IRON. IRON H63D gene Hereditary Hemochromatosis

      Its been a while, but refresher course in iron.   A double H63D gene was found  in 2018. A rare for it to overload iron over load, but did. 17 trips to phlebotomist, or vein puncture, to take blood from me. see prior posts.

Do labs every three months. I was left iron deficient for three years. I found if I stopped my turmeric curcumin regime  a day, and ate beef liver with onions, and restarted my regime, it brought my iron back into balance in 2022. A trial and experiment.

 As there had to be a way to close the iron valve.

Since I have Primary Progressive Multiple Sclerosis, some items get blamed, where there may be a different diagnosis. So thus bouncing between Drs, who all have their own theory.  Last October 2021, my hemoglobin was high again. To many red blood cells, or to large.  Thus prior you tube videos to explain. But No Iron to dispose of with a phlebotomy. 2022 was year I got iron increased, by trial. And testing.  A three year low, or anemia that played a part.

Labs again in a few months, to check, and double check endocrine system. A protocol, a Specialist put me on last year  in 2021 helps tremedously but that's for another blog.

I receive Botox every three months. Injected deep into calves, inside and out, thigh muscles, and into neck muscles on both sides, and into right shoulder. The right arm was added last time.  Another blog to talk about, but helps a great deal.

But I did not want to loose these links that help understand... Just more info to listen to.

        

Iron Deficiency Without Anemia – Common, Important, Neglected

        Transferrin   Saturation

Another great site I found on iron, and related diseases

http://checkiron.com

                                                       Iron Physiology

Gastrointestinal | Liver Metabolism, Protein Synthesis & Storage

   

Approach to Anemia

Join my blog, so I know my readers!

JoeY

Neurologist and specialized Drs

 

Every Dr has their Speciality that I see for multiple conditions. The year 2022, made it this far with Primary progressive Multiple Sclerosis.  Awaiting new medicine to come out, as my body makes everything off the table, except Copaxone and twenty plus medicines.

So I stick to what is working thru my lengthy list of medicines, and what they are used for. Vitamin D3 in high doses, followed by endocrinologist every three months. A GI Dr, A Kidney Dr, A Heart Dr, a blood Dr, a endocrinologist, Eye drs, The list goes on.

A B12 test was ordered to check my levels, as they were low a few years ago. This you pee out any extra.  I see my blood Dr in a few weeks, as B12 can also make more red blood cells. I wonder about my other B vitamins. I do not need more red blood cells, as that makes more hemoglobin, which in turn bounces me back to another Dr.

I was on high dosage of Biotin a few years back, vitamin B7.  I measured pure powder on a scale, following study, but on real biotin, followed by endocrinologist.  The vitamin affects many lab test, and I had to stop for my endocrinologist. The high dose biotin trial, never panned out with good results anyways.

Currently my labs look good, but adding in certain vitamins could cause problems.  I have hereditary Hemochromatosis, with the Rare H63D genes, both gave me iron overload in 2018/9.  I did 17 phlebotomy or veinpuncture to resolve the iron, but that left me iron deficiency for three years. That has its own set of problems, of Anemia, and items shown how blood is made from the bones.  I will have to go into detail in another blog.

Anyways, being unique in getting all the side effects of medicines, especially generic, My team works hard to ensure I stay on name brand.

A Testosterone test came back with erroneous readings. My Dr thought the batch that my pharmacy sent was bad. She made three attempts at over a hour each to get a replacement medication.  They decided to play Dr, and Not Send any new unit, so I could retest. Every day she sent a new prescription in, talking to pharmaceutical department, it put them shipping out the next 90 day order by a few days, of when my regular order was due. Three long emails were sent from me also about the problem, that they answered to call them again.  This comes to who is playing Dr.  

My three month labs will come due, right before my next shipment comes. A waste of resources, from the drs, the labs, The largest mail order pharmacy. They asked if I wanted to file a complaint. Hmm.. "Like bitting the tail of the Dragon that feeds you"

Photo credit wixmp.com

Back to Experts I utilize at UC Davis, Sacramento. Many items have been added to my MS over the last ten years.  I lost count, at over twenty experts looking into certain areas that has a cause and effect.  I do much research giving experts a a different viewpoint sometimes on new studies or of which came first, as their is no cure.

