Multiple Sclerosis Ever Changing
Multiple Sclerosis Everchanging. Trials, experiments, medications, research, scientists, . A blog of a real patient, his details on how MS keeps him actively looking for items that help, real time research, articles with links to university experiments, drug manufacturers experiments, bloggers, and more
Everchangingms.blogspot.com
Anxiety and Multiple Sclerosis has been mentioned on many blogs I read. Until you have experienced this, it is all just words being read..
Anxiety can be manifested in many ways, or to me it is a cause and effect situation that is happening either in my mind, or playing out in reality.
Some examples, would be a change in insurance companies. One huge insurer bought out my plan. They have been doing this for the last ten years. Bigger companies swallowing up the smaller ones. A behind the scenes, the small ones are actually giant, like Walgreen, CVS, Rite Aid. They are now owned by giant companies overseas.
They make promises, but less and less medicines become available, or now need prior authorization, or a exception to their plan. They are playing Doctors, without a licence.
I have a great Dr support team, from UC Davis, that tries to ensure I obtain proper medication, and the amounts. But the Anxiety, and hours I spend, sometimes 4 hours with the insurance phone people to obtain meds creates anxiety.
Anxiety can also be created by other people. A elderly gentleman had my partner and I over. A simple haircut, and a computer check. He then said his insulin injections were acting up. He went into the other room, coughing. A RED flag for a imune compromised person with covid 19 killing over 500,000 people now in the USA.
He could of said, he was under the weather, could we come on a different day, but no. Possibly Exposing us, as one of the only times maskless.
He went to the clinic, who took his temperature, and said he was good. That was not a covid test we told him.
We self quarantined, having a covid test done five days later.
We gave him directions and registration on line. Then he wanted to come with us.. Hu??
Two days later our results came back negative. This was a major Anxiety for days. Every cough, or pain, you thought it could be covid.
Watching videos, our my favorite is our hummingbird.
Another example of a major anxiety, was a GP, who I never have seen, put into my chart a CKD diagnosis. I will talk about this in another blog, as I need to go into specifics. The Anxiety, was awaiting to get feed back from All my specialists that were being seen over a few month period.
The CKD, given in November 2020, I was not sure I would make it to 2021, as explained.
This of course got me a referral to a Nephrologist. A new specialist to add to my list. A good item.. A New GP was also given this year. This GP is more attentive to details, and listens, asking questions. She is like the First GP I had at UC Davis.
Another example is our Westie. She just turned five, but was diagnosed last year with Cushing disease. Yes quite common in older dogs. But a alarm went off with my partner and i , when we saw blood in her feces, with diahrreha. A call to the vet, and bringing her in for X-Ray and blood tests. Four hours later, we were able to bring her home. We got to explore the dollar tree, the supermarket and high prices, and a local coffee shop, sitting outside. Not much more is in town.
Anxiety can manifest in many ways. It can increase your blood pressure, your heart rate, Iratate your stomach, and more...
Which brought in a few more specialized Doctors, just to look at blood, blood flows, A Secondary Polycythemia going on per cancer Doctor.
This brings more tests, like a sleepover at the hospital, A plumagology test, and others I will talk about in future videos, and try to explain the making of blood.
Just take a deep breath I tell myself, and say its not just MS.
For all my blog followers, Facebook, Instagram, and other sites, Rare Disease has become part of my life. My partner and I were invited to Rare a disease Day a few years back, in Sacramento, California. I blogged about the event back then. The Zebra, one has made it to Alaska for my mom. The Event opened my eyes on how rare of a disease I have.
I am a patient with primary progressive multiple Sclerosis, researching all aspects.
In 2018, I was sent to the Cancer unit for Thick Blood. UC Davis found two copies of the H63D gene, causing Iron overload. Less than 3% are diagnosed with hereditary Hemochromatosis. I went thru 17 phlebotomy, to bring down iron.however, since I was the first person they have seen with the rare H63D gene, my iron never returned two years later. This has recently caused complications, so writing this beforehand to be published.
