Cause of PN? Why does it matter?
 

Dear NeuroTalk friends,

I had another EMG on Wednesday afternoon. The results were the same as they were 3.5 years ago. Some numbers were a tiny bit worse, but generally things were the same.

I've posted the results from 3.5 years ago at the bottom.

The problem for my neurologist is that he cannot identify the cause of my neuropathy. Almost everything has been ruled out. Since the neuropathy is only in my feet and legs, some possible causes are also ruled out, like toxic exposures.

The other interesting thing is that the neuropathy is obviously NOT progressing at all, which also eliminates some conditions that would include progression.

1. Does it matter if we find the cause?
2. It seems unlikely that even with a cause identified, there will be any treatment.
3. How can I assess how disabling this neuropathy is? I mean, I know what I can't do, and how it affects me. But is there any scale for assessment. My family just doesn't understand how it affects me. I would like to have something to show them that explains why all the exercise in the world won't make me better.

I also don't understand if this is a sensory neuropathy only, or also motor? I assume it is a poly neuropathy.

I also have some indications of autonomic neuropathy.

I have Sjogren's Syndrome, tho' always test negative on the blood tests. Since I am also immune deficient, I imagine that somehow contributes to the failure to test positive. That, and I know that more than 30% of those with Sjogren's test negative.

I am tired of all of this, for some reason. And after over 4 years, I am accepting this neuropathy and how it affects my life. My family still doesn't do a good job of accepting it, however.

I would just like to get on with things and let this part 'go'. I guess we don't get to choose?

Findings:
1. Markedly decreased amplitude of the right and left peroneal and tibial nerves.
2. Decreased conduction velocity of the right and left peroneal and tibial nerves.
3. Increased motor latency of the right and left peroneal and tibial nerves.

4. Increased sensory potentials of the right and left sural nerves.
5. Absent latency of the left peroneal and left tibial F-waves.
6. Delayed Latency of the right tibial F-waves.
7. Delayed latency of the right and left H-reflex.
INTERPRETATION:
1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.

3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

Knowing what is causing it can lead to treatment --mostly with IVIG and/or Rituxan.

Knowing a cause you could eliminate it from your future... vaccines, drugs, toxins.

Knowing what is triggering you ..could lead to some changes in lifestyle and use of specific supplements.

But PN is elusive, and if you are at a point of exhaustion, you don't have to do anything further if you don't want.

If you haven't had genetic testing yet for CMT, you might consider that, or not, depending on what you intend to do with that diagnosis. Since you don't react well to pain meds, the CMT diagnosis would only help you get proper pain treatment and supervision.

It is all just up to what you want and need at this point.

Hi Elaine
 

I feel for you. Possibly could you seek second opinion. I don't know where in North Carolina you live but if you could get connected to a neurology dept at Duke Medical School or some neurology Dept connected to a teaching hospital they usually are on cutting edge.
The reason I say that is I sawv2 neurologist snd got no answers. I got a referral to the hesdache center at Baylor U medical school. I just started having PN for reasons unknown but doctor I am seeing is very meticulous.
Wish yiu the best

Sjogren's syndrome--
 

--is certainly associated with neuropathy and neuronopathy:

http://neuromuscular.wustl.edu/antib...n.html#sjogren

Interesting thoughts!

My neurologist is a Duke University Faculty member, one of the top in his field. We retired to this area precisely because there are two medical research centers and hospitals here. My husband is a retired research immunologist who taught and did research at a university medical center for 25 years in Boston.

CMT is Charcot–Marie–Tooth disease, and highly unlikely since this PN appeared when I was 67. Up until then I rode a bike, learned to ski, could roller skate, dance, take long hikes. CMT is genetic and usually appears long before the age in which mine appeared.

One of the mysteries is that most external causes of PN affect both upper and lower limbs. Yet mine is ONLY in my legs and feet.

And most systemic causes are progressive, and yet mine hasn't changed at all.

I, personally, think that it was the antibiotic I took, OR possibly my Sjogren's Syndrome. And yet there's no way to know.