This blog, to help keep scientist and followers updated to a point.

A lot has gone on this last year, I may write about in another blog, but being bounced around like a ping ball between Drs right now. Just not much research has been found because of my unique mess, of different specialists needed. Was offered two new ones, but have declined until I get my other specialists updated and involved.  

Everything takes time.

Joey

State of California vs Joe lawsuit

Most of you know I live in California. How can I afford items is still a mystery.

We live quite Rural at 3,000 ft above Volcano CA pop 101. Beautiful in nature with a small home, and no close neighbors. 

I went thru so many state and federal programs before my diagnosis was found.

Years without any income coming in.  I was glad to have a house with my partner to stay in, and not be on the streets. I have two moms. My partners Mom, who takes excellent care of me, and my mom, who lives in Alaska, who also is quite supportive. Bruce was my partners dad, quite knowledgeable. Miss him, and our conversations. He had been bedridden for 30+ years.  My partner is quite supportive and helpful with me.

I was diagnosed in 2012 with Primary Progressive Multiple Sclerosis.

Many rides were needed to go to Doctors outside our county. This includes The University of California Davis in Sacramento, CA. This can be up to a two hour ride one way.

Our county is smal, and does not attract to many good doctors, I hope you all do your own investigating, and can find expert cae, even if its in the next county with knowledgeable Doctors.  My local GP knew something was going on, and knew the only neurologist had not gone far enough. He sent me to a Neurologist outside or County for care.

I am on a dual medi-medi program from the Federal Government, State Government, and Social security.

The State of California made a ruling years ago, that makes sure you get to and from your Dr visits, by providing rides. This applies to anyone on Medicaid, or Medi-Cal or certain other programs. The state maintains a huge fleet contracted out. "All you do is have to call them" ...not so easy.

"The State of California is Required to provide me with transportation to and from  all of my doctors. This is something not happening...

John Tan of  Legal Services of Northern CA has taken this to court twice.
42 C.F.R. 431.53 requires Medicaid plans to specify that "Medicaid agency will ensure necessary transportation for participants to and from providers" transportation includes rides but also "expenses for transportation and other related expenses...". 42.CFR 440.170(A)(1) Fee For Services... Cal. Welf. And instead code 14132(ad)(2)(B)
A State hearing before Judge Hammond was heard in Sacramento, CA March 26, 2019, and a re hearing was heard July 16, 2019. Both denied.

Legal services of Northern CA has appealed this case March 18, 2020. Due to the world Epidemic, the case is dragging on.  Natalie DaSilvia  is in charge.  the year is 2022.  when she left,Ted Mumford took over tmumford@lsnc.net
 

He is the leader of this ongoing court case in 2022

This state mandate took nine years to find, going thru counties, government, agencies, other organizations, and many counties. to find. organisations who gives rides, but they would not for me.  

The year found, 2018 was that in the next small town, Ione, CA, was Hector from foothills medical transportation. Nobody in any State agency knew of him, or that he gave rides. There are five NEMT (Non Emergency Medical Transportation) in the state. Contacting DHCS,(Department of Health Care Services) took them nine years to find Hector for me.

 This came from a Sacramento Government Agency, who knew of the problem. They had been contacted many times before, with no response.

To this Date, 40,000 people in Amador County need to be on a ppo plan, as no HMO is in the area, unless you forge that you live in ione, ca. That gets you to a hmo, keiser in the valley, another county away. 2023 you are required to join a HMO.

If on a HMO, there is not a problem with rides, they say. . Many vehicles, and companies can give.  the State of California has a huge fleet of vehicle's that they use, pay the drivers, wait time, so to take you home is what is supposed to happen.  Our county will not tell you rides are availiable.

Hector can only drive on certain days, as I am the only one in Amador county that needs rides?...   

The lawsuit needs to charge each county not being in compliance and letting their clients know of the service, that they can get to And from doctors. Perhaps sue counties also for non compliance

Currently, to try and obtain a ride, I must submit a request to 
The Department of Health care services.  My Dr, What for, address, ect.  I also send this to my county workers, who should know about the program, but fail to let clients know. At one point, the county said travel reimbursement, but I have seen zero. The County personnel also wanted Hippa Privacy items, not entitled to, to be sent.

