Various symptoms - very confused!
 

I'm new here so bear with me - not even sure where to post as I don't have diagnosis yet. I'm a veterinarian and thought I knew basic neurology fairly well - but apparently people are NOT animals! Anyway...

I'm 43, onset 5 1/2 months ago, had been "perfectly" healthy.
Everything has been symmetric/systemic.

Initially was middle toe numbness, progressed to top of feet, then patchy numbness up legs.

At same time was leg cramps and fascicularions - I do a lot of standing and they really ached if I stood still.
Also several times if I didn't move my legs "fell asleep".
Well, that numbness gradually went away back to my toes, but then developed whole body sensory loss.

First noticed scalp pain when out in hot sun, then encroaching sensory loss of head, face, then mid-body, then eventually everywhere. I can still feel most placed but not really pin-prick sensation.

Then came the lethargy - woke up one morning VERY lethargic, lasted ~2 days. I have had several more of those episodes, and more recently induced by exercise.
Along with sensory loss came ED - had weak sex for 3 nights, then next "unable to", followed by 2 days of severe lethargy.

My new symptom is muscular fatigue? example - I carried a 30# box for about 5 minutes, felt arms just trembling, then severe lethargy again for several hours. Now moderate lethargy is not going away, and legs are consistently weak.

Early on I also had more episodes of arms and legs falling asleep from seemingly benign positions. Oh, did I mention dry eyes now? (used to yawn and produce some tears - but not anymore).

ALL lab work has been normal. Ruled out diabetes, thyroid, Lymes, Myesthenia, etc... Both local and OSU Neurologists think Small Fiber but has no clue on the fatigue. EMG & NCS normal. I have some skin biopsies scheduled but doubt that will be helpful big-picture-wise. \

Never has been any real pain, but now I'm getting really scared with the weakness which does not seem to be going away.

Sigh. Anyone have any thoughts or direction for me?? THANX!!

First off.... B12. Low B12 leads to weakness etc and other neuro symptoms. Your test should be 400-500 or above to be normal.

I would also get tested for heavy metals. Arsenic, mercury, cadmium etc.

Did you have vaccines recently? Autoimmune markers?

Being a vet, could you have contracted some virus?
Have you had viral titres for Herpes family?

GBS causes numbness, and you might have a slow variant.
This can come from vaccines, or some infections. Campylobacter is a known cause (from poorly cooked chicken).
Trichinosis?

I have to say, my cat sneezed on me last year at this time, and I got a nasty virus from HER! Never mind the human viruses! :rolleyes:

I'd sure go thru all the diseases of animals you are exposed to, first.

I would also get better Lyme testing. Go to the top! Western blot has false negatives.

Do you use statins? Have you had fluroquinolone antibiotics recently?
Both of these damage nerves.

Thanks for the quick reply!
Unfortunately B12 OK, no vaccines, no immune abnormalities (don't have lab work here but ANA OK, etc.). Never any fevers. Not on any medications.

Just strange about the episodes of severe fatigue - I could predict them, hard work then down for about 2 days. But now persistent...

Doses of Methyl-cobalamin (not cyano-cobalamin) in the range of 2000mcg-5000mcg per day will help with the lethargy/weakness - no matter what your test scores are
(I would be conservative and say below 600 is sub-normal and needs bolstering)

If it is PN (the skin biopsies will confirm small fiber, that the EMG won't catch) weakness and inability to get motivated can be s/e.

Your age is on the young side for most PN onset- but inherited,
or autonomic causes should be ruled out first.

The dry eyes could be a sx of Sirojens (sp?) syndrome,
& you might want to look in that direction.

As far as the ED, you might want to peek in on the Sexual Dysfunctions forum, here - and see what they have to say.
Usually, with PN, ED is a s/e of meds such as Neurontin/Gabapentin & that genre of medication- rather than the PN itself, but there are such varied sx with this condition that its difficult to rule anything out.

ED is not very common without a medication being in the way, but stress is a huge factor in PN flares-and stress can be the underlying cause for the ED episodes..

