Peripheral Sensory Polyneuropathy. NGC

[Muzz]

Because this an eclectic mix of our population my wife suggested that I post here for input.

Over five years ago now I suffered severe trauma in tearing the hamstring tendon off the pelvic area. Along with a blood clot, it also triggered an auto immune response.  The steroids that they put me on caused hernias and catastrophic hip failure. Now, it appears that with the PMR having faded away there is a another to take it's place.

About 8 months ago the dreaded "white fingers" of Raynauds came back after many years, however this time it was not cold related. This was quickly followed by numb finger tips, skin crawling, tingling and then pins and needles which became painful enough that sleep was a very broken affair.  After many MRI scans, blood tests and nerve transmission tests the neurologist came up with this PSP diagnosis. Other than this I am fantastically healthy! ::) No heart, diabetes or Rheumatic fever problems.

About all she could tell me about it is that as I get older ::) my feet will stop telling my brain where they are and I will start falling over.  She has prescribed a low dosage of an early anti depressant; one of it's side effects is that it acts as a nerve blocker to get rid of most of the pins and needles and also helps me sleep.  And yes, it appears to affecting ALL extremities.

What I would like to know, and of which there is a dearth of info on, is the speed at which this progresses, how bad does it get, does it get better by itself if there is no known reason for it, and anything which may help. It is a bit scary in a way to wake up at night with three fingers and a thumb completely without feeling but still being able to work them.

Anyone else on the forum have it?  Any info much appreciated.

[Sasquatch Jim]

  On me the pins and needles and occasional numbness began in the late eighties.  It got bad enough that I quit riding, sold my Paris Dakar and hobbled on a cane in the late nineties.  Started on B-12 injections.  Within 6 months, put away the cane and bought another motorcycle.  It gradually got worse again over the years so I became more dependent on my sidecar.  About 2009 the Social security declared me disabled.  A couple years later the VA declared me disabled
and I began occasional use of a wheelchair.  About 16 months ago the VA upped my disability to 100% as I was spending most of my time in the chair and my legs were 60% paralyzed.  Below the knee the muscles don't work and now the thighs are getting weak too.  i exercise a lot so I have the arms of a gorilla but the fingers have had the needles and pins and occasional numbness for 2 years or more now.  How is that for a time line?
 Does that tell you anything?  Ask your doctor if the B-12 injections will help you.  Without them I was supposed to die about the turn of the century.
 I guess that means I am on borrowed time now, but I am still above ground and doing things.  Have your doctor explain your prognosis so that you can plan your time to your best liking.

[redrider90]

Because this an eclectic mix of our population my wife suggested that I post here for input.

Over five years ago now I suffered severe trauma in tearing the hamstring tendon off the pelvic area. Along with a blood clot, it also triggered an auto immune response.  The steroids that they put me on caused hernias and catastrophic hip failure. Now, it appears that with the PMR having faded away there is a another to take it's place.

About 8 months ago the dreaded "white fingers" of Raynauds came back after many years, however this time it was not cold related. This was quickly followed by numb finger tips, skin crawling, tingling and then pins and needles which became painful enough that sleep was a very broken affair.  After many MRI scans, blood tests and nerve transmission tests the neurologist came up with this PSP diagnosis. Other than this I am fantastically healthy! ::) No heart, diabetes or Rheumatic fever problems.

About all she could tell me about it is that as I get older ::) my feet will stop telling my brain where they are and I will start falling over.  She has prescribed a low dosage of an early anti depressant; one of it's side effects is that it acts as a nerve blocker to get rid of most of the pins and needles and also helps me sleep.  And yes, it appears to affecting ALL extremities.

What I would like to know, and of which there is a dearth of info on, is the speed at which this progresses, how bad does it get, does it get better by itself if there is no known reason for it, and anything which may help. It is a bit scary in a way to wake up at night with three fingers and a thumb completely without feeling but still being able to work them.

Anyone else on the forum have it?  Any info much appreciated.

