A friend who has just been diagnosed with neuropathy
 

Hi all: Alan and I have this friend who is 49 (no family history of neuropathy by the way and is not a diabetic) He has just been diagnosed with Idiopathic Neuropathy. I asked him what his symtoms were and here is what he said.

1. Burning at times
2. Weak ankles
3. Pain when he stands (better if he doesn't stand)
4. No problem with his gait
5. his feet feel cold sometimes

His doctor thinks it might be bi-lateral tarsal tunnel but is not sure. He has had extensive tests (which I am putting the results into this post). He has been to many doctors and will see another neurologist yet again. He lives in Nevada

I wish I could put his whole nerve conduction test in this post but it came as a jpeg file and I can't do it.

But I will give you the impressions.
1. Right median and lateral plantar nerves neuropathy
2. All other remaining nerves as indicated above were within normal limits.

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And here is a report he received from a MRI he took.


1-TINEL sign- on worse right ankle Do NOT have the classic Tinel's sign but they say you can have tarsel tunnel without it. Usually their standard light tap elicits nothing but when they tap HARDER I get a very slight tingle into the big toe only and they are calling the response non dispositive since even normal people can get that especially when they tap harder than normal. On Left ankle side tapping even hard does nothing.
2- DECREASED ankle and knee tap reflexes on right side only. Dr. thought maybe coming from back but MRI and EMG did not show this and he said not overly concerned about it.
3- ATTACHED ARE THE NCV test results and ankle MRI. Doctors said NCV not totally dispositive but consistent with Tarsal tunnel only on right side. Doctors insist swelling/fluid in ankle on MRI not significant than many pain free people have it. they say MRI will not show Tarsel Tunnel Syndrome on MRI unless caused by a space occupying mass.

Here is the MRI report on the right ankle!!

MRI RIGHT ANKLE
CLINICAL HISTORY:
Anlde pain. No associated surgery.
TECHNIQUE:
Axial, coronal, and sagittal sequences perfomed without lV contast. No comparisons.
FINDINCS:
Nonnal bony aiignment without acute fractue or focal bone contusion. No significant tibiotald.ioint
fluid. No tarsal coalition or {alar dome OCD. Intact tarsal lunnel.
TENDONS: Mild posterior tibialis tenosynovitis at the rehomalleolar level to the subtalar middle facet joint level (a{ial fat-sat image 15). Mild peroneus brevis tendinosis at the submalleolar level (axial fat-sat image 23). Antedor ankle tendons are intact. lntact Achilles tendon. No Kager's fat pad edema.
LIGAMEN fS: Mild chronic deltoid ligament sprain (coronal fal-sat image 17). Tibiofibular, talohbular,
calcaneofibular, and spring ligaments are intact. Intact sious tarsi and plantar aponeuosis at d1e calcaneal attachment.
IMPRESSION:
I - Mild posterio r tibiali s tenosynovitis.
2. Mild peroneus brevis tendinosis.
3. Mild ohronic deltoid ligament sprain.

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He knows that Alan has had neuropathy for over 20 years and that I belong to the Neuropathy Support group. So he phoned me and asked if anyone can read these reports and give an opinion as to what they think is the reason for his neuropathy.

Any help is much appreciated. Oh, on all the tests he took, his back was ruled out as the cause and he is not diabetic. He did have low Vitamin D levels and his B-12 was in the 800. That's about all I know.

Thank to anyone who has clue.

Melody

It's certainly possible--
 

--that was is going on there is compressive; tarsal tunnel is hard to see on imaging (as is carpal tunnel), unless, as you noted, there is an obvious space occupying mass. And, there are certainly people who experience swelling in that area, especially if they have some circulatory compromise--e.g., they get edema from time to time--which might result in neurologic symptoms.

On the other hand, it's interesting that he's having some reduced response with the knee reflex, as this implies something going on above the foot level. Decreased reflex response at the knee, ankle and elbow does frequently occur with age, though he seems a bit young for that (how MUCH was the response decreased by?)

I'd be curious about the specifics of the nerve conduction/EMG, as well as the MRI of his back (I assume that was lumbar?).

And, of course, it's possible he has the beginnings of something more systemic that is resulting in a "double crush" phenomenon that he is noticing first in the foot/ankle area, which is, of course, one place in the body that is quite prone to compressive effects.

Really not a lot to go on here as to cause, yet--more extensive testing may be needed if symptoms get worse. I assume right now treatment is primarily focused on symptom reduction?

You need some more history, Melody...

What drugs he uses, or used in the recent past.
Cipro, Flagyl, Levaquin, Avelox, statins, etc.

What he is exposed to... golf courses? With all the chemicals they put on their grass? Hobbies, solvents, heavy metals, etc.

What is his uric acid level? (gout). Any vaccines lately?

Does he smoke?

Things like that.

