Toxic Drugs used with good effects

A Drug made specifics for MS  patients, for increased walking speed. Could Ampyra do all that? It is in a timed released pill that is taken every twelve hours.

dalfampridine, also known as Ampyra, is made specifically for MS and walking.  It is derived from a toxic substances used to kill birds, or deter them from parking lots, or unwanted areas.


Ampyra helps electrical signals move better along the nerves in your brain and spinal cord. When you have MS, your nerves lose the protective coating, called myelin, that helps messages zip up and down your body.

Ampyra does have the same active ingredient as an avian poison. Many  drugs are based on toxic substances, such as rat poisons. Experimentation has even been done with spider and scorpion venom to treat various diseases. botulinum  is a deadly bacteria.  It's the way they are dosed and tweaked that make them safe to use as directed.

You also have to keep in mind, we are not birds or rats. We can test our drugs on animals, but sooner or later, those tests move on to humans..

Something toxic to them may be beneficial to us or vice versa. Look at how many things we happily and safely eat that could kill our pets...things like chocolate, avacado and grapes, for example.

what can kill or harm one animal ( a bird in this case) doesn't necessarily have to kill or harm another (human). 4-AP, the compounded in original version of Ampyra (still available) has been safely used for many years.

Hamlet, Shakespeare said, "There is nothing either good or bad, but thinking makes it so." Funny how the name attached to something turns it either good or bad.

Chemotherapy for cancer treatment is a kind of poison, but it's fine-tuned for the purpose and, although it makes people sick by itself, people wanting to survive cancer are willing to to take poison to defeat a greater evil.

Nicotine has been used as an insecticide, and ethanol can be poisonous, yet people smoke and drink without much concern about the poisonous effects because they like the other effects they get from those chemicals.

In a parallel life, 4AP is used as an avicide -- bird poison. But in controlled doses, the neurotoxin effect that kills pigeons can be used to counteract the effects of demyelination in humans. When used unwisely in humans, or in particularly susceptible individuals, 4AP and Ampyra can cause seizures. That's a lesser effect of how it kills birds. (Ever stop to think about how insects die when you use bug spray on them?) But when used in a controlled way, the same chemical allows people to walk better and resume doing things they couldn't do otherwise.


But 4AP's double life as a killer and a helper isn't much different than that of botulinum toxin.

 Botulism  for clostridiym botulinum can kill people, but when the toxin is refined and used selectively and appropriately,  such as onabotulinumtoxinA (Botox), can relieve spasticity and make people's lives significantly better.

Botox has risks, and those risks have to be weighed against its benefits. Ampyra is no different.

Brain & Life, the April/May 2018 has a great article.
Brain&Life


A must read,  on how it can relax muscles, as brain signals, which are damaged by MS, sending the nerves), to contract.

I do get Botulism Toxin injected into both calfs,  into my neck and shoulder muscles since the beginning of MS, done by my Neurologist.
 Ampyra has also helped keep me walking at a faster speed, and  has helped in other ways to be explained.


Thanks for reading
JoeY

Spasticity

Most people with MS will experience Spasticity.  There are many medicines, and names for similar ones.  I was titrated up on Baclofen quite quickly to address my calves and muscles being stiff. 10 mg, eight times a day maxes the amount Drs. prescribe.

 Baclofen has a short life span, so this why you are always taking a pill so many hours a day

I found spasticity to turn up a few notches at night time, this keeping me awake.  legs stiff, if not Charlie horsed, or vibrating from the muscles. I would have four tablets to take at night, along with gabapentin and lyrica.

  I was offered a Baclofen pump to be installed, but knowing after reading George's blog, I was quite against a Baclofen pump.   This was refused seven years into my MS.  Judy  writes a memorial about George, The Geek From Detroit. He will be missed.

Yes, I will jump around in the years, as easiest way to explain things, and things I know now, but did not know by doing much research.

Botox, also known as onabotulism type A, was also started as treatment early on.   the damage being done by my brains myelin sheath was causing nerves that control the muscles to mis-fire.