2021 the world is in a pandemic of the Covid that has killed more than wars have.Special masks are required to go out. Only specific Grocery Stores and Needed necessary stores open. Many businesses did not make it thru 2020, when the virus hit us hard from China.
A Vaccine is sitting, awaiting in California for months now. One of the same researchers of the covid vaccination may of stumbled on one for MS.
This day helps me reflect on how far I have come in researching the H63D Gene, genetics of Hemochromatosis, iron or anemia.
The Rarity of my Gene.
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A Rare set of two copies of the mutated H63D Gene can cause iron overloading in less than 3%. I happen to fall into that category.
rs1799945(GG)5H63D Two copies of H63D, 5.4% chance of iron overload. This I got.
HFErs1049296(CT)3Pro570Ser - risk allele: T (Pro589Ser) This is called TF C2. It creates an increased likelihood of iron loading when combined with any c282y and h63d because it forces a reduced TIBC resulting in higher levels of free iron and free radicals. This also Increases susceptibility to Alzheimer's disease but only when combined with c282y.
I had 17 phlebotomy or vein puncture in last quarter of 2018. My Iron has not returned two years later. My gut derailed after phlebotomy. My EGFR dropped to 45 during the 17 phlebotomy. This causes concern for CKD, to be talked about in another blog. Hematocrit and blood thicker than pancake batter.
Mutations in HFE Causing Hemochromatosis Are Associated with Primary Hypertriglyceridemia
Back to this pesky H63D gene needing to write again on.
This does concern the Primary Progressive Multiple Sclerosis disease I was given in 2012, and the multitude of diagnosis that came afterwards, all inter related. I hope some scientist can figure this out.
Pro570Ser - risk allele: T (Pro589Ser) This is called TF C2. It creates an increased likelihood of iron loading when combined with any c282y and h63d because it forces a reduced TIBC resulting in higher levels of free iron and free radicals. This also Increases susceptibility to Alzheimer's disease but only when combined with c282y.
But I have two copies of H63D, that one less than 3% get iron overloaded.
This gene has been With me my entire life. It is hereditary.
Hemochromatosis is one of the diagnosis in 2018. Thick blood, that the endocrinologist sent me to the Cancer Center. It took them a few DNA searches to find, but two pair. Less than 3% have Hemochromatosis caused by this gene. My Iron, Hemoglobin, Hematocrit, Transferrin were high, along with Hypertrycglimeria stage I was in.
17 phlebotomy or vein punctures for my Europe readers were done last quarter of 2018.
Two years later, no iron has returned (or a little, since they allowed me to use cast iron skillet again, and spinach) but iron still low, barely on the chart.
My blood was thicker than pancake batter.
Does this still make me anemic two years later? Depends on which Doctor you talk with
Is this being anemic for two years? I kept doing my blood labs every two months. with iron not moving. The hemoglobin is on high side now. So does this make me iron deficient?
Lots of questions, so asked my medical team.
Ferritin 13, iron 49, Transferrin 305H, Total iron binding 424H, Iron sat11.6% low. This is two years after phlebotomy Erythropietin was 25H. Creatine still high, along with Tryglicerdimia
As anemic, has its own set of problems, and other diagnostic items of what it can damage, and so does low iron, and MS.
I belong to a Hemochromatosis group. had family checked, as hereditary. Found two others given diagnostic from this pesky gene. I asked to become a member of anemia group, and iron group to find out more of what came first?
What if I had anemia my whole life, but it was drowned out by Hemochromatosis, and MS? I found a site, https://www.anemiaid.com/
This will check your DNA for free. I sent request to my cancer Dr.
I also found interesting info from these sites I emailed my Dr team.
My GI symptoms went south when I had my last phlebotomy. He did not see coordination of iron playing a role. He is a great GI Dr. Linzess along with laculose was given. He informed me from my last upper and lower GI, that I did not have ulcerative colitis, but IBS-C. He did more test to verify this. A breathing test to check for hydrogen. Used l lactulose, so had to be off this for a week. Constipation. A emptying test.
I have also had a swallowing test, that showed problems. Eating radioactive food, never sound appealing.