There is so much that neurologist do not know. They just know how to take some tests and call your problem a name that really describes the symptoms and not the etiology of your problem.  You say you tore a tendon and then had a blood clot and then that caused an autoimmune disease. I assume you a parroting what the docs told you. Who's to say you didn't have an infectious disease or an autoimmune disease that caused the hamstring tear and resulting blood clot. The hamstring is quite large and when you tore it , it bleed which could have led to the clot. There are many things that can cause these problems. Toxic mold exposure, infectious diseases like lyme and bartonella. I assume the pinky finger is not the numb finger.  As for raynaud's Lyme can cause it , magnesium deficiency and a whole host of other things. I've been  through the mill cause 10 years ago I was exposed to mold with about 20 neurological symptoms. My wife eventually got the similar symptoms but not as bad and I found a guy who tested all sorts of hormones and inflammatory makers and said I had mold in my house. We had the house tested it and was full of toxic aspergillus. The neurologists never tested for mold.  Then I  was treated for prostate cancer and never got my full energy back.  Some recent special brain scans showed atrophy in an area of my brain the research shows is consistent with a previous exposure to Lyme disease. I am taking some very powerful drugs that have been shown to regenerate the areas of the brain that have atrophied.
One thing for sure neurologists are not very useful and western medicine knows very little about autoimmune diseases. Quite a few autoimmune diseases are triggered by infections and or environmental exposures. Monday I am sending  a few tubes of blood I have frozen in my freezer in dry ice and 24 hour air it to a research facility  to have some investigation on my RNA (NOT DNA).
By the way you did not mention are Rx drugs you are taking. Drugs can cause all sorts of issues and if you are mixing them with over the counter supplements it can make matters worse.
You have a lot on your plate.

[Muzz]

Jim, is PSP actually what you have?  Have just gone down to a 4 day working week and I am retiring at the end of this year. I want to able to do a few things before things get too bad.  Evidently, the major motorcycle wholesaler here in Christchurch have a fitting to go on the handgrip so that the throttle does not shut off when the twist grip is released.  Might have to look at that in the near future.

Redrider. I did not tear the hamstring, I ripped the tendon off the Ischial Protruberance while waterskiing.  Did not do the splits, just the pressure as I was just about up caused it to tear.  It actually let go as I was walking in the door at work two days later. That's when it REALLY hurt!!! The blood clot formed in my calf after a few weeks, and it was a shallow vein jobby, not a deep vein. Hurt like hell and was on rat poison for 6 months.  Because the tendon was within 25mm of the attachment point they did not operate.  Got a 2nd opinion from the #1 here in Christchurch and he confirmed the decision.  Because I was not allowed to move or put any weight on that leg, it was caused by blood pooling.  Incidentally, the auto immune development was not a parroting of the doctor.  Two doctors did not know what the hang I had.  Rheumatologist came up with the fact that it can be triggered either by infection or trauma. The Prednisone he put me on caused major problems with further weakening of tendons and muscles, and the extremely rapid collapse of the hip.

Lymes disease.  Don't have it here (thank goodness). Don't have a tic problem either.

Don't have any magnesium or B12 deficiency.

Had not had any infections, even a cold, for about two years before hand. All tests say I am in fabtastic health.

As far as meds go, I am taking 75mg of voltarin and 20mg of Norflex to control tight and painful thigh muscles. Got those when I got the PMR 5 years ago and they tend to go beserk if I go off them. MRI scan shows no problems with the entire spine and spinal cord.  Amitripyline (low dosage) is the nerve blocker that the neurologist put me on.  Worked like magic.

Our house is completely mould free and well ventilated.  Problems happened before the earthquakes so not caused by airborne greeblies.

It would appear that a lot of PSP cases do not have any cause at all, it just happens. <shrug>

Thanks for the replies to date.

[krglorioso]

Muzz:  I have neither your disease nor am I a clinician, but I am a retired university medical school administrator.  Please seek a neurologist at a university medical center.  All neurologists are not equally qualified just as all motorcycle riders are not Valentino Rossi!  I don't know what's available in your immediate area and you may have to travel, but seek out a qualified specialist in the neurology department of a major university medical center..please.  These doctors are specialists in the rare and unusual diseases.  Their academic careers often require the publication of scientific papers bringing new knowledge to their respective fields.  For this reason, they do not dwell excessively on "mundane" problems, but are seeking constantly to find new answers to new questions. 

You should also use the Internet to familiarize yourself with every possible aspect of your disease.  There may even be an Internet support group, something like Wildgoose Chase except for your illness.  These support groups are often major sources of information about top doctors, latest treatments, etc.  Don't leave it all to the medical types.  Be your own advocate and please report to this forum about your progress.

