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Avatar universal

Could this be correct? MS Specialist says not MS, but rather Small Fiber Neuropathy.

I recently had a followup with the MS Specialist at the Cleveland Clinic.  I went into the appointment expecting to receive a diagnosis of MS.  She brought my current MRI Images up along with my 6 month old MRI images and she said I do not have MS.  She said there was no progression with the lesions found on my MRI and that the lesions were not MS specific.  She said my lesions, which are numerous, are only in the subcortical region.  She said these are not consistent with MS.  

I said ok, well then what is causing this pain in my legs especially the weird parathesia/burning/cold sensitive feeling in the bilateral calf region.  She said very straighforward that I have small fiber neuroapathy.  I was totally shocked since I have a good idea with SFN is.  I said we need to do a biopsy to confirm this.  She said that test is unreliable and would not change her diagnosis or treatment.  Her treatment is only increasing my dosage of neurontin.

My other symptoms are a strange tightness in my upper back that comes and goes.  I also have occasional teeth chattering.  I asked the MS specialist what could be causing these symptoms and she again said it is  not MS, but rather a reaction my body is having to SFN.
15 Responses
667078 tn?1316004535
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.
Alex
2 Comments
Thank you.  I may have to eventually seek out a pain clinic.
@hvac
@supermum_ms
@aspen2

If I may ask another question. I'm confused why the MS Specialist would be so sure I do not have ms.  I'm only 46.  I have 15- 20 lesions scattered on both sides of my brain. I have a number of neurological symptoms.  I have had numerous other tests from bloodwork, emg, xrays, etc to rule out other issues.
The only mystery is I test positive for herpes hsv1. This all started 2 months after I broke up with a woman who disclosed to me she had herpes.
I have never had any type of genital symptoms, but I do have chronic red painful bug bite like bumps on my butt. These appeared around the same time of my Neuro issues. I have been to two dermatologist both think these are some type of folliculitis, but neither would do a swab. I did explain this to the MS Specialist.  I'm assuming she took this into consideration to make the SFN diagnosis?
So I guess since I can walk ok, pass the Neuro exam, I can talk ok, still do my job, etc., the MS Specialist will not diagnos ms? Is that how this works?






5265383 tn?1483811956
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.
1 Comments
When I pressed the MS specialist more about the biopsy for SFN she did finally give in and said she could refer me to a specialist in this field.  I did not take her up on it because I was so depressed by her diagnosis.  I may contact her again to get the name.  Thank you.
987762 tn?1331031553
COMMUNITY LEADER
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

1 Comments
I just feel like they are blowing me off.  They have not mentioned any other tests that I have read about such as VEP, etc to further rule out MS.  Slapping me with an SFN diagnosis and only offering to up the Neurontin just doesn't seem right.
I will probably need to go to California or an academic institution in the future.  Sad thing is, I just wrote an $800 check to the Cleveland Clinic for services I would say were less than par.
1088527 tn?1425316975
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
5265383 tn?1483811956
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.

(((Hugs)))
2 Comments
Getting treatment is the most important thing now. You might well be diagnosed with something down the road. Yes a diagnosis is important. Symptom relief is too.I had MS for over 40 years before I was diagnosed. Unfortunately I did not have my symptoms addressed until after I was diagnosed. I did not even know I had symptoms until the drugs took the symptoms away. I thought I was crazy. It was nice to know I was not.

Alex
At this point I am looking to just treat the symptoms.  Unfortunately, i am tapped out for a while.  Insurance just isn't what it used to be.
5265383 tn?1483811956
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.
2 Comments
Well, she seems to be a good doctor.   Albeit young.  Med school at USC. Residency at Stanford.  I will pursue the SFN specialist once I have the resources to try and rule in or rule that out.
I agree with counseling. You are about the 8th person whom has made that recommendation. My friends and family have seen an athletic outgoing person become a depressed broke potato couch.
I really appreciate your responses.  I think I have learned more from these forums than I have from all my doctor's appointments combined.
Thank you.
Online support is invaluable -- I would have melted down completely without it.

Keep us posted, okay?
987762 tn?1331031553
COMMUNITY LEADER
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....

Information:

"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."
http://www.herpes.org.nz/patient-info/myths-vs-facts/

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
Avatar universal
Hi Supermum_ms,

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.  
5265383 tn?1483811956
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.  
333672 tn?1273796389
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.

sho
987762 tn?1331031553
COMMUNITY LEADER
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
5 Comments
I'm sorry you aren't feeling well.  The flu can be a real bummer.  I hope you get well soon.

