretty sure herpes simplex is part of the white matter MRI findings too but Herpes was only a theoretical idea .......
Hope that helps.....JJ
Your link takes me to the main page of photobucket, not to images. Just a heads up :).
That linked worked.
Please remember that my radiology training comes from discussions with neurologists and my own findings, plus a bit of online research. I am not a doctor or a radiologist.
You have a fair number of lesions in the subcortical regions, as your radiologist suggested. The cortex is the outer "envelope" of the brain; subcortical means laying just below that. Juxtacortical lesions actually are right at the edge of the cortex and span the join of the two layers; they have a very specific shape because of this.
I have two juxtacortical lesions so I know what they look like; I see none on your scan. Your lesions are far flung to the outer brain rather than in the deep white matter (around the ventricles, for instance).
An uninformed Doctor might see the lesions and assume "Lesions=ms", however, those scans show no lesions that would suggest ms as a cause. They are punctate (round), small (my neurologist ignored everything under 5 mm although over 3mm "may" be considered ms plaque).
It is very disturbing to get an MRI back and see lesions. I'm hoping you get some answers from your next neurologist; at this point, it seems more likely a mimic, given your symptoms, lack of issues with neuro exam (is that correct? I may be mistaken) and lesion size/ location.
In my non-expert opinion :).
You should push for answers, or a referral to the right doctor. If you haven't had a vascular work up, it is likely time for that, as well as the SFN work up. OH yes, and the counsellor ... Someone to vent to about how ridiculously long neurology diagnoses take :).
Best of luck as you continue to pursue answers ... It can be a long road.
I am asking the MS Specialist to give me a referral to a neuromuscular specialist to hopefully figure this SFN out. My biggest problem now is I wake up most mornings around 5 am and I have to move my legs. It seems I am developing some sort of restless leg syndrome. I think it is just when the neurontin is wearing off. I will probably have to up my dosage.
I'm very glad you are getting help with your symptoms as you wait. Keep us posted, I.