Ralph

[Kentktk]

Always remember a medical student who was top in the class and a medical student who finished at the bottom of the class have 2 things in common, they are both called Doctor.....scary  :o

[Sasquatch Jim]

 Mine is caused initially by pernicious anemia.  Poisons have ruined my digestive ability to process B-12.  This causes the nerves to die off
 starting in the extremities and working towards the core. neuropathy is the death of nerves.  In my case, the ones that operate the muscles of the legs
 and relay sensation to the brain.  Along the way I have had bone pain until those nerves died too.  Muscle spasms and cramps, the worst were the godawful hamstring cramps.  I drink a shot of balsamic vinegar to control cramps.  Yellow mustard also helps.  In severe cases, a muscle relaxer drug.
 There are different causes for neuropathies but what they all have in common is the death of nerves which means less ability with the affected part.
 Use the affected part as much as you can, exercise etc.  This will slow down the death of the nerves and extend the time you have the use of the affected part.
  My legs are has beens, but I am exercising bthe arms and torso vigorously to keep them as long as I can.  Suggest you try the same.
 If you are still having spasm and painful cramp try the balsamic vinegar.   It was recommended to me by my cousins' wife who has been a nurse in a cardiac unit of a large hospital for about 35 years or so and knows many unconventional medical things as well.

[Muzz]

Muzz:  .  All neurologists are not equally qualified just as all motorcycle riders are not Valentino Rossi!  I don't know what's available in your immediate area and you may have to travel, but seek out a qualified specialist in the neurology department of a major university medical center..please. 

This one is supposed to be the best in Canterbury, if not the whole of NZ,

You should also use the Internet to familiarize yourself with every possible aspect of your disease. 
Have been looking for months now,  which is why I am here,  Never failed me yet!

 There may even be an Internet support group, something like Wildgoose Chase except for your illness. 
Have not found one to date that actually have meaningful answers; all just seem to have the same questions but if it is idiopathic then there are basically no answers,  Just minimise the pain.

Thanks Ralph, will keep on looking.

[Muzz]

Mine is caused initially by pernicious anemia.  
Bugger.  Have been checked for that;  all clear.
  In my case, the ones that operate the muscles of the legs  and relay sensation to the brain.  Along the way I have had bone pain until those nerves died too.  Muscle spasms and cramps, the worst were the godawful hamstring cramps.
Hmmm. I have had the tightness/cramps for 5 years now.  The damaged hamstring has cramped about 5 times; for 1/4 hr I am on the floor dry retching.  My darling is getting the hang of getting the hot wheat bags out and giving massage.  Muscle is strained and sore for the next two weeks.  We have balsamic vinegar. Is that shot straight or do you dilute it?  The Norflex I take is to try and minimise the spasms.
  
 Use the affected part as much as you can, exercise etc.  This will slow down the death of the nerves and extend the time you have the use of the affected part.

I do about 1/2 hr. every morning, first on the cross trainer to warm up, then some stretches followed by leg lifts, leg curls and some different types of arm and shoulder exercises on the gym machine I have.  The job I do involves climbing ladders all day (a lot of ladder work) so I have to balance my exercises with surviving the day.
  

Thanks Jim. Will try the vinegar. The tight legs leave me knackered by the end of the day.

[guzzibaz]

Hi Muzz
My brother suffers this debilitating disease as well.
His seemed to start after an badly done appendix op and has grown much worst over the years.
He has lost most of the feeling in his right foot and his left is not much better.
His hands are now numb and he hasn't had a full night sleep in years.
He rides a Ducati but we have eliminated that as the cause even though it must play a part ;)
But seriously he is also on all sorts of drugs to try and relieve the pain.
I will pass your message on and perhaps you can discuss it in more detail with him. I think he is more advanced then yourself.
Baz

[luthier]

First very sorry to hear this Muzz.
Second, though you discounted Magnesium this prevents those horrible cramps. I take it sporadically, my wife takes it every day. If I get any vague inkling of a cramp I pop a couple.
Third, go to a good naturopath and get  all other relevant cell salts that your body needs. There are 12 cell salts that we need to be healthy. It's pretty easy for this to get out of balance, specially if you drink beer and port like I do.
As far as waking with numbness in fingers, I'd say if you sleep with a bent arm that will happen, don't panic, I get that too and it's been happening for about 20 years or more.
Give the hands a good wriggle and get over it.
Don't let the witch doctors of our medical society point the bone.
Old age wasn't meant to be enslavement to f'in doctors.
I had a mate a couple of years back who panicked about all this kinda stuff. They found him hanging in his wardrobe. Really don't go there, get away from all this pathological stuff and spend more time on that nice old Trumpy.