I am also on metoclopramide, as my MS is not giving my bowel muscles the proper signal to muscles to move food along. This was also tested, by going off this medicine for months, and being put back on. I call this a Black Box medicine, as may interfere with my other meds. My drug company always has to check with GP, Neurologist, and GI Dr to get ok.
But GI problems go with MS, hand in hand. However, if you do not have iron, another story.
Iron is a absorbed in the lower intestine.
I have problems absorbing items there, as a test with vitamin D was done, with the assistance of my endocrinologist. I was able to take 50,000 iu/day less tablets, by just changing time of day taken. A oil pill, like Vascepa, but interference with some genes and possibility meds.
Not that Iron is the solution, but why am I not absorbing from foods, cast iron skillets?
If regular Hemochromatosis, I would be making new red blood cells every four months. The bone marrow, would tell this. Also I would need to give blood every three months for Hemochromatosis levels.
So not to go into any new diagnosis given, I asked my team at UC Davis to check on more items. This may add a new team member, but that's for another blog.
Would love feedback from anyone.
Stay health and safe. Be sure to like my blog and YouTube channel.
This amino acid is very important in gut healing. Glutamine helps to maintain the integrity of the intestinal wall and therefore aides in leaky gut. With less intestinal permeability means less microbes can get through the gut wall, decreasing infections. It is also fuel for hepatocytes, improving liver function.
Zinc is involved in many biochemical processes in the body including protein and DNA synthesis, carbohydrate metabolism and antioxidant systems. It is therefore important for effective digestion. Wound healing and normal immune responses require zinc, so it is great for IBS sufferers and their overall health. Zinc deficiency has also been linked to depression. Zinc supplements can cause nausea on an empty stomach so please ensure you take it with food. Foods high in zinc include all meats, pumpkin seeds, eggs, and seafood
Magnesium like zinc is one of those nutrients that is part of hundreds of processes in the body. The main ones that affect IBS are:
While calcium contracts muscles, magnesium relaxes them, so for those with cramps this is important to make sure your body has the resources to relax muscle. Magnesium can help reduce discomfort and pain caused by cramping.
Stress and anxiety use up a lot of magnesium. These have been identified as trigger in many people with IBS, so it is very important to maintain good levels of magnesium, so you don’t get depleted.
Magnesium is also used for sleep and relaxation so very important for everyday wellness.
You can take magnesium as a supplement but be careful with the form of magnesium that you take. Magnesium oxide is the most common form found in supplements but is used for bowel cleansing as it is not well absorbed. Look for magnesium citrate, chelate and malate
Magnesium rich foods include almonds, avocado, and figs. These foods are all high FODMAP, so as IBS sufferers are often avoiding these foods, this can often lead to low magnesium. Some low FODMAP foods high in magnesium include spinach, pumpkin seeds and Brazil nuts.
Vitamin B6.
Vitamin B6 is also known as pyridoxine. B6 is absorbed in the small intestine, so problems with absorption can occur in those with IBS. B6 is very important for mental health as it is used to make serotonin, dopamine and GABA neurotransmitters, basically all of the happy hormones. As mental health is an important part of IBS treatment B6 is crucial.
Iron and B12
Many people with IBS end up with iron-deficient or B12-deficient anemia because of issues with absorption. Those with IBS-D are especially susceptible as this causes absorption to be low. With the high levels of inflammation often present with IBS, this can cause the digestive system to be unable to absorb both iron and B12.
The H63d genes I have, play into this. I absorb iron from both these genes, making phlebotomy or vein puncture needed to get rid of iron,
But then dangers of being anemic, I will blog about later.
I’m lumping them together here as they often go hand-in-hand and while not essential for treatment of IBS per se, they are important nutrients to keep an eye on, so you don’t have further health complications. Therefore, if you are feeling tired and fatigued all the time make sure you check your iron and B12 levels. Make sure you get appropriate testing and consult your medical professional before taking iron or B12 supplements.
As always, consult your health professional before taking any supplements.
Multiple Sclerosis and food, Diets. You can Google and get every type of diet out there.
