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

Treatment

The treatment started with Copaxone injected daily in September 2012.

I had never needed pills or injections before. This is one of the Disease Modification therapies (DMT).  Copaxone,  (Glatiramer acetate) was chosen to try to slow my MS down.

Looking around the web, I found a young guy, named Matt Allen.  He has a blog I follow here :   http://mattsmultiplesclerosis.com

Matt also had a video, click here: Video of how to inject the Copaxone, as  Shared solutions, their company, did not have any video.  They were to send a nurse to my home to show me how to do this, but his video made me feel at ease, and led me to his blog.

Matt's  web site is quite detailed, and has explained his adventure with MS, and explains about MS.  His blog is always changing, and A great blog to follow since day one,

  Injections were easy for me, both manually and by their auto injector. The nurse was quite helpful, allowing me and my partner to learn injections, and sites, techniques, and practice, until ready.  I was skinny enough, that I did not need to change settings on the injector depth.   I am somewhere on the 2,880 th injection of copaxone daily as I write.  More on Copaxone in another blog.

But need to talk of Spasticity issues I was Having.


"Spasticity is a condition in which certain muscles are continuously contracted. This contraction causes stiffness or tightness of the muscles and can interfere with normal movement, speech and gait. Spasticity is usually caused by damage to the portion of the brain or spinal cord that controls voluntary movement. "

This was already a part of me since 2010. I quickly reached the Maximum amount of Baclofen, which is used to treat Spasticity.

By November 2012, my next treatment was with Botox.
 "Botulinum Toxin A"  injections went into into both calf muscles, neck and forehead by  My Neurologist.  He could feel which muscles were problem ones.

This was due to issues of cramping muscles caused by misfiring electrodes from my brain, going haywire, being caused by Multiple Sclerosis.  This had been going on for two years now, with stiffness, and foot lagging.  When I walked, I had to tell my foot to move forward.

Botox is only covered for every 90 days. After day 62-64 they botox wore off.  My Neurologist was trying to slow the progression down.  More in another blog.

He followed up with  VER test of eyes, and lower extremities. I did not do well on either test, but he needed a starting point to see progression, which was better than MRI, as it checked the speed of nerves from brain to toes in both sides.

Thanks for reading
JoeY

The Beginning

I was healthy, never needing to see a doctor. Never would I have guessed or known anything about ms changing my life overnight, or what MS ever was.   I was active, going out on camps into the wilderness areas with my partner. A drive to the ocean and camping the coast in remote areas was so much fun with Wil,  Going to Hot August Nights, camping, and going thru every isle of three separate Super walmart's to stock up on items not found in the small town we live in was part of the fun, along with walking the isles of the antiques and flea market vendor's, then going thru ever isles of cars displayed at every hotel.

Searching for the best spot to eat, we always made that  into a adventure. Geo caching came later, with even more spots found in remote locations on our travel paths, giving us different views of areas, and camping spots.  Backpacking into remote wilderness lakes and areas was relaxing.

MS hit me hard in 2010, and keeps progressing.

It was late December, I took a Fall while walking to the customer service booth, to get cigarettes for A customer.  A puddle of water was being hidden by another employee. He Watched me fall, but corp policy is not to say anything.. I fell hard. But needing a job, went back to my station as a cashier, scanning products as fast as possible.
A manager, took me to the side to file company papers, as a incident report, as he did not want to loose bonus for no accidents that quarter, since it was December 18th.

Within three months, I was holding onto the counter for support, my vision going double, gait was off, my wrist hurt, and then my hands froze up, dropping groceries.

  I never did see the video of my fall, that triggered MS, that they said  laid dormant in me.  I will spare the details of a broken workers comp system USA has, unions that do not work,  and lawyers are terrible, that drag on, without medical care.

The local bandage hospital we have in town initially splint up both wrist, gave me some strong pain killers, but noticed my leg dragging before leaving.  Referred me to see a neurologist, as they had none, and I must see the company Dr.

Dr Quack, I call him yelled terribly at his patients. You had to see a company Dr, not one you chose. The best thing he told me, is "You have something going on, but they (the company) will not let me run any test to prove one way or the other"

My hands were clammy, doughy to the touch. Right side pain went to left side and crossed back. He told me, impossible, as the right brain doesn't talk with left brain. But something was not right.

Clonidine, a inexpensive blood pressure medicine was used off label. This unclenched my hands. He had me go off, titrated up and down, with results of hands clenching up, and being doughy, Along with my blood pressure.
But that worked.  I did not know it is a old drug used for MS off label.  a inexpensive drugs used for pain and inflammation.