Dietary issues, and going gluten free may help. Or he could get the gluten blood work done.

Glenn:

Thanks for replying. He has not had an EMG as of yet. That's probably next. And he is presently not taking any medication.

I am going to copy and paste what you wrote and send it to him. And I do thank you so much

Take care, Much appreciated, Melody
P.S. If anyone else cares to chime in, please do so. Much appreciated.

Thanks Mrs. D. I shall forward onto him what you wrote.

Again, thanks so much

Melody

Mrs. D. In response to your query this is what David just emailed me:

Decreased reflexes on right compared to left. left side normal. at times no reflex on right but then Dr. will try again and get a decreased reflex. if the doctor tries the reflex test 10 times will even get a normal response once whereas other side normal on every tap. one Doctor conclusion is its decreased on one side and means systemic issue. another doctor thought the same but changed mind based on EMG and says sometimes age or just unknown reasons decrease the reflex.

Never smoked. moderate drinker. have not taken drugs below. need more blood work but Drs. do not think this is caused by toxins.


Thanks Mrs. D

Melody

Hi all.

Just got more info from the person in question. I got his blood test results. Absolutely everything was in the normal range except for his Vitamin D levels. They were 8. That is VERY low right? Could that be a reason for his achy feet and the fact that even if he stands up, his feet hurt so much. And when he walks. Not when he drives or when he sleeps. Just when he stands or walks. I asked him about his toes and he said "Honestly, it's just my feet. They ache all the time. This has severely changed my life.

And he has not taken an emg because he's afraid of needles. I explained how important it is to have an emg in addition to a nerve conduction test. He says he is going to yet another doctor and will probably have to take an emg and yet another nerve conduction test

He also said that because of his low levels of Vitamin D, he was prescribed 50,000 a week but when he took it it made his ears ring. I don't think he took it ever again.

He asked his doctor about the low levels of D but the doctor poo pooed him and said. This Vitamin thing is all blown up, every body who comes in has low levels.

???????????????????????????


Melody

That's a pretty low Vitamin D level.
 

The vitamin deficiency certainly could be contributing to his situation, though low Vitamin D is not generally thought of as causing neuropathy by itself, as low levels of B12, B5, B1 and E can.

However, one does wonder WHY his level is so low. Assuming he does not live indoors 24/7--and maybe even if he does--the immediate thought is malabsorption or some imbalance with calcium, which also brings thoughts of gastrointestinal problems . . .and celiac/gluten sensitivity (I don't suppose he's had a celiac panel or mentioned any other non-neuropathy symptoms?).

Of course, celiac/gluten problems have been documented to cause neuropathy through autoimmune cross-reactivity with nerve epitopes independently of nutrient malabsorption effects. (It's certainly possible there are multiple contributory factors. But he really needs to get some more Vitamin D3 in his system.)

I got my D3 levels up by taking 5,000ui D3 a day, it takes a couple of months but might be a better choice, if he was having a reation by the mega dose. They sell it at Costco, 3 moth supply for around $10.00. He would deffently benifit by having his B vitamins tested...

The RX version of D, given by doctors doesn't work well or much at all. (50,000IU D2 ergocalciferol)

Your friend needs to read our D3 thread:
http://neurotalk.psychcentral.com/thread92116.html

It might help to stop drinking alcohol for a while. People vary in how much drinking damages nerves.
Also going gluten free is an option.

Investing 100% in our medical interventions today, does not work 100% for PNers. PN is often an acquired environmental problem, besides the metabolic and compressive mechanical causes. And the hereditary forms are still not treatable at this time aside from symptom control.

Hi Glenn:

I just emailed you with the complete blood work. What I am going to post on this thread are the results that kicked out in the abnormal range.

So if anyone has a clue what is going on in this guy's body, I'd welcome any comments. His feet are killing him. He didn't have an emg test yet. But he just got some new blood work done. Here are the ones that kicked in the abnormal range.

Oh, my friend wrote me the following about his blood tests:

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A-- looks like this is NOT in any way related to rheumatologic condition. I had specialist run tests especially for lupus and sjogren's syndrome - previously very specific test was negative for straight rheumatoid arthritis.
B-- testing out of range in many other categories related to general complete blood count and urine test. you can see the asterisk and comments in bold print. do not want to worry too much. MAIN CONCERNS are the way out of line 1-WBC and 2-RBC in urine. in blood the results not that out of line.
C-- Also- 3- calcium level concerns me as out of range and it can explain bone pain in the feet. my research shows high calcium is a parathyroid problem. one of your friends commented on getting my calcium re checked.


Doctors assistant called and just said to take Vitamin D and come back in 2 weeks for new urine test. says new blood test not needed.