I DO have IgG infusions, and if the type of PN could be determined, we would know if much larger infusions might help. Although at this point the PN has been around such a long time (relatively speaking) that it may not respond well to any treatment.

Now it's Saturday, and I'm a bit removed from the testing process and the intense meeting with my doctor, so I'm not as exhausted.

I don't think other people understand how exhausting doctor's visits and tests are.

I will do the blood tests next Tuesday, as far from my last infusion as possible, just before the next one.

I am so relieved that all of my spine issues are 'normal for my age' and require no surgery. I'm doing quite well, really. It's just the difficulty moving around, and some of the discomfort in my feet that is disabling.

Thanks, ElaineD

IgG WILL skew lab results for many tests. The half-life of IgG by IV is 21-28 days. This may be different for SubQ since absorption is different, but it is still a blood product from about 2000 donors, so will alter some lab results.

Do you know what they will be running?

Charcot Marie Tooth disease (CMT) symptoms can become evident when you are young, old, or in-between. Or symptoms might never be that evident but you can still pass it on. As of 2008 there were fifty (50) types identified so far and there is no end in sight.

So I disagree with you as I do know some CMTers where the symptoms did not show up until much later in life; myself included. They too could do everything until then. And, by far, not all CMTers have the same symptoms. Symptoms vary greatly even within the same family.

As of now, there is no cure/treatment for any type of CMT. We deal with the symptoms. There is much research being done.

en bloc: I told my Neuro that I would be on IgG by the time he wanted to run the tests.

He said that I should take the tests at the end of an infusion period.

I agree that the IgG will still be in my system! But I think most of what he is looking for has to do with toxins.

I don't know what tests he's running. I'm not the least bit optimistic about finding anything. I think he just wants to cover every base in testing.

MrsD. if it IS CMT, I guess it is what it is, with no cure. Would it appear suddenly and then not have any progression? I went from perfectly FINE to profound neuropathy in about a year and a half. (2009) With no progression since then. I guess genetic testing is in order. My Immunologist has run some genetic testing, but it was mainly around my CVID.

I tried Jarrow Formula Methyl B-12 for about 18 months, at 45,000 mcg/day. Hoping that I would see some improvement.

In fact, I would say my foot drop is worse. Well, I gave it a good try.
And it seems that my Neurologist has NO interest in B-12 treatments. I had thought maybe injections would be more effective.

Since I had a 95% block of my LAD coronary artery ('the widow maker) that was cleared and stented in 1999, I feel that the past 14 years are 'gravy' and tho' they have been filled with one weird condition after another, I have had the joy of many years with grandchildren and friends.

So I think all of this is manageable, in one way or another.

Hugs, ElaineD

FWIW, in my case - alcohol induced - it's only feet - and that's quite common with alcoholics. Not saying that's your cause, just that it's not uncommon to only have it in the feet and/or lower limbs.

Mine is Sjogren's related and limited to profound pain in the feet and mild in the legs...yet nothing in the arms or hands.

I think that is a tad much for B12 dosing. 5,000mcg a day would be more than enough if used every day. (was this a typo by chance?)

Since you suspect Macrobid as a culprit I'd also do acetyl carnitine, and especially the CoQ-10 because of your statin use. Both of these supplements, are suggested for DNA damage.
After 5 yrs one study found CoQ-10 synthesis is damaged by 50% when using statins. It is important for your muscles, and heart to have CoQ-10 to work on energy production by the mitochondria. The new water soluble types like Qunol and Q-gel, allow for less dosing. 100mg a day may be enough, compared to 300mg+ a day for the old oil gel formulas.

You could add in benfotiamine 150mg a day, to enable thiamine. Thiamine has always been historically used for neuropathies. Doctors have dropped it, when gabapentin came out, and that is a shame, because thiamine does work.

Good thoughts, MrsD.

I was using a dosage of the Methyl B-12 based on some NIH research. And yes it was 45,000 mcg a day. It didn't hurt me, and that was the dosage based on weight that relates to the NIH study on rats. If I were a BIG RAT that would be the right amount. But the neuropathy has to be the same that the rats had, I it still isn't clear what my neuropathy is.