Many muscles are used to control each movement in the body. The Botox was injected into both calf muscles, as I was Having to tell the right foot to walk step by step. This treatment was started at The beginning, to try to slow The MS down. Botox was also injected into the neck muscles, and is also used for migraines in the forehead.  It's life span worked 62-64 days on me, but our government only allows injection every 90 days.

The Right leg and foot had turned to a three o'clock position on me. I walk with a cane as of today.

But the position of the foot leg pointing to This awkward position  caused  spasms, Charlie horse on both legs, and toes to curl under or outwards.  there was no room to add more baclofen to help.

The Botox helped.

A New medicine, ACTHAR.   https://www.actharmsrelapse.com  https://www.actharmsrelapse.com

  was used to try and slow the MS down. Injected into the thigh muscle for five days.

"H.P. Acthar (repository corticotropin) Gel is an adrenocorticotropic hormone used to treat relapsing multiple sclerosis (MS), infantile spasms, and nephrotic syndrome (a collection of symptoms that indicate kidney damage). "
Acthar

Achtar side effects

 My partner, Wil, had the fun of injection of the three inch needle.  I wish the insurance was not as stingy on this medicine, as I would ask to try it a few more times over the years, but prednisone would be used instead, as insurance companies like to play Dr. Giving you steroids instead.


The Next newest drug, made especially for walking was added to my concoction of daily meds shortly after, and one my next article talks about Ampyra, and the  Botulism (botox) being injected

Thanks for reading
JoeY

Vitamin D, New Doctors

Months seemed to pass quickly. I was now seeing two neurologist. My main one who gives me Botox into my calves and neck, every three months, and a New Neurologist  at UC Davis. She covered all the neurological test, and timed walk. She would see me about every six months, when she was not going over me as patient "X" to her students.
She did a vitamin D test, which came back low enough for Rickets

Rickets is a condition that results in weak or soft bones.  Vitamin D is found Low in many people that have Multiple Sclerosis

A Endocrinologist from UC Davis was brought in board, as Vitamin D, is also a Hormone.  Since I was also on Testosterone Therapy, which also can be low in multiple sclerosis,  She  would begin to monitor the whole endocrine system.

Slowly adding Vitamin D3, in hopes to get me to 80-100 range neurologist wanted me at.

Vitamin D can be tricky. To much, can leach calcium from your bones, and enter blood stream, or cause kidney stones. It took months, monitoring, the level every three months.  Gallons of urine were brought in, blood test, and her slowly raising levels of vitamin D after the tests.

 Dr.-coimbra's MS-protocol was going on in trials with good results in other countries, helping slow down Multiple Sclerosis, but my Endocrinologist was being Cautious, and not to raise it to fast.  I could understand that upon much research.  I would tell anyone to use caution and have A Endocrinologist as part of your team, when raising Vitamin D, anything above 3,000 iu/week.

For some reasons not known yet, it takes me 150,000/ iu week to maintain my vitamin D in the 80s range.   I found 10,000 iu pills made by https://www.puritan.com.   This would only mean 15 more pills A week to take, or two per day, and three on Sunday.

  Much research has to go into this high of dosage, and what not to take, to help put calcium back in my bones , as Osteopenia was found by a bone scan.

"if you have osteopenia, you have lower bone density than normal. ... Bone mineral density (BMD) is the measurement of how much bone mineral is in your bones. ... If you have osteopenia, ask your doctor about how to keep it from worsening so you can prevent osteoporosis."

Why was my body not absorbing Vitamin D, or Testosterone?. Another blog to discuss.

A Heart Dr was also brought on as part of my team. The heart is a muscle that can be attacked by Multiple Sclerosis. More about the heart later, but my heart came back strong.

Thanks for reading
JoeY

Constipation and MS

             The down and ugly of constipation with multiple sclerosis.

I could tell you daily how I am doing, but why re-create a scenario that has been written about? I have tried a lot of different items, and do not exclude natural fruit, like bananas, figs, dates, prunes, bran, psyllium, and more.

Within the second year of multiple sclerosis I was put on Generlac, A prescription medicine, to help chronic constipation.  Viberzi, another drug was tried for a year, for diarrhea.  Perhaps all Multiple Sclerosis problems. Metoclopramide was then used, to help bowels empty, and with how my stomach started to bloat and become distended.

my partner mentioned, what if it was not all MS?