I keep this list, published here also, so I will not forget who I send requests for rides to.

They usually are ignored, not responded from, or go  un-noticed.

tmumford@lsnc.net

Ted Mumford, lsnc.net

Hector Flores

foothillsmedicaltransportation@gmail.com

TMitchell@amadorgov.org

Jrodriguez@amadorgov.org

TDalporto@amadorgov.org

Matthew.Kizzie@dhcs.ca.gov ended employment 5/20/22

Jonathan.Ring@dhcs.ca.gov

Tiffany.Saelee@dhcs.ca.gov

Tere Gonzalez  Tere.Gonzalez@dhcs.ca.gov

Jim.Elliott@dhcs.ca.gov

The State of California VS Joe leighkendall was heard by a Judge, earlier this year, as required for transportation. The State has asked for two delays, which were granted. They used this to abuse their powers by auditing Hector, his books, and vehicles he uses.

They did not audit anybody else.

To ensure his fleet was spick and span, records up to date.

 I asked DHCS for reimbursement for my partner,  Our 29 year old vehicles have taken a beating. Wil can not drive the distance. Records from doctors from 2012 of rides needed were given to all for reimbursement. All current ones are emailed to the above. . I have exhausted all means of transportation.

 I asked for transportation to out of town doctors. gas reimbursement, registration fees, insurance fees, repair cost and operating costs. A repair of the system.

I asked them to comply with their rules and supply me with a driver to get me to and from Doctors out of Amador County , as required.  

I asked that other people in my situation, have access who qualify, with reimbursement for anything else related.

I asked them to Fix their system, so thousands of others that qualify, or are enrolled and qualify, can get rides, uber, lyft, (we are to small to have that luxery of paid cars to take you places) so need a driver like Hector. He has vehicles, and drives many people on hmo plans.  reimbursement, and everything that the DHCS offers.  Rides to and from the Dr, medical trips, supplies. He has vehicles ready to hire more drivers, but I am the only one that has researched, taking time being pro active.

Hector can only drive me on certain days. My Doctors do not allow me to choose dates. As they only see patients on certain days. He takes many patients to dialysis, thus he has a filled schedule.

The year, 2018, not looking for another diagnosis, my Endocrinologist sent me to the Cancer Doctor at UC Davis, as  blood readings kept being off.   The cancer Dr. did some gene testing, ruling some out, before he found the HFE Gene, a Rare H63d Gene causing Iron Overload in me. Quite Rare, and I  have only found a few other persons in a ten year span that have iron overloaded.


This caused 17 phlebotomy to uc davis weekly, along with trips to my other Doctors. The only treatment is barberic, known as blood letting or a Phlebotomy weekly, to drain blood from me, trying to get the iron down.  My blood comes out as thick as pancake batter.

No rides given, even though the State DHCS knew about the real need, as exhausted all other means.

2019

John Tan of  Legal Services of Northern CA has taken this to court twice.

The State of California VS Joe leighkendall was heard by a Judge, earlier this year, as required for transportation. The State has asked for two delays, which were granted. They used this to abuse their powers by auditing Hector, his books, and vehicles he uses.

 I asked for reimbursement for Wil, who had driven, 

A  hearing by a different Judge was asked for On terms CA was not following their own rules.  The first judge took fifteen pages to state denial. The second judge did not override any items.

CA IS NOT FOLLOWING ITS OWN RULES, as I am Not on a Managed care plan, and Can not be. Must be on a PPO plan, because of all the specialist, and No HMO plan covers our county.

On Sunday August 11 On page 6a of the Sacramento Bee, Cathhie  Anderson wrote a excellent article that blast medi-cal for failing 18 counties, and she doesn't know people on Nemt, have been forgotten, and No rides given, or re reimbursed for. .This  Took DHCS  Nine years, and then another three months to find me a driver 15 miles from home, taking the largest toll on trying to keep a vehicle running for multiple specialists weekly, and a Toll on Wil trying to maneuver Sacramento.