I still have many bottles, so can go to one a day easily!

I've taken Co-Q-10 for years, probably at least 14. Right now I take 100 mg a day.

I took acetyl Carnitine daily until recently, when a Harvard article linked Carnitine to heart disease. New study links L-carnitine in red meat to heart disease - Harvard ..http://www.health.harvard.edu/blog/n...e-201304176083

http://ods.od.nih.gov/factsheets/Car...hProfessional/ A 2013 study that included both rodents and 2,595 humans undergoing elective cardiac evaluation found that L-carnitine is metabolized by intestinal microbiotia to trimethylamine-N-oxide (TMAO), a proatherogenic substance that is associated with cardiovascular disease risk [24].

Since I have severe CAD, my LAD was 95% blocked, I think I'll pass on the acetyl carnitine.

I can add the Benfotiamine, as it is well researched and discussed on several NIH sites, as well. THANKS!

en bloc, It's interesting about the Sjogren's and PN. It's just that I did NOT notice the PN as it developed. I was being tested for headaches by a Neurologist when he watched me walked and saw my PN. I was falling and couldn't ride my new bike, but did NOT KNOW it was my feet and legs. The PN by then was profound. But it has not changed one bit in 3.5 years. It is just odd to me.

Also I have never tested positive for Sjogren's. My neurologist said last week that the fact that I am also Immune Deficient may be the reason why I don't test positive even tho' I do have autoimmune conditions. About 25% or more of people with my type of Immune Deficiency have autoimmune conditions as well.

Ah, Wide-O, I'm not an alcoholic, but I am a compulsive overeater and I'm in OA. I know PN comes from alcohol consumption and a host of toxins, as well as diabetes, and some genetic conditions. My guess is still either the Macrobid or my autoimmune condition(s).

Today I'm dealing with the beginning of a 'reaction' to the new IgG product infused on Thursday. I was allergic to the first product,I started in August, and am trying a second. It's not looking good for that one either.

My body is NOT cooperating with me in any way these days! But I must be kind and loving towards myself and my body. It is 'me' and has taken me far on this journey.

Hugs, ElaineD

Hnpp
 

Just a thought, here is a very good site on Hereditary Neuropathy with Liability to Pressure Palsies (HNPP). That's another one to possibly check out.

http://www.hnpp.org/

Well, I don't think much of the B12 is really absorbed in those high oral doses.

This is why:
Here is a table showing very little change from 500mcg to 1000mcg in a study done on absorption:
http://www.ncbi.nlm.nih.gov/pmc/arti...able/T1/#TF1-4

I think for passive absorption, there may be a ceiling effect. Not that the 45,000mcg is "harmful" unless you have Polycythemia vera. But there is another limiting factor and that is transcobalamin capacity which is not unlimited either. Transcobalamin is the carrier in the blood. It is thought that excess B12 could float around, without it, but I don't think that has been proven yet. There have been studies in Japan on 40mg dosing for MS patients, that showed no toxicity.

Because of the risk of vitamin dependency on ultra high doses, you might want to taper down to the 5,000 if you choose to change it. Some vitamins create a "dependency" state at high doses. Vit C has shown this. So if you decide to come down, do it in 5,000 mcg steps every 2 weeks or so. Dependency means the body adjusts to the ultra high intake, and reacts with deficiency symptoms when the ultra dose is withdrawn. I don't know for sure that B12 does this, but it could...so you would want to avoid that shock to your system.

I don't think the carnitine study is that alarming yet. More work needs to be done and more confirmation etc to become useful.
With mitochondrial damage present from toxic exposures, carnitine is very useful to help with energy production. But that is your choice.