The current Fad Diets, like keto, not proven.
i tried being being sugar free. Less than 4 grams per day. Sure lets you become aware of how much sugar is in everything, and also hidden sugar. Even yougurt was off the list, milk, and a ton of other items by reading and understanding lables, and how they hide the sugar now. becoming a vegan, going gluten free, milk free, and many more explored.
Many multiple sclerosis meds cause weight gain, almost overnight. I am not exempt from this.
My GI Dr suggested the food map diet. Eliminating everything and adding it back in slowly to see what bothers your GI system. I went a step ahead, did a DNA, that showed foods to avoid, super foods, and cautious ones. This seemed a no brainer, with probiotics, vitamins, and recommendations made by viome.com, and my nutritonalist.
The food map was interesting, and kinda exciting finding super foods, and ones to avoid, or bring back slowly.
Canker sores. Research shows that applying a gel containing berberine can reduce pain, redness, oozing, and the size of ulcers in people with canker sores.
Diabetes. Berberine seems to slightly reduce blood sugar levels in people with diabetes. Also, some early research shows that taking 500 mg of berberine 2-3 times daily for up to 3 months might control blood sugar as effectively as metformin or rosiglitazone.
High levels of cholesterol or other fats (lipids) in the blood (hyperlipidemia). Berberine might help lower cholesterol levels in people with high cholesterol. Taking berberine for up to 2 years seems to reduce total cholesterol, low-density lipoprotein (LDL or "bad") cholesterol, and triglyceride levels in people with high cholesterol. When compared with standard cholesterol-lowering medications, berberine appears to cause similar changes in total cholesterol, LDL cholesterol, and high-density lipoprotein (HDL or "good") cholesterol, and it might be better at reducing triglyceride levels.
High blood pressure. Taking 0.9 grams of berberine per day along with the blood pressure-lowering drug amlodipine reduces systolic blood pressure (the top number) and diastolic blood pressure (the bottom number) better than taking amlodipine alone in people with high blood pressure.
A hormonal disorder that causes enlarged ovaries with cysts (polycystic ovary syndrome or PCOS). Research shows that berberine can lower blood sugar, improve cholesterol and triglyceride levels, reduce testosterone levels, and lower waist-to-hip ratio in women with PCOS. Berberine may even lower blood sugar levels similar to metformin and may improve cholesterol levels better than metformin. It is unclear if berberine increases pregnancy rates or live birth rates in women with PCOS.
1: Reduces Cholesterol and Triglycerides
Significantly and Safely
Big Pharma has created a multi-billion-dollar industry around controlling cholesterol and triglycerides with a "solution" that too often negatively impacts other aspects of your health.
Thankfully, berberine can come to the rescue. One study of participants with elevated cholesterol and triglyceride levels reported that taking 1,000 mg of berberine daily for three months led to a remarkable 25% drop in LDL and a 35% drop in triglycerides—as well as a 29% reduction in total cholesterol—with no side effects.[1]
Another study found much the same. In this second trial, scientists recorded a 21% reduction in LDL, a 36% reduction in triglycerides and an 18% reduction in total cholesterol—just by taking 1,000 mg daily for three months.[2]
And here's another reason why berberine is such an extraordinary antioxidant...#2: It Dramatically Improves Metabolism,
Promotes Weight Loss and Boosts Energy
How Effective is Berberine for Weight Loss
"Berberine has already passed a handful of important demonstrations of efficacy. In 2012, for example, one study showed that obese human patients lost an average of 5 lbs over the 12-week course of treatment.4 While these results may seem modest, there’s more to the story. Significantly, the patients in the trial experienced a 23% drop in their soluble triglyceride levels and a 12.2% drop in their cholesterol levels beyond what would be expected from weight loss alone. This means that berberine helped the patients lose weight while simultaneously reducing the harmful chemical correlates of being overweight; high triglyceride and cholesterol levels are associated with many of the negative health outcomes of being overweight. As such, berberine provided valuable protection of overall health."
The supplemental benefits of berberine are best taken advantage of by people who are concerned about their metabolic health, want to reverse the negative health effects of obesity, or who want a chance at improving their blood glucose regulation and fight back against metabolic dysfunction.