The State says they do not have a reimbursement plan in place, but they do, just a code Needs added to their existing transportation for those of us forgotten patients.   That would pay Nemt (non emergency medical transportation) drivers , the same premiums that the state's drivers are paid ( they pay a lower rate currently) , and wait time, to go hundreds of miles, reimbursement for mileage Wil drove, plus maintenance, and, would love new vehicle that is safe for local Doctors.

UPDATE OCTOBER 2020
this case is being heard by the California Attorney General.  They just want this to go away...

This is being handled by legal services of northern California for me.

I would need a Second Class Action Attorney to represent thousand not receiving this benefit.

I did Not accept their offer, as Rides to appointments are still needed to Sacramento. Rides Wil can not drive.

Local rides, I asked for the excess repair needing done, including a timing belt, tires,and engine repair on old vehicles. A Driver the state has, like Hector, and wages paid in accordance.

I would like this to be not just me, but open the door for others that can not receive rides to their Drs, as I am not on a HMO plan, that guarantees rides, reimbursement for lyft, uber, taxis, and any form of ride, regardless.  This is Stated in CA Law.

Know I am remote, but many people are in same predicament, in the entire state of California in small rural areas, or small counties forgotten.

For all hose that do not know, DHCS sub contracts out to a huge driver van service used to move people to Drs and  back home. If not, the people can hire lyft, taxis, for reimbursement. That is not a option for us in our small county, thus requested out of town rides provided by state.

​​​Transportation Services

Medi-Cal offers transportation to and from appointments for services covered by Medi-Cal. This includes transportation to medical, dental, mental health, or substance use disorder appointments, and to pick up prescriptions and medical supplies.

 

There are two types of transportation for appointments. Nonemergency medical transportation (NEMT) is transportation by ambulance, wheelchair van, or litter van for those who cannot use public or private transportation. Nonmedical transportation (NMT) is transportation by private or public vehicle for people who do not have another way to get to their appointment.

 

When requesting transportation, be sure to contact the transportation provider as soon as you can before an appointment. If you have many appointments, you can also request transportation to cover those appointments.

https://www.dhcs.ca.gov/services/medi-cal/Pages/Transportation.aspx

Hector from  foothillsmedicaltransportation.com was contracted to drive us, but missed many rides.  He has my medical Dr list for next six months, along with everyone on the email list above. 

so I hope he can still help on some rides.. 

Their is expensive rides in hundreds of dollars, people would charge, just to be denied they are not on DHCS registry, and I would not be reimbursed that I was asked to take.

We live at 3,000 ft elevation that gets Snow in Amador County.

The State of California is Required to provide me with transportation to all of my doctors. This is something not happening. 

 . I asked for reimbursement for Wil.
 I asked for transportation to out of town doctors.
I asked for the wait time, and to be able for second appointment the same day paid for, as the state caps the wait time for Hector at a minimum wage when he can drive.

Some appointments are more than the hour allotted, being a few hours, or waits between two Drs on the same day

In the meantime, Hector has stepped in to help out of town driving, per agreement with the State. But not many fit his schedule.

 I have exhausted all possibilities of other rides.

Hopefully this will find its hands into the proper State, County, Federal people to see that their program failed me, along with thousands of others, that do not know, or are not told about this. 

 Even Hector could hire another Driver if others in Amador County knew of the Rides to and From Drs even outside of our small county to obtain expert Doctors needed.

Contact me everchangingms@gmail.com, or my legal team, tmumford@lsnc.net for answers.

Thanks for reading my rant

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Joe

This Last year, 2022, Hector has been unable to make any rides., except two on a friday/Saturday.

DHCS Requires in 2023 Everyone be on a HMO plan. Drs in our county do not accept this plan. You can call the list provided, and will not get a Dr, or Hospital. 

DHCS required me to ask to a Exemption from UC davis. One filed, but forms kept coming to join a HMO. A second Exemption of 75 pages was filed by my Dr. Then DHCS accepted this, and then stated I did not need, as was Exempt from joining a HMO.

The latest hearing, DHCS is being required to turn over a list of everyone driven in CA, and how they pay drivers, reimbursement. Still dragging on.