 A upper and lower scope was done by a gastrointestinal professional a few years ago, to  to try to find answers. A few items discovered like a hiatial hernia, and ulcerative Colitis, which is listed with Rare Diseases.

VSL#3 DS  900 billion bacteria, prescription strength, has been used to help UC, and has also been used in trials with MS.  Neurologist Review,  and  Probio Multiple ND (ACTRIMS) 2017  are good places to start reading.

UC Davis, San Francisco was also doing a study with this super strength probiotic.  I was doing a mirror of this study, except I knew I was using the real VSL#3 DS.

My Stomach  has been  bloated, then became distended since the beginning diagnosis it seems, looking at last notes. Just gets worse.
 Bloating and distentention

 A bulge in my belly button was a hernia fixed  in early diagnosis.

Around the same time, Ubiome.com was doing a pilot study of the DNA of what's in your Gut.  That's for another blog of its own.

Constipation and Diarrhea still continue to be ongoing daily.   In a blog written by patientslikeme.com , they write about, and explain constipation and Diarrhea called :  Openness.

 If you never had Hemorrhoids, that's another word to look up, both the inn ward and outward ones.

A  squatty potty, or block of wood to put your feet on, along with  a proper massage of bowels, reading materials, and time also helps.

If other therapies have helped others, I would love to hear about!

Thanks for reading.
JoeY

Alternating Extropia to MS

I know this blog will jump around in slots of Time, so think of it as episodes thru the years, and looking back.

I Went in for eye exam at Costco. just happened to book a good Dr there. He was quite thorough with dilation, and putting in prisms in my near sighted glasses.  and needing saying I needed a second pair to see.  I needed two sets, as the thickness needed and a prism he was adding.

The eye Dr was in end of June 2012.   alternating Exotropia was going on. I was having double vision since December 2010.
He wrote a few items down, to let my GP know, and a specialist may be needed.
Alternating Exotropia and a bunch of other words I would have to look up.

My GP had already ruled out most of the other aspects of me.   This led my him to seek a Neurologist outside the area. He would not tell me what his thoughts were, but years later, I saw it written down... Multiple Sclerosis suspected. I had asked about this possibility, as my disease was not  going as CRPS (Cronical Regional Pain Syndrome), which was a diagnosis given to get Dr's going.

more blood tests July 2 2012

MRI brain was done July 18 2012, at our local hospital. The Reader of the mri, puts in bold print NO SIGN OF MS. --------------------------------------------

I would not know that hospitals have different magnet strengths of MRI machines until much later, when a DR mentions politely that the hospital I went to does not have a strong enough magnet. But more of that in another post.

My GP said local neurologist did not go far enough, as neurologist wrote in his report i was faking  symptoms, in Dr terms.

My GP was smarter,  sent me to one neurologist  out of our area.

This happened quickly. The Neurologist, A old fashioned guy in his 70s, was seen at his outpatient quick fix hospital center. This led to  him looking at my films of MRI done, and a man of little words. Uhm, ouhum, yes, keep these in this order. He then ordered a
spinal tap,  done  Aug 1 2012 at his main office.

This was done by him in his office.  Reading now about spinal taps, I think I had the best neurologist do it in the country. More Blood was drawn, analyzed, and bands were seen in spinal fluid. He mentions treatment to begin. Shows me the three lesions on film, quite prominent, with shadows of old lesions. There is a rule of time, lesions of new and old, along with bands seen in the spinal fluidfluid, and ruling similar diseases out.

Copaxone ordered and delivery made, as a first line Disease Modifying Drug (DMT)
The next was MS treatment Using Botox September 13 2012. This is a different Botox, then used for looking pretty. It's purpose was for Muscle Spasms.