It’s been studied most intently as a way to help treat insulin insensitivity in people who have type two diabetes or who have metabolic syndrome. However, berberine also finds applications in helping with other health issues commonly associated with an unhealthy diet and excessive body weight, such as high cholesterol and high blood lipids.
While berberine is not, on its own, a fantastic weight loss supplement, it does do a fairly good job helping to ameliorate the negative health effects associated with being overweight. It might help lower your body fat percentage, but it’s far stronger at improving health than just reducing the number that you see on the scale.
Some research suggests that berberine works for weight loss, but not as well as some of the more high-powered compounds for weight loss like green tea extract. Its real strength lies in changes to your body’s metabolic health. So taking berberine might be helpful as you are trying to lose weight, so you can move your body closer to a metabolically healthy state.
Interestingly, berberine also has a dedicated core of advocates among people who have irritable bowel syndrome. While the mechanism of action here is not entirely clear, clinical research does support the use of berberine to reduce some of the symptoms of irritable bowel syndrome, so if you have gastrointestinal problems attributable to IBS, you may have success using berberine as well.
https://bodynutrition.org/berberine
https://www.stopagingnow.com/berberine56
Alpha lipoic acid is another one I am on.... Like many prescribed by my neurologist.
Alpha Lipoic Acid (ALA) is a vitamin-like compound that is used in the body to break down carbohydrates and generate energy for the body’s organs
Natrol® ALA is also an antioxidant, a substance that neutralizes potentially harmful chemicals called free radicals and thereby helps prevent cell damage in the body. What makes alpha lipoic acid unique is that it functions in both water and fat unlike the more common antioxidants such as vitamins C and E, and it is able to re-cycle antioxidants such as vitamin C and vitamin E after they have been used up.
Alpha-lipoic acid can improve the function and conduction of neurons in diabetes, as well as help with memory loss and mental acuity.
Taurine plays an essential role in metabolism and digestion, as it helps the liver to create bile salts. Bile salts help break down fatty acids in the intestines. Bile acids are the body's main way of breaking down cholesterol.
Mutations in HFE Causing Hemochromatosis Are Associated with Primary Hypertriglyceridemia
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
How the body digests and absorbs fat
Biologically speaking, the purpose of eating is to gain energy, nourishment, and building blocks for the body to continually renew itself. Fats are a great source of energy because, at 9 calories per gram, they have more than twice the energy potential of carbohydrates, and they do not cause cardiac events. But they do more than just supply energy.
Fats are the building blocks of phospholipids, key components of cell membranes. Fats store energy, and their components serve as intracellular messengers and help to manufacture hormones. Most of the fat we eat is in the form of triglycerides, which are large molecules. The body uses lipase enzymes to break them down into smaller particles. Most lipid digestion in an adult occurs in the upper loop of the small intestine, where a pancreatic lipase does the work. Fats may differ from each other by virtue of carrying different fatty acids, which may be saturated or unsaturated.
When we eat fat, stomach emptying slows and a small amount of fat is treated by gastric lipase in the stomach. This holds especially true for saturated fats, like those in butter.
The liver produces bile, stored in the gallbladder, ready to be shot into the small intestine when the fat gets there. Bile emulsifies the fat and introduces it to pancreatic lipase, whose job is to digest the triglycerides into free fatty acids and monoglycerides, which are then absorbed into the small intestine under typical circumstances.
Fat malabsorption symptoms
At the most basic level, fat malabsorption is a decreased ability for the intestines to absorb needed fats.
The signs and symptoms that someone who is lacking sufficient enzymes to digest and absorb fats may
bloating
gas
feelings of fullness
stomach cramps
diarrhea
pale-colored stool
floating stool
erratic bowel movements
Failure to absorb fats will likely engender additional symptoms, including:
dry hair and skin
premature skin aging
weak nails
sore joints
Where fatty acids are concerned, it also affects:
moodiness
anxiety by
depression
impaired cognitions
allergic or atopic conditions - eczema, ast byhma, hay fever
sleep problems
You may also see low levels of cholesterol, triglycerides, HDL, and LDL in your blood test results.