I would go visit our MG forum anyway. There are variants to MG that are seronegative, that some of them have and describe.
It wouldn't hurt to read them a bit there. The characteristic weakness which resolves when rested, is typical of them.

http://neurotalk.psychcentral.com/fo...aysprune=&f=77

Some of them have swallowing and breathing difficulties too.

Things that will help muscle weakness are:
B6 (pyridoxal)
acetyl carnitine
CoQ-10
r-lipoic acid

These help with mitochondrial issues. It is possible you have a mito disorder that just appeared. It can happen that way.
Research on mito disorders is ramping up now. There is alot on the net about it.

Severe allergies can also cause a weak feeling. But not that numbness.

They should do a Lyme test on your CSF. Also if you were treated with antibiotics, your titer is basically frozen where you took the abx. I had Lyme 15 years ago and now have autoimmune issues. I had the EM rash. I believe my dog brought the tick in my house, and I sat on it. Was bitten in the thigh. I did not know it for days until I scratched off what I thought was a small scab. I live in an endemic area tho, so it could have come from anywhere. Those Lyme tests are very inaccurate.

My titer started to climb and then stopped under the cut off for +. So I test negative, except when they do bands. And I was diagnosed and treated within 2 weeks of the bite...and had a classic EM rash, that was quite big.

I would seriously consider some transmissible disease, due to the acute onset.

Have they done a brain MRI?

Short of it being Lyme, have the ANA repeated....an FANA, the expensive kind. Your post implied you are a male, and the chances of autoimmune disease are less than in females, but not impossible. Dry eyes can be neurological or inflammatory. Other tests that pick up inflammation, sed rate, C-reactive protein, platelet count (high) CD4/CD8 ratio....eh, but you knew that already. Don't think you don't have a substantial knowledge base....a lot of research applied to people is done on animals....we share a lot.

Your presentation seems very acute.

Mine evolved over decades.

Good luck to you and I hope you find an answer.

Thanks everyone...

For completeness, my blood work thus far (all "normal"):

CBC/Chem, ANA direct, sed rate, B12 795 pg/ml, CK 127, free T4 1.2, TSH 1.27, Acetylcholine receptor Ab (all), Lyme IgG/IgM, IgM quant, CK again 151, Aldolase, Phos & Mg again, CK again, Proteins incl. electrophoresis, T4 and TSH again, intact PTH, Autoimmune serology (RF, Smith, RNP, SS-A, SS-B), and more proteins/immunofixation (IgG, IgA, IgM, monoclonals).

I don't believe in the word "Idiopathic", although as a veterinarian I know that that is where a diagnosis sometimes ends, but there must be a cause somewhere. I'm still stumped by the muscular fatigue that I know I can induce with overexertion, predictably followed by several days of fatigue. Cortisol? A (micro)vascular problem? I've also checked my glucose during those episodes looking for The Simple Answer.

:frown:

Given that you are a veternarian--
 

--have they done any PCR's to test if you've got any viral titres?

One of the things that came to mind with your symptoms was cytomegalovirus, which is certainly present in domestic pets, can infect humans, and can have neurological sequelae. (Parvovirus came to mind, too.)

Yes, I am thinking this is infectious. Perhaps going to an infectious disease specialist may help.

The only other thing that causes numbness and weakness besides some infectious agent would be organophosphate poisoning.

This list of symptoms of chronic exposure, seems to fit your
descriptions:

http://www.drmyhill.co.uk/article.cfm?id=291

No viral PCRs, yet.

And while I am very familiar with organophosphates, luckily I have not handled any directly for probably 10 years. I have seen several pets, usually cats, last was maybe 4 years ago, owner applied to pet (and often wrong dose or already debilitated pet) and ... oops. No, luckily that's not me.

Contact with farm animals? Could you have gotten contaminated by chemicals in a barn?

A lot of docs blow off Igenex Labs, but they are CLIA certified, and they do the bands for Lyme and Erlichosis. You could try that. My IgM response to Lyme was high and they only do the IgG on standard tests. I had PCR of my CSF and it was negative, so I am reasonably sure my Lyme was killed...but it may have induced the autoimmune stuff, I don't know.