On a note Kiser was given the HMO contract in 2024 for Amador County. ( no bidding?) Or Drivers to take care of need Now?

Sleep and MS, or Sleep awake Cycle, sleep deprivation

 A Topic, I have not blogged much on, is the sleep cycle. There is a known item called Sleep deprivation also.

I have experienced this since before being diagnosed with Multiple Sclerosis. But this is part of Multiple Sclerosis, and a bunch of other disorders.

This According to Wikipedia, 

"Sleep is a naturally recurring state of mind and body, characterized by altered consciousness, relatively inhibited sensory activity, reduced muscle activity and inhibition of nearly all voluntary muscles during rapid eye movement (REM) sleep,^[1] and reduced interactions with surroundings.^[2] It is distinguished from wakefulness by a decreased ability to react to stimuli, but more reactive than a coma or disorders of consciousness, with sleep displaying different, active brain patterns.

Sleep is associated with a state of muscle relaxation and reduced perception of environmental stimuli.

Sleep occurs in repeating periods, in which the body alternates between two distinct modes: REM sleep and non-REM sleep. Although REM stands for "rapid eye movement", this mode of sleep has many other aspects, including virtual paralysis of the body. A well-known feature of sleep is the dream, an experience typically recounted in narrative form, which resembles waking life while in progress, but which usually can later be distinguished as fantasy. During sleep, most of the body's systems are in an anabolic state, helping to restore the immune, nervous, skeletal, and muscular systems;^[3] these are vital processes that maintain mood, memory, and cognitive function, and play a large role in the function of the endocrine and immune systems.^[4] The internal circadian clock promotes sleep daily at night. The diverse purposes and mechanisms of sleep are the subject of substantial ongoing research.^[5] Sleep is a highly conserved behavior across animal evolution.^[6]"

^{I can only tell you of my experience of sleep with being diagnosed with multiple sclerosis.  I am not a Doctor, but rely on them with many questions.}

^{Most over the counter items have been tried. Check with your Doctor, before doing this, as some may interact with medicines.}

^{Many multiple sclerosis medicines will can make you sleepy.  But being able to sleep at the right time is a necessary evil that can transform into sleep deprivation.}

I even tried items to help you sleep. Many are availiable by Google search, or youtube.com  binerial  beats at different frequencies was interesting. The sleep talk, to make you feel sleepy, or the pitter patter of rain drops, to the ocean, or a campfire sometimes helps.  Making sure your room is for sleep.

"Sleep timing depends greatly on hormonal signals from the circadian clock, or Process C, a complex neurochemical system which uses signals from an organism's environment to recreate an internal day–night rhythm. Process C counteracts the homeostatic drive for sleep during the day (in diurnal animals) and augments it at night.^[27][23] The suprachiasmatic nucleus (SCN), a brain area directly above the optic chiasm, is presently considered the most important nexus for this process; however, secondary clock systems have been found throughout the body."

My circadian clock was real messed up.

But when all these fail, your Doctor may prescribe medicines. Drug companies may have you do what they call "Step Therapy".  This is usually a process to make you fail, using inferior medications, perhaps a copy of the real medicine, or combinations.

After using a dozen, perhaps more, that included lunesta, and many other  generic sleep meds. at least thirteen other companies make this. All they need is 75% of the active ingredient for a generic medication. I was switched to many sub standard companies, before I requested name brand Ambie, then went to Ambien ER in 2013.

This has happened with other meds that went to generic versions.  Some had detrimental effects on me, that I need the name brand.

Recently, the worlds largest pharmaceutical company bought out contracts from other boxed stores, making them the only player for the consumer to buy from. They Stopped carrying Ambien, with a phone call from their customer service Center, asking me, what I wanted to switch to. I asked if she was a dr, and she said no. I told her I was not a Dr either, so she would have to contact my Dr.

The largest company, Express Scripts, was just bought out by Cigna.

Then it started all over, of "Step Therapy Medications". Three were mentioned. I had already tried. Meds to treat my Multiple Sclerosis were stronger than the Three, per ingredients, and some would interfere with my regimen of meds. I quoted some legal items of Step Therapy to my Dr. For help of obtaining something better.