Elaine D
I noticed you mentioned regarding you physical capability that you did not have scale to compare to.
I was just wondering if you could have your neurologist reffer you to a good Physical Therapist and Ocupational Therapist,

They could do a assessment and there would be scales etc to do performance compearasm.
This way you could from time to time do progress reports

Good luck

Synnove

ElaineD,

I have never tested positive (labs) for Sjogren's either...yet my biopsy was positive. However, even my biopsy was different then normal as the lymphocytes were not in large numbers as they would be in positive diagnosis, but by the time I was tested there was complete destruction of the salivary glands and replaced with scar tissue, so they consider the biopsy as positive and Sjogren's at end stage. I too am Immune deficient and have been told that this can alter my testing.

If you did not know your PN was developing, you likely have some sort of proprioception issue...especially if you were falling. Have you been tested for this? Can you tell the direction of your feet without looking at them?

I have significant proprioception issues, but it seem to come on fairly quickly...with balance, falling, sensation, etc. The pain in my feet though was slower.

What type of reaction are you having to the IgG? Hopefully, it is just a minor side-effect that will pass. IgG has a wide array of side-effects that can occur...some can be tolerated, others cannot.

Hi MrsD. These are the numbers from the period when I was taking mega B-12.

July 2012
Component Standard Range Your Value
Folate (Folic Acid), Serum >6.5 ng/mL >24.80
Vitamin B-12, Assay Serum 123 - 730 pg/ >1500

I stopped taking the extra B-12 about a year ago, not long after the tests above. My PN just wasn't changing at all, and I got tired of taking so much B-12, and paying for the sublingual type, as well.

I also take D-Mannose because it prevents adherence of e-coli to the lining of the bladder. I have Interstitial Cystitis and chronic UTIs.
N-acetyl-Cysteine because an Otolaryngologist said it might help my Meneiere's (and 4 years later some hearing returned in my right ear. Cause or chance? I take it just in case!).
I take Turmeric for pain and save Tylenol for extra pain since I can't take any opioids.
I take iron for anemia.
Mucinex
Potassium for leg cramps
Vitamin D
Fish Oil (2800 MG a day on the advice of my cardiologist)
Alpha Lipoic
a Multi vitamin
Aspirin - 81 mg
Lipitor (80 mg)-59
Atenolol (50 mg)
Triamterene HTCZ (75-50)
Pilocarpine (15 mg)
Nasonex
Cymbalta (60 mg)
Omeprazole (60mg)
Naproxen Sodium
Estrogel topical
Testosterone topical
Denavir topical for cold sores
Nature's Tears spray
Ultra Systane eye drops
a couple of RX for a recurrent fungus on the bottoms of my toes! I am subject to all sorts of infections due to my Immune Deficiency.
I have a large capacity cold steam humidifier running in the bedroom and there's also one on the furnace. Once the heat comes on, these are essential.

I started on Gammagard 10% IgG on Thursday, but think I'm going to be having a reaction too great to continue it.

Mainly what I'm treating with the medications is dry eye/dry mouth and sinus congestion, my coronary artery disease, and pain

My diagnoses are CVID, Sjogren's/Sicca, CAD, IC, Anemia, Blepharitis, PN, Meniere's with hearing loss, severe osteoarthritis, DDD in my cervical spine, Diastolic abnormality, calcified aortic valve, and Fordyce Spots. The last one is a self diagnosis but checks out and is totally benign.

I have begun all of the above, except the Lipitor since 1999. Before that I had few conditions. Tons of eczema and 'allergies' and respiratory stuff as a child, but outgrew the respiratory stuff to a large extent by 12, and the eczema by at 27.

That is quite a list. I hate to bring this up then, but you need magnesium too. The acid blocker blocks mag absorption, and
the diuretic depletes magnesium.

Best for you with all those medications would be the lotion/topical type of magnesium. Morton's is inexpensive and available at WalMart and newly at Walgreen's and also on Amazon. Morton's Epsom Lotion. I would apply it where you
get the leg cramps, and also on your inner arms for absorption into the blood.

Get too low in magnesium and you could have a cardiac event.
This may help your pain levels too, because magnesium is a NMDA pain receptor antagonist. Low magnesium also causes muscle cramping.