What are the health benefits of taurine? The most important role that taurine plays in the body is assisting with metabolism and digestion. Taurine is known to aid the body in the development of bile salts, which are ultimately used by the body to metabolize fats within the digestive system and thus can decrease the acquisition of body fat.
Some studies also note a connection between heart health and taurine consumption, as taurine has been connected to a decrease in cholesterol levels and an increase of positive heart functioning. Additionally, like many amino acids, taurine plays a role in muscle maintenance and development. The effects that taurine has on the heart and muscles can result in improved athletic performance and focus during workouts. Taurine also has been shown to improve mental focus, making it a powerful pre-workout agent.
Is taurine bad for your kidneys? Taurine is an important amino acid that plays a significant role in kidney functioning. Oftentimes, taurine is administered to those with kidney disease or decreased kidney functioning to improve their functioning. Taurine has even been prescribed as a treatment method for those suffering from diabetic nephropathy, which affects the kidneys (11).
Another blog is needed about Green Tea and Matcha. I will have to go into later, as this is getting extensive to understand, but each of these plays a role in Multiple Sclerosis and the Gut. This is More for me to find quick links, and of course to ask your Doctor before trying any of these.
Thanks for reading
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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 cervicaldystonia (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 cervicaldystonia 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
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.
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.
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.
This can be chronic, as most MS people will tell you. Fatigue for the common person or from one person to another is different. It is hard to explain, but like you have been hit head on by a semi truck. Sometimes just moving from one place to another is difficult, as Energy needed. Not that you don't want to do a project, just no energy, or to fatigued to do it.
My partner bought me a simple watch, but in its app it shows your fatigue level. Not sure of the algorithm used, or the accuracy of smiley faces, coffee cups.
Quite interesting, as sleep is a factor in fatigue.
My heart rate, EKG, Blood pressure are better monitored with a cuff, as these numbers never are accurate enough with any monitor. I use the monitor app mainly to track sleep and steps done daily. The Fatigue monitor, I will have to let you know with more use.
But for me, Fatigue is daily. I have used scales, like the pain scale to monitor daily fatigue. It can hit me instantly, or I can wake up already fatigued.
MS fatigue. It can be crushing, numbing, and stop the hardiest person in their tracks.
"If you have multiple sclerosis (MS), you might feel very fatigued from time to time. It’s different than normal tiredness, and it doesn’t get better with sleep.
The best way to ease fatigue is to treat what’s causing it. That’s hard to do when you have MS. But you don’t need to manage your symptoms alone. Your doctor can help you figure out what triggers your fatigue. They’ll suggest some lifestyle changes that may help. You might need to treat other issues like sleep problems or depression.
If that’s not enough to ease your fatigue, medication can be an option."
This is a quote from webmd.com
I am on Provigil, as it gives me a hour more awake time then the generic modafinil.
There are many medicines out there to help keep you awake.
My Neurologist kept me off the the ones which had many side effects, or were stimulation forming. Provigil does not work on everyone though, so thus talk to your specialists of side effects, or differences of different ones to try. There is a list of them, with new ones coming for narcolepsy that is used also. The prescription may need a heading like, for shift work from your prescribed to be prescribed. A weird insurance issue. A Sleep Study may be required.
Provigil (modafinil) is a medication that promotes wakefulness. It is thought to work by altering the natural chemicals (neurotransmitters) in the brain. Provigil is used to treat excessive sleepiness caused by sleep apnea, narcolepsy, or shift work sleep disorders.
The US Food and Drug Administration hasn’t approved any medicines to treat fatigue in patients with MS. But doctors often use amantadine, modafinil, and methylphenidate to treat fatigue in such patients.
Healthline. Com states
"Certain complications of MS can also induce fatigue. This may be referred to as a secondary cause. Complications of MS that may also cause fatigue symptoms include:
Fatigue can also be a side effect of certain medications, such as those used to treat spasticity, pain, and bladder dysfunction."
So you can see Fatigue is shown in many different aspects.
Chronic fatigue usually becomes worse as the day wears on. It can last for weeks, or never seem to go away.