Complement C4, Serum - 38 Range: 9-36 - mg/dL Adult Flag: H

**RBC - 11-30 Range: 0 - 3 - /hpf Flag: A- I THINK BIG ISSUE- WAY OFF- NO SYMPTOMS OF URINARY TRACT INFECTION FOR ME.

**WBC - >30 Range: 0 - 5 - /hpf Flag: A- I THINK BIG ISSUE AS TESTED MORE THAN 6X NORMAL BUT NO SYMPTOMS OF URINARY TRACT INFECTION-

Vitamin D, 25-Hydroxy - 17.2 Range: 30.0-100.0 - ng/mL Flag: L- 6 MONTHS AGO WAS ONLY 8.5 SO NOT WORRIED ABOUT THIS.

WBC - 10.0 Range: 3.4-10.8 - x10E3/uL- NORMAL BUT GETTING HIGHER. 6 MONTHS AGO ONLY 8.8

RBC - 5.87 Range: 4.14-5.80 - x10E6/uL Flag: H- 6 MONTHS AGO WAS 5.7 SO WENT UP

Neutrophils - 76 Range: 40-74 - % Flag: H- SLIGHTLY HIGH BUT ONLY 68 JUST SIX MONTHS AGO

Neutrophils (Absolute) - 7.7 Range: 1.4-7.0 - x10E3/uL Flag: H- slightly high BUT ONLY 5.8 SIX MONTHS AGO

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Thanks to anyone who has any idea.

Melody

As I wrote privately--
 

--there are a lot of things which could be causing these abnormalities--autoimmune inflammation or an infection among them--but it would also be prudent for further blood testing to be done along the lines of a peripheral blood smear to examine and type the neutrophils, in particular, because, unfortunately, these type of abnormalities can also be seen in certain types of malignancies. It would be good for these to be ruled out, if they can be (especially as neuropathy is a known accompaniment to several types of blood cancers).

(Anyone else who wants to chime in, feel free. I admit to being somewhat uncomfortable bringing this up, as I do not know the person who Melody is communicating with; it's not someone we're familiar with on the boards her that we could private message. But I do feel it would be irresponsible of me not to bring this possibility up for him to get checked out--I had personal experience, years ago, with a tutoring student who had bruises on her legs that she claimed to be just due to hard soccer games but which I suspected might warrant further investigation, but I did not say anything at the time--turned out she was diagnosed with leukemia down the road, and I'll live with that for the rest of my life. It has made me a lot more paranoid, and maybe I jump the gun too much with suggesting further testing, but I feel better safe than sorry.)

I agree with Glenn....

Elevated complement C4 is associated with cancers, and colitis.

Could be anything causing the other elevations from infections to kidney disease.

In the meantime, stopping drinking would be a good idea too.

This fellow will need more doctoring IMO.

edit to add -- the RA test is not very accurate. And neither is the ANA for lupus. ANA will not change for most people with a drug induced lupus either. Many people with lupus test at times with normal ANA's. And I know some who had positive ANAs after a pregnancy which normalized in a few months. So one cannot rely 100% on either test, when only done one time.

To Glenn and Mrs. D

Your information is invaluable. However, these things I CANNOT WRITE because this is a family member (through marriage) who suffers from extremem anxiety right now. And I mean Extreme. His feet hurt. That's all he cares about. He looked up all things neuropathy (never dreaming it might actually be caused by a cancerous tumor somewhere in his body or possibly something else) and we don't know this for sure right? But SOMETHING is going on.

As his doctor told him to come back in two weeks for more urine tests and told him he doesn't need more blood work, how the heck do I over ride that.

He did come to me for info because he knows I know people who are very well versed in medical terms and neuropathy etc. I know for a fact, he is NOT prepared to hear this.

So how do I write to him and prepare him to ask his doctors to go for the tests that were specified in Glenn's posting.

I need to word it so that it doesn't make his blood pressure go sky high, he doesn't have a panic attack, etc.

I'm thinking I can write.

David: Some of your readings are rather high and that gives them cause for concern. They indicate that you might want to get the following tests done.
(then I can mention the tests that Glenn indicated in his post) to rule out autoimmune inflammation or infection, etc. . I can do this without mentioning cancer, etc. Just that further testing in these areas would be prudent.

Then I can write what Mrs. D wrote about her RA tests.

I just want to word this so he doesn't drop on the floor saying 'OMG, I'm dying".

you see what I'm up against?

Thanks guys

Melody

Don't do anything Mel.... he is an adult and can look stuff up himself.

Sometimes it is best to not do anything and let the patient do
what he needs to.

The bottom line is that he needs more doctoring...and testing, etc.
Have him do that.

My sister in law just phoned me. I ran the whole thing by her. She told me to email him just saying that there were (as he knew) some test results that kicked out abnormal and that he should go for further testing. She said I should mention the tests that Glenn suggested. So I said 'no problem.

So that's what I'll do. it's up to him whether he pursues this or not.

And I thank all of you very very much

Love , Melody