A local Neurologist was seen. Another quack, as said I was fine, faking symptoms.  Even measuring electrical flow in my wrist, to say no issue, with warming or cooling wrist to obtain his results, and me jumping with pain.  Not sure how you can fake symptoms physically seen, and what was going on.  Just knew body pain, wrist plain, and not being right.

A local GP was finally seen. Took six months to get the insurance company to approve a MRI.  In the meantime that year I was sent to a pain management Dr.

opioid, up to Morphine was used. A Initial diagnosed CRPS, "Chronic Regional Pain Syndrome", as they needed a diagnosis for pain med.  The local pharmacists asked me if I was picking up for someone on their deathbed, as the amount of morphine given.

 The local hospital used again.  MRI came back, read by the only person who reads every one's. No MS in big bold print. The Local country Dr  said they did not go far enough. Sent me to a Neurologist out of our little town.

   This Neurologist,  looked at the film, yes before CDs, each film picture would be looked at.  Four were told to keep in order, and he scheduled blood test and a spinal tap in his office immediately.

These came back with ontological bands, the rest ruling everything out.--------------------------------------------

Test of brainwaves were done with electrodes everywhere on my scalp.  Another electrical flow in both wrist. A starting point test from head to toe of how fast nerve electrical systems were moving.  I make this sound fast, but August 2012 I was diagnosed with MS, taking the first two years.  This is Fast for Diagnosing I would find out later.

Treatment started with Copaxone.
The Pain Dr weaned me off opioid and Morphine.  Cymbalta and Lyrica   were used in combination to treat Pain in Multiple Sclerosis.  The electrical zaps, experiencing, Gabapentin and Nortriptyline.
 More about that in another blog though.

Guess this is a good starting point for my blog in hope to help others, the research it takes, and how this Ever changing MS effects me.  I am not a Doctor, just always seeking information.

Ten years later, it still progresses.

Thanks for reading.--------------------------------------------
JoeY

Hands and eyes

Guess I should mention ongoing and new symptoms before getting ahead of myself.  Double Vision, and my Gait were off since December 2010. My hands stopped working, dropping items in front of people.
the local hospital put their last two splints on my wrist. Sent me home driving this way.

At the first Doctors appointment, they both Froze up, me being unable to grasp, or move them.  Clonidine, a old drug was used, that freed the hands, which were described as cold, clammy, doughy. The wrist guards were used for months to come, as entrapped nerves in both the wrist was suspected.  The cause, scanning groceries as fast as possible.  My new Neurologist confirmed nerve entrapment, both wrist.They still have problems to this date, but surgery, hear horror stories.

The Double Vision has not gone away since day one.  Words such as alternating exotropia, Optic Disk Pallor, and Right lateral gaze were used. Prisms were installed in glasses, one for reading, and the other for distance, as the strength of prism, one pair would no longer be normal.

By this time I had added a ophthalmologist, and a optometrist to my team to help my eyesight. The ophthalmologist, at least told me, " no matter what time of day, your eyes would always need a new pair of glasses". This was due, not by my eyes, but how my MS was effecting the muscles, and how my eyes were interpreting these.  

A new Optometrist was added last year. He spent two hours on my eyes. Pictures, thickness blind spots, and a problem in 2017 he saw. My Neurologist was quite interested in the  retna thickness, with this changing six months later.

My left eye, when shining a light into it had a lengthy delay, for pupil dilation.  Another problem, was the nerves looked like "cotton balls" when he displayed the eyes.  new glasses again, more prisms.

This led to UC Davis Neurology. They immediately put me On five days of intravenous Steroids, done daily.  A follow up with my Ophthalmologist was done, and neurology.

Thanks for reading
JoeY

Swallowing, steroids, acthar

A Swallowing test was also done in 2014.  You drink and eat  foods that have radiation isotopes added to them, while standing in front of a body scanner, somewhat like a huge xray machine.  This was done in live motion, as the Dr's watched how different consistency foods reach the stomach. I think a dozen people watched, including a speech therapist.  It was like I was the first person at our small hospital to have this done.

  I was diagnosed with   Esophageal Motility Disorder.
   they all watched each bite, and timed its progression thru chewing, to swallowing, and going down the throat until it reached the stomach, which took too long, and could see the consistency of liquid, to Apple sauce, to bread, some chewy stuff. It all tasted awful.

 Their  solution was to eat smaller bites, do not use straws. Yes, another MS problem. To add thicker solution to drinks.  No follow up was done, so I had to do my own research to figure this out. Yes a Symptom of Multiple Sclerosis, as these are all muscles controlled By the brain, which mylen was his firing

By April I had my first dose of 

METHYLPREDNISOLONE, trying to slow down the MS progression I was walking with a cane, but no speed.  This is a steroid. Given either intravenous, or by pill.  I would have five days intravenously a few years later.