There is a Delayed Fatigue, when major fatigue follows you for weeks, after doing a over exherting item. This could be a simple walk of going to far, or a exercise, mental or physical that overtires nerves that are being misfired by Multiple Sclerosis. One of which you are left with no Energy.
It can be acute (lasting a month or less) or chronic (lasting from 1 to 6 months or longer). Fatigue can prevent you from functioning normally and affects your quality of life. According to the National Multiple Sclerosis Society, 80% of people with MS have fatigue.
So lots of information to search for on the web, sometimes different searches will gather you more information to ask your Dr what to try.
I still end up tired, needing a nap in the afternoon, but can tell considerable how Provigil works with me.
Questions or comments, let me know. New Year comming up, As Insurance Companies like to play Doctor.
Multiple Sclerosis has many aspects. Some items people do not want to talk about, such as constipation or Diarrhea. My partner found a helpful solution, not to solve the ongoing problem, but one to help in the bathroom.
Most Guys would never think of using a bidet, and think they are only made for women, and a special toilet bidet needed installed. This is not the case, and this gadget I have found to be one of the best. It can be made for a man or woman. It can be heated, or unheated. Many versions.
This one hooks right up to your existing toilet.
Bathroom Luxury Meets Eco-Friendly
I was skeptical, but had mentioned one for my birthday to my Partner. A type of unexpected present for our home we call the Treehouse. This Winter I may be going WOW with cooler water!
A easy installation, and wonder why they are not being used everywhere.
It saves toilet paper, as all you are doing is patting yourself dry. We will have hand towels next to the bathtub shortly for just this purpose.
since we live are remote, and on a well, and septic, this will help our system tremendously.
Pathways to bowel or bladder dysfunction are common with Multiple Sclerosis. I read many blogs about this on https://irritablebowelsyndrome.net the newest
"a group of short-chain fatty acids and is thought to play several beneficial roles in the gastrointestinal tract."
These symptoms people have cross over from Multiple Sclerosis to daily people. One report said one in six people live with IBS. Sometimes caused by food we eat, or diets we try.
I am being a scientist with the help of a great GI Dr, his MD assistant, and a Wonderful Endocrinologist.
I run a list of what I have found doing research on products. This is not something I would recommend anybody doing, without talking to their specialists.
Since being diagnosed with IBC-C, bowel problems run in the family from diverculitis, to bowel issues, and generation before me having some type of bowel issues.
My GI has me on Linzess, A powerful medication. That I use with lactulose 50-90 mil to provide relief. Simethicone is used for the Bloat.
Ox Bile was tried, colon lining nutrition of calcium butyrate, magnesium butyrate, and butric acid. Digestive support Pancreatin of Amylase, for carbohydrate digesting, protease, for protein digesting, and lipase, for fat digesting enzymes.
Sodium Butyrate Bodybio.com had butric acid, which is a medium chain triglyceride MCT. It provided microbiome support, improved digestion, healthy metabolism.
Also on my regimine is Ceylon Cinnamon.Horbaach.com It is known as the true cinnamon. Used for supporting healthy weight, heart, circulatory, and joint health. Blood Sugars it also helps maintain.
My Heart Dr put me on Vascepa, Vascepa.com for high Tryglicerides. Berberine is also taken.
I take vitamin D. People with MS are low in vitamin D, but have your blood work checked by a Endocrinologist before starting, and monitored.
I have a new list I went over with my specialist, some amino acids, some mushrooms, some minerals to help digestion, and restoration sleep. The Dangers of some supplements that contain Griffionia Simplicofola seeds known as Hydroxtryptophan or "5HTP", as serotonin overload syndrome can occur due to other MS medicine I am on.
A warning that all supplements are not the same, or some may be low quality, or not even have what is listed in it. Wal-Mart, Walgreens, GNC all got in trouble years ago.
I try one at a time, make notes for few weeks. May try a combo that works better. Research the manufacture. I will have to make a second blog, on the next set of supplements, and which ones worked for me.
Let me know of ones I may be missing, or companies can send me a sample by emailing me for address
One of my stories was just published in irritablebowelsyndrom