Also, they can do a biopsy of muscle to see if anything shows there....I surprisingly showed a neurogenic myopathy.

I imagine they will do a skin biopsy and also stain it with the Congo Red for amyloidosis.

What is odd is your issues proceeded in a cephalic to caudal manner. Really odd. Guillain Bare goes from lower to upper. Most PN is distal to proximal. You are a mystery!!

I just think it is likely some organism, just as the others do. I would exhaust that first, the other things will eventually become clinically evident.

are you a small animal/office kind of vet only? or visit the farm? were your could have been exposed thru the air?
any exposure to xray?

Hey. Welcome and I am sorry you are facing this. Have you been tested for lupus,sjogrens,fibromyalgia? Just throwing some other conditions out because of the tired muscles,fatigue and dry eyes. I also have dry eyes but it is seperate I guess from the PN and RSD. I had skin issues too where my skin was like shedding off but that was seperate too. My point is some things can be connected of course and signs of a condition but some are seperate. It is hard to know. What medical docs have you been to? Hang in there

...Continuing saga...
 

Quick update - In January had EMG & NCS ("mild bilateral S1 radiculopathies are present" and "no electrodiagnostic evidence for PN"), I was quickly scheduled for lumbar MRI which I canceled due to travel, cost, and I guess wanting to take things 1 step... Had skin biopsies after I got back which just came back last week confirming Small Fiber.
Note: I have never had ANY pain - just skin numbness and muscle weakness. And eye dryness, and "heavy" or tightness around eyes/eyelids.

Whole body partial numbness has persisted.

I've had some additional fatigue episodes - when they hit I'm weak for at least a day. Head/face, hands more recently have a "callous-type feeling" of dull, tightness - that is, face feels tight but no outward change or redness. And have had continuing leg weakness but that also waxes and wanes. A few days ago legs were weaker and I feared leg collapse if I did much more - but now back to mild weakness.

Also had incident in January of a big travel day and tried to keep it light, but did carry a 35# box about 10 minutes (a simple task by past standards), half way through I paused, and arm was trembling, then after wards I was quite fatigued for about 18 hours.

And a month ago noticed my heart beating stronger when at rest, that I could even "feel" the beat in my neck & head where only that would happen after exercise.

I have appointment tomorrow with Neuro. Any additional questions I should ask them??

Well it is quite a puzzle.

I don't see in your past post that you had a Vit D level run?

I'd get that.

And perhaps investigate the other labs(Igenex) who do Lyme testing.

I hope you find your answer.

I agree with MRSD on the Igenex thing. I had a well documented case of Lyme, and rising titer from the state lab, and now nothing...except on Igenex.

The other thing I see, is tight face. Is your skin actually tightening? Any telangiectasis? Did they do an ANA and ENA? I have that face sensation too. My ANA is very high....but, I had the PN for 2 years prior to my ANA going ballistic. Get tested for all the autoimmune things, and given the eyelid thing, myasthenia gravis. I know it is a long shot, you being male (?), but, stranger things have happened. Many men get autoimmune disease.

Old barns are hideous for chemical residue. I wonder if you could have gotten near any bad chemicals? Eye dryness can be more than inflammation, it can result from neurotoxicity. Sjogren's occurs less often in men, but still does. I think more likely, it is neurologically caused. Could you get an autonomic battery done somewhere?

I am soooo glad you had the skin biopsy. I felt a lot like you. I was shocked when they told me I had PN....utterly shocked. I never had any wierd stuff....just dead feeling, and limbs falling asleep.

Another option if they don't find the cause is the hereditary neuropathy testing by Athena...(careful, check with insurance).

This is the beginning of a long journey, but start with the Igenex lab. You may be surprised at what you find. I am + for Borrelia and also Erlichosis. I had it 16 years ago. I also have that 'weakness' you speak of. I have to be sure of every foot plant on my right side....I never trust that leg. And to think I used to be a runner! (This sux).

Good luck to you, let us know what happens.

Thanks for the replies!