O yeah , one other thing, drink more beer. It flushes the kidneys and clears the mind.

[redrider90]

Redrider. I did not tear the hamstring, I ripped the tendon off the Ischial Protruberance while waterskiing.  Did not do the splits, just the pressure as I was just about up caused it to tear.  It actually let go as I was walking in the door at work two days later. That's when it REALLY hurt!!! The blood clot formed in my calf after a few weeks, and it was a shallow vein jobby, not a deep vein. Hurt like hell and was on rat poison for 6 months.     Because I was not allowed to move or put any weight on that leg, it was caused by blood pooling.

Well I responded to what you wrote " tearing the hamstring tendon off the pelvic area. Along with a blood clot, it also triggered an auto immune response.  The steroids that they put me on caused hernias and catastrophic hip failure"'
Now that you tell the story behind how you tore the hamstring it all makes sense. I thought/assume you had experienced a spontaneous rupture because you did not mention that you were water skiing. Rupture of the hamstring off the ischial tuberosity while water skiing is  the #1 reason for the injury. The blood clot was a result of the injury; it does not matter if it was a deep vein or superficial it was still a clot that had to be treated hence your "rat poison comment"  

" Incidentally, the auto immune development was not a parroting of the doctor.  Two doctors did not know what the hang I had.  Rheumatologist came up with the fact that it can be triggered either by infection or trauma. The Prednisone he put me on caused major problems with further weakening of tendons and muscles, and the extremely rapid collapse of the hip"

I am confused as to how you got to the autoimmune disease. Did someone actually put you on prednisone while healing from the tendon rupture or was this after the injury healed. Your medical history is hard to understand.  

Lyme disease  follows ticks everywhere. For decades docs in the southeastern US have said that it did not exist the a 12 state area. Then 2 years ago the University of North Florida found 2 new species of Lyme that lived on in the lone star tick in the SE US. This species did not live in the NE US where a different tick carried a different species. The story on lyme is far from over. Not to mention there a many other infectious diseases carried by ticks and fleas.....

Our house is completely mould free and well ventilated.
Moisture content and not ventilation is what causes mold. That is why a lot of beach houses in the warm moist climates in the US are full of mold. Once you get > 50% water vapor content mold appears. Mold infestation occurs from any number of sources but they all have on thing in common : H20 and even a dessert house  a minor water leak can make a house very sick. There is one toxic mold that grows in low humidity. Mold is a huge problem and just now beginning to be understood.  

It would appear that a lot of PSP cases do not have any cause at all, it just happens. <shrug>

PSP does not just appear. There are many triggers that cause neuropathies from infectious diseases to environmental toxins, food allergies and others.  The problem is medicine doesn't understand those triggers.


Thanks for the replies to date.

[Orange Guzzi]

I take zinc picolinate daily to help with the cold pain, tingling, crawling skin, ghost itching and numbness. Just started this past October.  This is not a cure all, but it helped on a scale of 1 non and 10, 100% cure, about 5.  I have learned to live with the spinal neuropathy I suffer from.  Takes brain power to redirect my focus away from the problems.

[johnr]

.....I am taking some very powerful drugs that have been shown to regenerate the areas of the brain that have atrophied.....

What drugs would these be if you don't mind me asking?

[johnr]

You do seem to be in an ongoing medical battle Muzz. I wonder if your job with heating systems etc may have exposed you to some unpleasant molds?

Please seek a neurologist at a university medical center

You could arrange to do this maybe in Dunedin after the ChCh swap meet on your way down for the Tatley Rappit.  (hint, hint.  ;)  )

[Sasquatch Jim]

  I drink the balsamic vinegar straight and chase it with water.  Since it is going to mix with the water inside anyway, diluting it probably won't make any difference.  Just do not dilute it with anything that can be an antacid like soda.
 If you are out of balsamic vinegar, a mouthful of yellow mustard is almost as good.  In mustard the turmeric is the active ingredient.