I gave her two new sleep medicines, and a third coming out, that might replace, or be as strong as Ambien, and the research sites of how they work.

DAYVIGO was chosen, and needed prior authorization, medical exemptions, which were quickly denied.  More paperwork for all the above.  This is where a insurance becomes a Dr without a license.  A review committee, and finally a approval for my Doctor.

5 mg was not strong enough a week later, so my Dr requested 10 mg.

This works differently than ambien. But will have to let you know. I keep a sleep tracker on my watch, a inspire. It gives me scores of sleep, deep, light, Rem, and much more information I  can show my Doctor. Example below.

Much more information is availiable. Many watches and apps were tried, before this was purchased, which show sleep. 

Quviviq-new-sleeping-pill is the newest sleep aid being tried, June 2022. Clicking on this will give you more info than I can, and I will have to do a update on each of these pills.

DAYVIGO gave me vivid dreams, but the maximum dose still did not get me the Quality of sleep I need.

I have been to three sleep studies, two overnight at UC Davis. Many electrodes placed on your head and body. its like being cloned, as they measure all these elements.  I do not have sleep apnea, a condition of snoring. A Cpap machine helps many.

I think I am a test subject, due to my primary progressive Multiple Sclerosis, and hereditary Hemochromatosis caused by two rare DNA H63D genes, that caused Iron Overload.

^{my regimen consist of over twenty Nine medications, counted out for daily use. Each designed for the multitude of MS symptoms, and therapies that have been added on... including Botox  into my calves, thighs, neck and shoulder muscles. Many of the meds make me sleepy, so to combat that Prohibit is used during the day, to give me a few hours for the quality of life.}

^{Thanks for reading.}

^{Email me with questions anytime.}

^JoeY

Blood Pressure monitoring with MS.

 This is of outermost importance with people who have MS or any type of Auto immune or are immune compromised. Your Dr, say GP measures your blood pressure. They only get a snapshot of the moment. Say you were rushed, were angry, or something happened to raise your pressure, or on the opposite side, have a low blood pressure that day.

With a quality blood pressure cuff, you can check calibration accuracy at Drs, you can input readings for all your Drs and specialist to see. You can add daily readings or many per day if needed, or just weekly.

This allows Drs to alk be on sane page of where your blood pressure is at, when not at Doctors.

It has some great features I use, including Drs Name, or facility, or just my notes, like just walked dogs, exercised, or waking up from nap.

He has added features of O2 readings, searching dates, mornings, afternoons, by Drs, and a whole bunch of graphs you can look at and download for your Doctors.

My Cardiologist loves this, seeing how I do in between the times he sees me. Other Experts I see ( think 21 now) have access to emails of screen shots I have sent.

you can find videos on my site that talk about just this, but for a decade, I have

 Ben using a app developed by 

Szymon Klimaszewski.  His new group,

On facebook, the first 100 people to join, and email him, get to enjoy all

 of his services for free.

most everything else is free, or small add to watch.

https://www.facebook.com/groups/bloodpressuregroup

https://www.facebook.com/groups/bloodpressuregroup

Available on Google play, 

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

One of my graphs, shows how my blood pressure and pulse has

 reacted to one of my therapies.

Thanks for reading, and hope this App can help with a 

 cuff blood meter being used (not watches, as accuracy)

Stay safe, join my group, leave a message!

joey

How they found Primary progressive MS

MS focus magazine has a great link for symptoms of MS. I don't think I need to repeat a great story already written, so here is an appropriate link.

 https://msfocus.org/Get-Educated/Symptoms-of-MS

I was diagnosed with Primary Progressive Multiple Sclerosis a decade ago it seems. Copaxone was one of the only Disease Modification Therapies, "DMT" availiable for me.

I've hit everything on this list above plus more. Each are additive, so you never get better.

My double vision, was just a ongoing part of optic neuritis to this date. Clenched fist, a  old time heart medicine, clonidine, was used to for my MS. It released my clenched hands up.

My first real neurologist specialized in MS., was out of my county, referred by a smart country Dr, who had dogs and birds in his office. i New his animals by nane.