No Vit D testing yet. ANA was neg. B12 was 795 but I'm still taking 1000mcg daily.

My Neuro's message about tomorrow's appointment wrt Small Fiber Dx was "we can talk about treatment options". But wait - I didn't think SF was an end diagnosis! Just a condition of some undertermined process... I don't believe in "idiopathic", just that the connection hasn't been made yet.

Was reading about IgeneX - interesting. Costs?

Today was a good day - still leg weakness, but general energy and drive to get a lot done was intact. I'm wiped out now, but rest usually is beneficial.

I'll recap after tomorrow's appointment...

Sorry to rain on your parade, but neuropathy (PN, SF, etc) is a chronic illness with no known cure.....yet.
Sometimes the progression can be halted, sometimes even reversed a bit.
But probability is that you will have it, until a cure is found..... or your diagnoses determines a cause that can be corrected (usually decompression of nerves, by surgery - ''Dellon'' treatment).

Craig,
Over the past 5 years this crap has presented itself in many different ways, it started in the left foot and then into the right foot after 6 months, the left foot is now very mild really doesn't bother me all that much, but I now have a neuroma in my right foot and right leg has become very weak. I have quit all meds except for methadone 10 mg two times a day, over Xmas developed Prostatitis (its worse than PN) Good Luck and enjoy the good days cause your gonna experience a lot of bad ones, be strong. There are a lot of great people here who give good advice, I can't say much for the medical profession.

One more thing on eyelid tightness....thyroid normal? Exophthalmos? I assume they did thyroid?

If all looks normal, any chance of IVIG?

Interstingly, my PN came on after herniated disc diagnosis, and spinal nerve root blocks. Complicate that with a sky high ANA....who knows? It is really hard to pinpoint etiology. The more one learns, the more one knows there are really few answers. Nerves outsmart us all. I have also surmised that autoimmune conditions hit people who have had major physical or emotional trauma within a few years of diagnosis. Hmmm. Gives credence to psychoneuroimmunology.

All I know is I am losing my mind over it,, I cant enjoy the sun today,, it feelsl like Ip;m burning, I dont kjnow how you people deal withit,, my armshurt and burn,, my finger tips are numb and burn,, and my neuro said today,, there is nothing more we can do,, so thats it,, leave me to writher inpain for the rest of my shortened life,,screw this

FTB: Reading the agony and resignation in your post is all too familiar. I have not been through the difficulties you have endured, but do know the pain of PN. It is not easy for most to understand how truly overwhelming the pain can be, so I’m sure you feel quite alone. You are not. We all understand, as only someone who has lived with that pain can.

There may be nothing more your neuro can do, but there is something you can do. Find another neuro. I think there are too many neuros that simply don’t want to understand the severity of PN pain, and others that actually feel treating PN is beneath them. But, there are many neuros who go out of their way to understand how debilitating PN is.

Don’t give up. There are people here who care and support you. I’m one of them. May I suggest you try checking out neuros who are members of the Neuropathy Association? I checked their website, and there appears to be a good selection of neuros in both Pittsburg and Philly that are members – meaning neuropathy is their area of interest.

http://www.neuropathy.org/site/PageS...utpo06a3.app5a

My neuro is a member, and it has made a big difference for me.

You wont believe this, but I have seen 3 of the neuros out of teh 5 listed in Pittsburgh ,, In one practice that one of the doctors practices out of,, I saw 2 neuros there,, and the very first one listed is the one that said he has no clue what is going ona nd made the recommendation for me to go to Mayo, and pushed for me to go there and got me approved by insurance,,

Craig:

May I suggest that you talk with your physician about trying "Cymbalta" for your neuropathic pain. I have had great success over the years with it for both small-fiber "burning" and other neuropathic-type pain.

One typically tapers-up with 30-mg once daily for the first week, and then goes to 60 mg once daily. However, you should wait three-full weeks after arriving at 60mg/day before judging success or failure.

If Cymbalta does not help (which it may well), then you could consider trying "Lyrica", which operates by a different mode of action.