[Petrus Rocks]

I've had peripheral neuropathy  since 2010.  started in my right foot after back surgery for stenosis. 

Diabetics have this problem too but I'm not diabetic.

Right now front of rt foot, two toes on left, fingertips off and on.  can't tell you how many times I've fallen flat on my face.

So far I've taken Lyrica and gabapentin for nerve pain. 
Helped some but made me feel dopey. 
Had a B12 shot and it did make a difference.  I recommend trying that.  I'm getting another.

Therapy taught me to lift my feet higher while walking and pay attention more to where I'm walking.
No cure available that I know.  At the current rate  I think I have 15-20 years before my feet are entirely numb.
Sorry I can't be more helpful.

[redrider90]

What drugs would these be if you don't mind me asking?

vasoactive intestinal peptide VIP
http://www.survivingmold.com/docs/VIP_published_3_2013.pdf

http://ajpgi.physiology.org/content/304/11/G949

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2967653/

http://www.ingentaconnect.com/content/ben/emiddt/2012/00000012/00000004/art00004?crawler=true

https://www.survivingmold.com/community/as-i-see-it-lyme-disease-and-cirs

[Muzz]

Interesting thought John.  We use compressed air to blow out (plaster) dust as an absolute last resort.  Almost always vacuum and flush.  If I do blow out a unit I always have a mask rated for toxic dusts etc.  However, some of the houses I go in to are not airy and well ventilated like our own.... ::)  Have put reg on hold for 5 months so that the tattly Rappit is a definite goer at this stage.

Some interesting reading there thanks Redrider,  Will send a pm.

Petrus, thanks for that info. Real world stuff is what I am after.

Shite Sasquatch, am I allowed to chase it with a Scotch? ;D

Orange,  I take magnesium along with a multi vitamin and fish oil as a "can't hurt and it may help". :-\

Thanks to all, I really appreciate it.

[Muzz]

 I drink a shot of balsamic vinegar to control cramps.  Yellow mustard also helps.  

Shite Jim! How do you do it????  I ended up diluting it with water to get it down.  Now it's :pop :pop wating time. Have to get another bottle anyway.

I've had peripheral neuropathy  since 2010.  started in my right foot after back surgery for stenosis. 

Diabetics have this problem too but I'm not diabetic.

Right now front of rt foot, two toes on left, fingertips off and on.  can't tell you how many times I've fallen flat on my face.

So far I've taken Lyrica and gabapentin for nerve pain. 
Helped some but made me feel dopey. 
Had a B12 shot and it did make a difference.  I recommend trying that.  I'm getting another.

Therapy taught me to lift my feet higher while walking and pay attention more to where I'm walking.
No cure available that I know.  At the current rate  I think I have 15-20 years before my feet are entirely numb.
Sorry I can't be more helpful.

Went down to the doctor this morning and had a B12 shot.  Does this need to be done every month or is it one shot type stuff?
Baz,  thanks.  Made contact with your bro.  I feel for him man. 

[dilligaf]

Muzz:  I have neither your disease nor am I a clinician, but I am a retired university medical school administrator.  Please seek a neurologist at a university medical center.  All neurologists are not equally qualified just as all motorcycle riders are not Valentino Rossi! 
Ralph

You got that right and it's  a hard lesson to learn. ::(  :BEER:
Matt

[Sasquatch Jim]

 As for the vinegar, I have learned to like it.  I shoot myself with B-12 every week.  Back in 98 I was started on once a month.
 As things progressed frequency was increased until once a week it has been for 6 or 7 years now.

[Testarossa]

My mother had something like PSP in the late 60s, when she was about 42 years old. Neurologists couldn't tell her the cause, but they explained it as a failure to restore collagen in the nerve sheaths and simply called it a neuropathy. She lost feeling but not motion control in her hands and feet. Walking was possible but not completely steady; she had to quit cooking and teaching. Changed careers and got a masters degree in library science and wound up running the state's main library for the blind and handicapped.

In Mom's case the condition stabilized after about five years and was not life-threatening. She died of breast cancer at age 57.