 Even though the local bandage hospital in my county had put NO MS in large print, the lady who read all the MRI, had no experience with MS.  I asked for a copy, this is when they were still on large film images. Many were taken.  My local GP, said " they did not go far enough". This is before I knew he suspected MS.

The new neurologist was a smart guy who listened, short in words though. He looked at my images, and said they took some great ones. He then scheduled me for a Spinal Tap the next day in his office. Yes a skilled surgeon, he did this procedure, with me lying flat on my stomach.

I can not go into graphics, as could not see the big vial of spinal fluid taken out, or other instruments used to keep pressures proper, just told to keep still. Yes you feel size of needle penetrate the skin, but that was all, as area was pre numbed.

Many more blood test were taken to rule out anything else other Drs may of missed.

I went home, kept laying down,  keeping hydrated all day. Had no problem.

The next visit, to go over the results, of what he found in my spinal fluid, was parts of the Mylen floating around. Brain matter suggestion of MS. The lesions on the MRI, of one old one and three active ones, were as clear as day, if you knew what you were looking for. He showed me on the film.

 He thought I had MS going in for some time, looking at first lesion. But I was diagnosed fast. First year  i was mis diagnosed of Cryps. chronic regional pain syndrom. A year on opiioids and enough morphine, the pharmacist thought I was picking it up for someone on their deathbed.  This all change with the proper diagnosed primary progressive Multiple Sclerosis, along with degenerative disk disease.

I was weaned off the morphine and opioids.  Lyrica and cymbalta are used to treat the pain.  Looking back, not all generics are the same as the real name brand. Name brand is needed.

Copaxone was started at that time, Matt had a video I watched on how to inject. He was twenty. I also started Botox treatments deep into calf muscles, as the maximum  muscle relaxer, Baclofen had been used. . I have kept up with this treatment, going up on botox treatments, now being done at the University of California Davis, as amount needed, and the retirement of my neurologist.

I even went to asking my neurologist I had questions from my book on ideas, tried, or being studied. Tonic water was mentioned, because of quinine it had. I researched, and found Jeffery Morgan's recipe for making tonic from the quinine tree bark. I went over this and calculations of how much I could  take to obtain results. 22 grams I shot for, or a shot glass. I did not use sugar, as weight gain from other medicines.

But quinine stopped major spasms.  A conversation also got us talking about a tablespoon of mustard taken. It also stops spasms. Drs do not know why, as taken oral, and must go thru the digestive system.  There are other items tried, that have worked, like  taking pure turmeric curcumin, before they became in a pill and have junk put into them.  A digital scale was purchased, reading down to milligrams. I found a pure INE in London finally.

Hyaluronic Acid was tried, to put space between bones. This was finally found in london, with the pure form needed, now in a pill form that works. Chrodrotion sulfide was added to help strengthen ligaments.

AlA, alla lipoic acid, was added by my UC davis neurologist. All supplements went thru my neurologist, to see if they would hep, or were just a snake cure.  A supplement was given by neurologist, but on second visit, was why did the contaminate the good ingredients with a questionable one. I still get adds from this company and question their products, along with all the others, like magnesium used to assist in keeping muscles relaxed, what is its purity.

What is really in it, quality?. . vitamin D was added, as I was At rickets stage. A Endocrinologist has followed my journey. I am needing over 180,000 Iu  weekly to keep a #80 score to protect my MS, as this shows to be the best protection at a dose #80-100, but keeping calcium out.

I am also on Testosterone Therapy. Many Priorblogs will show this. Used to keep muscles going with me,  but also can be related to thick blood. The cancer center took DNA checking to find iron overload to add to my ever growing list. A Rare H63D geems.   They thought It was the testosterone therapy, as had been on mega amounts, due to a oversight of a decimal point. But a quick stop to this, and six months to get it out of my system, a MRI of the pituitary gland showed I was low. On small amounts till they figure my thick blood out.

That is a problem.

Guess this is where I stop your reading, letting you go back in time to read other blogs. I have posted some great videos about how blood is made, heartbeats, and phlebotomy done, MS symptoms and guess what's not posted yet.