However, whether you are on Cymbalta full strength for three weeks or a year, you must remember that when you finally decide to discontinue it you must taper off very slowly.

Best of luck ... you will get through this!

David

Small fiber definitely is a real diagnosis. My neuropathy is very real, small fiber sensory neuropathy. I do not take any meds for it as of yet, I do however use 5000mcg daily of B12, my level now is 1704, and my neuro told me to continue with this dose. I am not sure that healing is happening, but stopping the progression is very important too.

Has anyone in this thread mentioned gluten? I read many, but not all posts. Gluten intolerance does cause neuropathy too. My neuropathy was caused by years and years of misdiagnosis of gluten sensitivity. Now I'm stuck with it.

I don't think any one is disputing that small fiber neuropathy is real.

Deb, as you said, you were misdiagnosed and your Celiac disease was not found. Your neuropathy is due to Celiac Disease. I think Craig is wanting to explore what may be causing his neuropathy, and that is a good idea. I think it is wise for every one with SNF to have some tests done, even years after being told it is idiopathic. My ANA didn't convert for several years. Had I not pushed having tests done, I would not know. I think docs are very quick to proclaim it idiopathic, resulting in the etiology not being found. If there is some pathology that can be managed, it could cause the neuropathy to be controlled and not progress. I say could, because, I think that is debatable in some cases.

I do think that SNF can in and of itself be a 'disease' so to speak. It can be a stand alone condition, but, I think it is worth exploring all possibilities, especially in a very healthy person. Still even with this, 25% of all cases are idiopathic, or no reason found.

Cymbalta and Lyrica simply tune down the nervous system so it doesn't feel the pain of the condition. They are not a 'treatment'....but, thank goodness they work for some.

IVIG or in some case steroids can be used to try to treat it. The jury is kind of out on it. Some insurance won't pay for it, yet.

Oh, I have to give Glenn credit on my case......HE told me he thought it was possible molecular mimcry....I totally agree. He told me this, when I was first searching for answers.....

FTB, I am so sorry that you are going through such a tough ordeal.:hug: I understand what you said about the sun--my feet react that way, and if it's hot out I can't cover them with shoes either, so I just have to stay out of the sun completely.

Please don't give up. It's OK to say you feel that way (most of us have at some time or other), swear, cry, and whaterver else helps you vent, then keep trying. And remember that we're all here to support you in your fight.

As for that list of docs, I am scheduled to see one of them in a few months. I hope it's not one of the ones you found unhelpful.

I have my burka for the sun...at least in early summer. After that I toughen up some. Eh, after a beautiful week and plants coming up...now they tell us 7" of snow....hello???? What is wrong with this picture?

Meds can cause sun issues for some people. One has to cover up big time and be mindful of the sun. Some folks can not take sun at all.....such as in some porphyria.

It's the heat on my skin more than the UV, although being blue-eyed and fair-skinned, I can burn, too.

I found a fabulous little "personal tent" at Costco, but I can't really remember what it's really called. It was about $40 and folds up into a bag like a nylon camp chair. I can't wait to be able to hang out "in the sun" this summer with friends and family now that I have some portable shade!

After withering all winter in this dark, cold cave of mine, I can not wait to bake in the sun.....blue eyes, fair skin and all....don't care!! I want sun and warmth...no matter what the consequences. Give me my garden or give me death! Well, ok, maybe not death....:o

Warm weather gives me the burn too, I have ordered slippers from footsmart with freezable gel backs that have slits over top and bottom of foot, not here yet. So, in the last two days I have kept my foot tub full of cold water and epsom salts, kills the burn for awhile. Digging out my sandals and flip-flops, my feet can't see the sun anymore, sheer agony. My foot tub and I are close friends in the coming months, and when my mouth starts to burn I swish with cold salt water, all short fixes but I'm up for anything. None of this is fun but you can do things that get you through the day and even sometimes forget you have PN.......

Have you tried 'Biotene' mouthwash (for dry mouth) ?
It might help the burn.

That sounds fantastic, jannaw! Just looked on the FootSmart site, but can't find them. Could you possibly post a link to these?