Butterf!lies and Multiple Sclerosis

 

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                                 Butterflies and MS

Why even call or say something like this? Seems strange on its own, but I. Am sure everyone can relate.

"The life cycle of a Painted Lady butterfly is approximately three weeks. Female butterflies usually lay their caterpillar eggs around 5-7 days after emerging from their chrysalis. Baby caterpillars hatch from the eggs after three days. The growing caterpillars will then eat for 10-12 days before forming their own chrysalides. Finally, adult butterflies will emerge from the chrysalides after 7-10 days, starting the life cycle all over again!"

What does this have to do with MS?  There is a term used like I have "butterflies in my stomach", usually referring to the unknown, or a churning feeling given at any moment.  This can manifest into the above cycle of learning, exploring, and redoing the same as new items are found.

RimabotulinumtoxinB (Myobloc), also called botulinum toxin type B, is made from the bacteria that causes botulism. Botulinum toxin blocks nerve activity in the muscles, causing a temporary reduction in muscle activity.

Myobloc is used to treat cervical dystonia (severe spasms in the neck muscles).

I have many unknowns with Primary Progressive Multiple Sclerosis. This includes waking up with shooting zaps from my legs and neck muscles, wondering if they will support me.  On other blogs, I talk about the 

                                  Black Box Warning.

This is for  botulinum toxin type b I recieve every three months. Its cycle is like a butterfly. Mine is injected with fine needles into many muscles of my calves, neck and thigh muscles. The botulinum toxin then starts to spread over the next few weeks, making its cycle of reproduction into, deadening overactive muscle nerves that are part of my Multiple Sclerosis sending to them erroneously.

symptoms can also occur in adults treated for spasticity and other conditions, particularly in those patients who have underlying conditions that would predispose them to these symptoms. In unapproved uses, including spasticity in children and adults, and in approved indications, cases of spread of effect have occurred at doses comparable to those used to treat cervical dystonia and at lower doses.

The botulinum toxin continues its life cycle, for me, lasting about 52 days. Short of the 90 days, that is required to wait for the next injections, or new cycle to begin. 

Even on with a computer guidance system, the professor of the Neurological department, knows which muscles, injections, spots, muscle names, and where he is trying to obtain the best result, using the entire allotted amount of botox in many sites.

Of course, not all sites get addresses at a single visit. It takes time for the botox to multiply and travel into and thru the muscles. A Cane helps me walk into and out of his office, feeling immediately the botox injection.

A black box warning

The botulinum toxin contained in this medication can spread to other body areas beyond where it was injected. This can cause serious life-threatening side effects.

This is where the benefits outweigh the risks for me. A special form is signed by me before the neurologist can inject.

A weird process to look forward to, that I just had done, and done since the beggining of my diagnosis, every three months.

 And the butterfly process begins again.

As far as butterflies in my stomach, is always the unknowns. I can research many items. Some outside my control, some just numbers that specialists look at from blood work.

There are items I share with my Neurologist, I will post links in another blog to keep you reading. They thank me for the links, as it pertains to the Rare H63d genes I have, and also  to specific topics. You (my audience) gets to wait until I see the proper specialists, so I can obtain their perspective.

Anyways, thanks for reading!

Post comments below, or on my new YouTube channel by looking for Everchangingms on YouTube.    Everchangingms 

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Stay Safe

JoeY

MS, H63D Hemochromatosis Are Associated with Primary Hypertriglyceridemia

Hypertriglyceridemia the thought of the day.

 The association with Multiple Sclerosis, the H63D gene mutations, and what it is.

high level of a certain type of fat (triglycerides) in the blood.

• Treatable by a medical professional
• Requires a medical diagnosis
• Lab tests or imaging always required
• Chronic: can last for years or be lifelong

Elevated triglycerides may contribute to many items,  much to many to get people excited without blood tests, and talk about in this blog.  My next blood tests are at the end of the year, followed up in January 2021 by a endocrinologist, my cancer Doctor, GP, and heart Dr., along with others.

Most people with elevated triglycerides experience no symptoms.

https://academic.oup.com/jcem/article/94/11/4391/2596710

Mutations in HFE Causing Hemochromatosis Are Associated with Primary Hypertriglyceridemia

My Journey through Hypertriglyceridemia goes on for years now. When the levels of Iron were extremely high the summer of 2018, my tryglicerides were also in the Hypertriglyceridemia stage. The inter relationship of this and high iron , Hemochromatosis, caused by the the gene mutations of both H63D genes, is quite rare, and listed in rare diseases.

When my first thru seventeen phlebotomy or vein puncture were done to remove blood from me weekly, that started October 2018, my mind set was on the rare H63d genes involved, and the iron.

My Tryglicerides dropped in half after the phlebotomy, or vein punctures were done early 2019.  But that still left me with Hypertriglyceridemia going on.  My Heart Dr tried a drug known as Fenofibrate with me. Since the Heart is a muscle, and can be affected by multiple Sclerosis, he has been thru me on this entire journey as part of my "MD Team"

For those now curious, my heart Has always been fine. EKG done many times by many Drs. A Echo of the heart is done yearly, always looking good.  My Cholesterol levels looks great. My Heart Races like I am in a Marathon, even if sitting still. This is caused by MS.

I use a app, my heart or blood pressure designed by 

Http:www/Klimaszewski.mobi

Great app. I use a cuff on arm to put data into this App, or data from different Drs gives me many results. Shows when I was put on a heart pill, to lower readings, and data back many years. Of highs and lows.  This shows a GP not giving me a EKG, and his report even shows how high. It was my first and last appointment with him.

The Fenofibrate I became extremely allergic to. I was one of less than 3% that had a negative reaction, being caught by my Endocrinologist. Three days off, dropped my readings. Vascepa was the next Medicine to try by my Heart Dr.  This is like taking 34 omega 3 fish oil pills, but put into each 1 Gram Pill. 4 Grams daily. No fishy taste or burps.

But is supposed to help tryglicerides.

My Cholesterol is normal.

Berberine hcl, and Taurine, red yeast rice, CoQ10, along with other natural substances are supposed to help. I would check with your Dr before trying anything I have listed, as I am not a Dr.

H63D & S65C ~ The Forgotten HFE (Haemochromatosis) Mutations

Private group on Facebook is a great source of information.

1 in 100

Medications used in the management of hypertriglyceridemia include the following:

Fibric acid derivatives (eg, gemfibrozil, fenofibrate)

Niacin (slow-release, immediate-release, extended-release formulations)

Omega-3 fatty acids (eg, icosapent, omega-3-acid ethyl esters)

HMG-CoA reductase inhibitors (eg, atorvastatin, fluvastatin, pitavastatin, pravastatin, lovastatin, simvastatin, rosuvastatin)

The diagnosis is made on blood tests, often performed as part of screening. Once diagnosed, other blood tests are usually required to determine whether the raised triglyceride level is caused by other underlying disorders ("secondary hypertriglyceridemia") or whether no such underlying cause exists ("primary hypertriglyceridaemia"). There is a hereditary predisposition to both primary and secondary hypertriglyceridemia.[1]

Sending me notes or any info on tryglicerides will always be helpful. This is a gene handed down generations ago.

H63d/H63d means I will always be watched for iron. The tryglicerides connection is something newly found, and other members have chimed in stating the same.

Thanks for reading 

Joey