In June, a $35,000 injection for five days of ACTHAR was used, trying to slow down the ever-changing progression of MS. This  is a hormone.

                                 "H.P. Acthar Gel is, a drug made from pigs' pituitary glands"

Other Dr's did not know that Acthar, being a hormone,  would cause my testosterone to reach extreme limits. I would not realize this for months, and a lot of research, as I kept a graph of injection amounts and my body was doing,  not increasing increasing within the ranges.  This still did not kick start my body.  Looking back, I would prefer Acthar   over the steroid,  METHYLPREDNISOLONE As the ease of use, and better effects then steroids.

Thanks for reading
JoeY

2014 new symptoms?

This again was Ever Changing MS.  I was diagnosed with Testicular Hypofunctionon going on, and was still doing testosterone therapy with injections every other week. This was being used to keep my muscle mass, not that I had much of any,  but they wanted to keep a quality going.  You can read more about this at the Mayo Clinic

The amount injected being changed as my levels bounced around. A MS symptom. I had a Great GP, and in February, I showed him my belly button. It went from a innie to a outtie.  Not sure if this is a MS symptom, or just something else going on as my body was changing.

Umbilical Hernia-Pharyngitis, Acute was a new diagnosis, with a repair done to fix this made immediately. Would be interesting if how many others have had their body change quickly.

I just knew afterward, it took my body a while to heal after surgery. And a new type of pain as The skin healed around a mesh The surgeon put in.

Then the  pharmacist changed my copaxone to the newest 40mg three times per week, without consulting my neurologist.  A pharmacist playing Doctor.  This would happen many more times over the years. This was the Newest DMT, Disease Modifying Therapy out there. I tried this for a month, with huge welts.

My Neurologist changed me back to 20mg daily, as more copaxone is in your body, and  on a daily basis to slow progression down.  A more stable approach, rather than going every three days, you have the same 20 mg in your body daily.

  Every three months  Botox was still injected into both my calves, neck muscles for spasticity. This was followed up three weeks later with questions and hopefully answers. The Neurologist liked my notebook filled with research questions I would have for him.--------------------------------------------

Evoked Potentials were ongoing. A Great Article of what these are, is written by a fellow Blogger, Devin Garlit.  You can read it here:   Devin Garlit on MultipleSclerosis.net

  Researching every site I could find that had Merritt to them. Their  is a lot of mis-information on the internet, so facts of where articles came from, leading me to ask questions to university's around the world, and start reading many more blogs, and learning more then I thought I would, or could. Not making me a Dr, or claiming I have information to diagnose anybody else, just learning what my body was going thru with all the medicine that kept being added.

Thanks for reading
JoeY

2013 a year reviewed

2013 provides for a interesting year. Many New Doctors became involved. Some excellent, they know who they are, and some duds.  Optic Disk Pallor and Right lateral gaze nystagmus was noted going on, Dr, agreeing with other Doctors. 

I was given a large Dose of Vitamin B12 injected. Wished that would help, but it did not.

Many EEG, EKG, EMG, and Nerve test done to check how fast nerves were traveling
Electroencephalography
Electrocardiography
Electromyography
Nerve_conduction_velocity
Nerve_conduction_study

This also showed my Neurologist how quickly my Multiple Sclerosis was changing.

A switch from Cymbalta to a generic was done by a doctor. The generic was a sub of a generic, and did not work the same way . After much research of new or changed symptoms, and what was causing, a different brand of generic was finally given. Not the same as cymbalta, but a little closer. Generics only have to have 70% of the drug, and changed, so they are not the same. This medicine, along with Lyrica was is used to control pain with Multiple Sclerosis.

More meds were added in 2013.  Testosterone can not be tested, unless you have A disease showing you have low Testosterone, if that makes clarity. A Test was done, showing I was low. Testosterone Therapy began quickly, with a three inch needle injected into my butt muscle. My partner was trained how to do this.   The clinical name, Testicular Hypofunctionon was going on. 
Much more about this over  many years, and injections needed will be in another blog

A heart Dr became involved, as the heart is a muscle, and could be attacked by miss firing of nerves damaged by Multiple Sclerosis.  Mitral valve prolapes, was discovered in a echo graph, but not leaking.  A Strong Heart, and described as "the heart is beating, like I am always running a marathon, even when the body is  sitting or laying down"
I found a app for my tablet tablet to be used, called my heart.  I would use a blood pressure cuff, and record readings  for years to come.  These have came in use by many Doctors since, and the app is always improving for the better over the years.
Szymon Klimaszewski  is the developer.

blood Pressure application for Android devices

https://play.google.com/store/apps/details?id=com.szyk.myheart

https://youtu.be/kPRWLwmREh8

Thank you for visiting

JoeY