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