Magnesium, B12 and Vit D are the big 3 simple solutions to the most common problems people face today. Up to 70% of people in the US are low in mag. Vit D is approaching 70% now. And B12 is about 40%.
So I do think you would benefit from magnesium considering the drugs you use today.

Labs differ in the calibration for B12 measurement. Yours stopped at 1500, but the lab at my hospital went to 1999... which is where I tested for 3 mons of 5mg methylB12 Puritan's brand. Typically labs don't go over 2000 from what I have seen posted on the net.

Hi en bloc:

I didn't know my falling, inability to ride my new bike, falling backwards out of the shower onto my BACK twice at the gym, dizziness, any of it was PN.

I just thought it was 'getting old' or whatever! My health was deteriorating badly and it was a very confusing time for me.

I saw a neurologist in 2009 about chronic headaches, and he had me walk. That was that. The EMG results from January 2010 were exactly the same on Wednesday of last week:

Findings: i. Markedly decreased amplitude of the right and left peroneal and tibial nerves.
2. Decreased conduction velocity of the right and left peroneal and tibial nerves.
3. Increased motor latency of the right and left peroneal and tibial nerves.
4. Increased sensory potentials of the right and left sural nerves.
5. Absent latency of the left peroneal and left tibial F-waves.
6. Delayed Iatency of the right tibial F-waves.
7. Delayed latency of the right and left H-reflex.
INTERPRETATION:
1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

I cannot walk any distance, it is too much work. I cannot stand for any time. I stagger from side to side. If someone is behind me it upsets me.

The reason for this is that my perception as relayed to my brain is scrambled. If I step on an acorn, my legs send that message, but the message is scrambled and my automatic reaction is that I'm falling into hole.

But if I see something I have to step over, my brain tells my legs, but the message is scrambled, and I don't raise my foot the right amount.

I have extreme right foot drop, and some left foot drop. So my toe doesn't clear the ground when I walk, and I stumble.

I cannot back up, step side ways, or weave among people.

I have a cane, but don't use it because I don't really walk much. I use the shopping cart at the store for balance, and exercise in the water and on the equipment that I can sit on at the gym.

My toes are dusky purple because the nerves to the blood vessels don't work properly. My feet are usually icy cold, as well. In fact the only thing I really noticed was how cold my feet were, and I asked my cardiologist for a peripheral vascular test in 2007 because I thought I had circulation problem due to cholesterol deposits. My circulation is better than normal!

I have to be careful with my feet because I don't feel damage. And yet I still have nerves that feel like I have a shard of glass in my heel! I even tried to find the glass 5 years ago! I was so sure there was something in my heel. Now I know that it is nerve pain.

I take Cymbalta specifically because it is on label for nerve pain.

My reaction to Hizentra20% was profound fatigue, pain, depression and itching and burning skin, tingling lips, itching eyes, and this got stronger and lasted longer each week. The site of the infusions was NO PROBLEM. The problem was systemic and developed a couple of days after the infusion.

However by the 9th infusion it didn't stop and I had the 10th infusion while in that state, after the Benadryl wore off at 2 pm I woke up in true developing shock, itching burning swelling, tingling all over. But didn't need the epi pen.
Just toughed it out. It went away about 4 days later, but I discontinued the Hizentra.

I started Gammagard 10% on Thursday this last week. Again, no reaction at the site of the infusions, but fatigue, headache, finger pain, and then itching and burning set in Saturday. I feel very weak and shaky but Benadryl is stopping the worst of the itching and burning for now.

I've never had IVIG. My body just doesn't play nicely with medications, I guess.

I was so hoping the Gammagard 10% would be the magic answer.

What do you infuse? I have CVID.

my numbers are:

G 388 range 588-1573 4/22/13
A 106 range 46-287 4/22/13
M 18 range 57-237 4/22/13
IGE 5 range 4- 269
G Subclass total 402 range 767-1590
G Subclass 1 198 range 341-894
Subclass 2 124 range 171-632
Subclass 3 18.1 range 18.4-106
Subclass 4 – 5.6 range 2.4-121

I had only one immunity from the Pneumovax 21.

Hugs, ElaineD