I had already reached the maximum dose of Baclofen, trying to control Spasticity,  more of that in another post.
A Diagnosis of:
cervical degeneration disc disease
Multiple Sclerosis

Optic Disk Pallor and Right lateral gaze nystagmus  was recorded going on by 2013

But much  more on the positive side

Thanks for reading
JoeY

Amazing Race

In the beginning episodes of the Amazing Race 2001, Before cell phones, Before DVDs, they had Video Cassette Recorder Cameras. Bulky, compared by today's standards. The Amazing Race around the World had just started in USA, hosted by Phil kohgen. The Winning team, would win 1 million dollars.

Both my health and My partner Wils health were excellent. Seeing the first two episodes, we decided to apply for Season #3. Our Race started with applying for passports. A Time limit of a three minute video, along with perhaps a twenty nine page interview needed filled out.  https://en.m.wikipedia.org/wiki/The_Amazing_Race

We had to apply for passports.
 Wils birth certificate, was taken from safe, old paper. The County would not take this. He had to have a new finagled one and pay for this, which meant a few hours trip to the state capital records to obtain. Mine, a old plastic card, issued in Alaska, was accepted. A phone call to a last old time employee days before retirement, knew they had issued cards for the few years when I was born.

Then to get all this with pictures, that only could be taken at county, in special paper, had to be sent in.
We took many takes to get a three minute video, On a old recorder that had a VHS tape bulky in, to tell the producer why we should be selected.

Pictures of our campsites, and others submitted to show our adventures, and why only should  choose us.  We were one of 25,000 entries.

In the beginning episodes, there were a Lot of food challenges. Wil told me I would get those, as I had such a great stomach for any type of food.

This would of been for episode number three.  The Top applications would of been flown to Los Angeles, for another interview, needing to have a month to race and travel.  What is not told, is from the hotel, if selected, you would be at Starting line.

Needless to say, we were not selected, were not flown to Los Angeles, but that was the beginning of many Amazing Races we would encounter.

 Not knowing in a few years, one Amazing Race would affect my health called Multiple Sclerosis, stopping everything in its track.

 Now we call it a Amazing Race for trips, or outings.

Thanks for reading
JoeY

Chostochrondritis, Heart Dr, Neurologist team

Costochondritis was a new word for me.  My upper torso on the front right side began to have non stop muscle spasms for fifteen days.  Since my Doctors were not around, I asked Bruce, my partners Dad.  He has been bed-ridden with RA for thirty some years. He was quite knowledgeable, as of having to go thru the pain of RA, and also knew computers inside and out, like he knew his body.

Some Ibuprofen was tried, which took the zaps, and calmed the spasms happening down. But when you have a muscle thumping, in leaves the area quite sore.  Upon seeing my GP, he confirmed Chostochrondritis, and 600-800 mg of ibuprofen was needed to stop this. 

 My other Nsaid,  Diclofenac, was being used for inflammation at other areas, and has no effect for Costochrondritis.  I had to ensure I used these Nsaids at different times.-------------------------------------------- 



I joined iconquerms. https://iconquerms.org.   and sent in a saliva sample for DNA testing
iConquerMS™ empowers all people living with MS to participate in research. Unlike other data-gathering programs, iConquerMS™ is governed and driven by people living with MS. 

A new GP, looks at me across the room, when I am describing my pain. He told me a Torn Rotator Cuff, and nothing they could do, and left. I was not thrilled with him, but figure he would not last long at the clinic, as they had gone thru many Doctors.

Another MS specialist from UC Davis became involved. A Neurologist, who would do thorough test on me every six months, or sooner if needed. I am one of many patients with MS she studies and lectures on. She also loved my notebook, and that I had all my blood tests, so they could be scanned in.  I would keep my Primary Neurologist, as such. She did not do Botox, and would be more of researcher in me.


  

A Dr from Sacramento Heart became involved as part of my team early on.   The Heart is a big muscle. And Yes,  MS can effect this from the beginning.  A EKG, and  echo was done as my pulse has always been high.  The Dr said, "it was like I was running a Marathon, even though my body was at rest. " This being caused by MS.  He did not want to slow me down, but ratherrather keep me able to do whatever I could.  A Mitro valve prolapse was seen, but not leaking.  This is part of what other Dr's heard, but needed a expert to see.
My heart was strong, and has not been effected by MS.  A yearly, or six month visit would be ongoing for years to come.

Thanks for reading
JoeY