Cheers, like the poist, join the blog,

JoeY

Red Blood Cell Formation showing mutation H63D Iron

 in one of the forums, polycythemia was mentioned. i asked some questions, and think i gave the person enough information to ask her Doctor, as Multiple Sclerosis may of been plausible for what my blog was saying, and what was told.

 Everchangingms.blogspot.com I could go and try to explain How Red blood cells are formed, how this relates to my H63D gene mutation, and how this relates to Multiple Sclerosis, Iron overlaod, Thick blood, but I think its better described by this guy.

 you dont need to be a scientific person, or even know the terms he talks about. Just follow the video, the best you can. this will give you questions to ask your Doctor, or a understanding of what your Doctor is talking about. polycythemia, thick blood, hereditary Hemochromatosis, gene mutations, blood letting, vein punctures, phlebotomy, or just low in iron? Multiple Sclerosis, or a wide range of items that comes with MS?

 this is Part One of two parts of blood formation. i have this guy on other Videos, to explain my blood, 

Expert Doctors I go to at the University of California Davis, USA 

 Many genes are tied to Multiple Sclerosis. Hereditary Hemochromatosis runs in both my family lines. hard to get people to understand. Many Specialized Doctors and Science looking into this on me. They know as far as their specific specialized medicine, so you need to put the parts together sometimes. I use them all as team members, letting each one know of a part they have found. Its always something new, and some blogs, I still need more input and test done to find out more.

  b

But thats the blog this week.

 happy holidays to those around the world and remember to join my blog, and follow me

  JoeY

Poetry by Robet Gillett in MS Focus Magazine

 Everchangingms.blogspot.com. featuring Blogger Robert Gillett

This poem, just written by Robert Gillett, from the blog, beneath the tracksuit.

You can find his link to the right.  This was published on page 44-45 of MSFOCUS.ORG magazine, volume 23, issue 4, Fall 2021

Robert has a great blog going, and now published in a magazine.  You may need to get a free copy of the magazine to read this, or check out his blog, from my reading list.

I will leave you with his blog to read from today,  as I deal with my MS and Dr setbacks of rescheduling six months away.  Glad to have his support staff. This Dr works in the ER room, and with this new covid strain, omicron, and him being head of staff,  he is busy.

January, I will see my MS Neurologist in person.

Cheers 

Joey

 

Ten years and a Team of specialist for MS

 

Everchangingms.blogspot.com

Ten years plus into MS , and a great team of experts working with me, not on the list is the entire support team behind the scenes, who answer emails, get medicines approved and much more. This is only part of my team.

Hope you can click to enlarge this to show you the expert Dr Specialist that are part of my Team.

There Are Many more in the background that are not pictured, like the Staff who checks me in, the nurse who takes my vitals,.

A entire team behind each Dr to check emails, to get Approval of Medicines, Prior Authorizations, ones who are on top of everything, to keep Drs running Smoothly.

Doctors who specialize from Sacramento Heart, eye optometrist and dental team from the Mact Clinic.  There is the opthamologist, A skin specialtist,and their staff.

The testing staff, and their Doctors, that did Sleep studies,  plumagology studies, studies following trials with access to pharmaceutical grade items. A neurologist that had the expertise to do a spinal tap in his office, all the test with waveforms and scribble lines he had to make reports on. 

Keeping track of progression over ten years, has tons of paperwork, now done on computers.

Its a team working to solve mysteries.  To Try items that make me more comfortable going past the Ten Year mark With PPMS.

A Great GP that listens.  A Endocrinologist who goes above and beyond to question items.  My Botox Neurologist who can find the exact knots, and wants to keep learning how MS is progressing.

A journey that is written down for science to understand. A blog, but more notebooks, and much more information at DNA research sites. DNA that shows different parts in families. Sibling with same or different diseases.

A community of blogs followed and read to understand my complexity of primary progressive multiple Sclerosis. From Bars of London, to distant lands

The many medicines needed to keep me going , and the weird items used, from vein punctures for hereditary Hemochromatosis, to the weird genes I have came up to ask about, and strange test they have made up for me.

But for all, a Happy Holidays, and stay safe and healthy for this next year

Joey