I have looked at my brain MRI and, yes there appear to be 15-20 1-3mm lesions scattered on both sides of my brain.

I do have a followup visit with a neurologist in CA the end of this month. She is the UCLA educated doctor that really seemed to focus on this being MS.  I'm eager to show her my new 3T MRI images from the Cleveland Clinic and get her opinion.  It will be interesting to hear her response when I tell her an MS Specialist says this isn't MS.
When you look at your MRI reports do they actually state there are 15-20 1-3mm lesions, mention their locations eg frontal lobe, cerebral hemispheres etc.....or....are you just looking at your scans and coming up with that from what you can see, cause if you DIYing your own scans, for lots of reasons your likely to be guesstimating it wrong.

It's actually more common for the non MS specialising neurologists to get MS wrong than the other way around, i'm not saying it can't happen but generally MS specialists specifically know more about MS, MS mimics and early signs to look out etc for than general or non MS specialising ones and its why we usually recommend people specifically get the opinion of an MS neuro.

Just a thought....you mention your nerve type symptoms but i don't see any mention of any clinically abnormal neurological signs or anything that would typically put neurological conditions like MS on a potential causation list. You haven't mention having a spinal MRI to rule out any common structural issues, i would of thought that shingles was a possibility too because of the coincidental Botox rash....honestly for any neuro to suspect MS, there'd need to be 'something' more than just a bilateral presentation of subcortical lesions on a brain MRI, so i think you might be missing some key information, hopefully your follow up visit with UCLA will fill in the gaps and get you a second opinion for the small fiber dx.

Hope that helps.......JJ

  
Here is a link to a few of my MRI Images:

http://s1067.photobucket.com/

Yes, It is just me coming up with 15-20 lesions.  The images seem to prove this?  Both radiologist reports stated multiple or numerous, but they never gave an exact number.  I just assumed that was because I have so many lesions the radiologist didn't feel the need to count?

I have had both a Cervical and Thoracic spine MRI and both were normal.

I have had 2 EMG's of my legs and both were normal.  My lumbar puncture was normal as well.

My bloodwork is all normal as well.
ah MRI reports typically don't state the number if there are clusters and or lots of scattered micro or tiny sized lesions, small brain lesions are more commonly vascular related when they are 1-3mm and because your reports stated "Multiple or numerous" it's not that the radiologist couldn't be bothered to count them, it's just basically normal radiologist speak when they see lots of small lesions....

It's not so simplistic for the untrained eye to look at an MRI and come up with the correct number eg generally 1.5T's show approx 25% less than a 3T, standard scans usually do 5mm slices and MS protocol 3mm, even small lesions will show up in consecutive slices etc etc....realistically an untrained visual count could be coming up with too high a number and it's even possible for the number to be less than there is too and don't forget to keep in mind that scattered microscopic or small lesions are 'usually' silent because of brain plasticity.


I think all you can say for sure at this stage, is that you don't know exactly what medical condition your dealing with.....MS understandably drops lower down on your potential causation list if you don't have the suggestive or consistent diagnostic evidence,  something is definitely going on but working it out is probably going to take more time and further testing, so hang in there!

Hope that helps......JJ
  


5265383 tn?1483811956
Your link takes me to the main page of photobucket, not to images.  Just a heads up :).  
2 Comments


Maybe this will work?
http://s1067.photobucket.com/user/oddity11/library/
5265383 tn?1483811956
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.
3 Comments
Hi Aspen2, I appreciate you taking the time to look at my images. My Neuro exam is normal.  
I will see what the regular neurologist has to say about SFN and then go from there.
Counseling and a vascular workup may be in the near future as well. Thank you

It's so confusing especially when you are videos on YouTube where someone has two small lesions yet they are diagnosed with MS.  See pfizer news video multiple sclerosis.  This young professional dancer diagnosed with ms.  My MRI seems way worse than hers.
keep in mind that the number of lesions on an MRI is not generally as important in dx MS as their location and type,  it only takes 1 demyelinating lesion in the brain stem or the spinal cord or the cerebellar or the optic nerve etc etc to do a lot of damage...  
Avatar universal
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.
5265383 tn?1483811956
I'm very glad you are getting help with your symptoms as you wait.  Keep us posted, I.
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