Hygge and Multiple Sclerosis

 

I have been having quite a few more test and items that I can not get my mind around to blog on, or even state, knowing outcomes, because of lack of research done. I am being a test subject in some newly made tests also for MS.

One article, I read the synopsis of, is what came first, the chicken or the egg?  My specialist have found this and other articles interesting, and let me know. These findings of course concern the stage of Multiple Sclerosis I am in. Blogs started to write, even some cool pictures, but its not just posting, until I get my whole mind around these changes. All my specialized Doctors are onboard, watching, waiting, and giving their thoughts.

My October 2021 labs are the best I have seen in quite some time. Still need to go over them with Doctors, but there are all just numbers for me.

my older Sister told me about Hygge.

The Danish concept of hygge, or hyggelig (adj.), refers to finding comfort, pleasure, and warmth in simple, soothing things such as a cozy atmosphere or the feeling of friendship. The Scandinavian term encompasses a feeling of coziness, contentment, and well-being found through cherishing the little things.

                         One of the Hummingbirds baby's first trip to feeder and flowers on his own.

Bug life

One of Wils quilts he made

WebMD shows this great article about MS

Unusual feelings with MS and Good foods to eat

But back to Hygge. Think Wil and I have been practicing this , along with others, for quite some time. Take a moment to look this up, and let me know. Have you read the book, is your lifestyle less hectic? Do you take the time for You?

Joey

EPO and Kidneys with Multiple Sclerosis

 

More Multiple Sclerosis items happening.  I have a Rare Condition which is making to many Red Blood Cells. MS, rare H63D Gene?, other genes involved.

Erythropoietin (EPO) is a peptide hormone that is produced naturally by the human body. EPO is released from the kidneys and acts on the bone marrow to stimulate red blood cell production.

An increase in red blood cells improves the amount of oxygen that the blood can carry to the body’s muscles.

Currently, October 2021 my EPO is working overtime.  My Red Blood Count is high. The Bones are being over stimulated, of where the red blood cells are being made.

A cause for concern, as this is one of the causes of Thick Blood. Not supposed to happen.

The Red blood cells are to large for what needs to utilize them properly.  I hope the following will help others understand that multiple sclerosis range in the blood also.

what-is-secondary-polycythemia

Secondary polycythemia, also known as secondary erythrocytosis or secondary erythrocythemia, is a rare condition in which your body produces an excess amount of red blood cells.

This overproduction of red blood cells thickens your blood. This thickened blood can’t pass through your small blood vessels like capillaries easily.

Secondary polycythemia is caused by some other condition in your body, usually the excess production of the hormone erythropoietin, or EPO. However, secondary polycythemia can be genetic like primary polycythemia but is not caused by a mutation in your bone marrow cells.

Red Blood Cell Formation part one

This talks about the EPO from the kidneys while making blood.

Iron deficient

Iron deficient hormones and fatigue

Thanks for reading 

joey

Feel free to email me with questions, or leave a note

Thick Blood came back MS progression

 I guess this should be another post on how my MS is progressing.

I came back with my labs showing Thick Blood again, June 2021. This hasn't happened since my last phlebotomy, in  2018-2019, and then I stayed iron deficient and low ferritin for two plus years. Kinda anemic. But concern from my Endocrinologist got me emailing every Doctor. 

 There was no iron or ferritin left to do any phlebotomy.  My Hematocrit and hemoglobin was high.  This means large blood cells carrying oxygen to organs.  I obtain blood test every three months, so doctors can catch items. My next one now being end of November 2021.

I still stay quite overly fatiged, have spouts of double vision. I walk with a cane, my legs, thighs full of Botox, along with the back of neck and right shoulder muscle. Botox last for 52 days, but USA government decided it can only be injected every 90 days. I am on some twenty plus medicines for MS.  My travel bag of medicine is larger than my pack of clothes.

The Thick blood, This was a major concern.  I am on testosterone therapy, which is always thrown as the culprit, but had been decreased from 2.0 to 0.4 since before the phlebotomies. The cancer Dr saying this was the culprit, but endocrinologist saying it was not. I confirmed this with her in 2016, by stopping testosterone therapy cold turkey (would not recommend this to anybody). This was done so she could do a MRI of pitulary gland. 

My Hematocrit and hemoglobin kept rising, I had to show her, so testosterone was not a reason to raise it, as I had stopped testosterone, and restarted at 0.5ml injection.

In 2018 Iwas then sent to the Cancer Center, Where they found Jak2 negative, but further DNA, showed two copies of the H63D gene. Less than 5% will overload with iron.  I went thru 17 phlebotomy, or vein punctures, once a week from Sept 2018 to Jan 2019 to lower Iron I had.

Tryglicerdimia  Hypertriglyceridemia-Cause-and-Symptoms.aspx. was also present. A drug fenofibrate was used. This drug spiked my creatine (kidney function) it came back to a normal for me once stopping this drug.  I am one of 5% allergic to this.  So now on Vascepa.

This lowered my iron overload, and no maintenance phlebotomy were needed since being low.  which they found weird, but monitored me.  left me anemic, or iron deficient and ferritin staying low.

Before the test 2021 test, I did another experiment. I had tried eating a lb of liver, but no change in my iron in June 2021.   During my next three month test, I stopped turmeric curcumin for a month, and ate extra red meat, perhaps 1/4 lb of liver and onions.

My next blood test came back, September 2021.  ferritin in range, but Iron High. I restarted curcumin and turmeric.   That is a secret to stopping iron overload.

But my hemoglobin and Hematocrit was high.

Still thick blood. Not enough items for a phlebotomy, However I was referred to the Plumagology lab when I got the results of thick blood.

The first phlebotomist test done was a breathing while inside a phone booth looking contraption, into tubes, like blowing out birthday candles, holding your breath, and then repeating this with a inhaler medicine. The tech mentioned muscular problems. He showed me the graph which showed the diminished volume I was at. Just opposite of copd.

You tube technical video of what test they are doing.

I get a 8000 ft simulated altitude test  in November 2021.  These videos explain more. Some may be technical, but just the understanding of pictures he draws are worth watching.  All these have to deal with MS.  I think I am part of a study group, with PPMS, that they are looking at breathing, chest walls, which are muscles.

Breathing part one

Breathing part two

Respitory at high altitudes

A more precise blog will be written once going thru the above test, and how they are related to multiple sclerosis.

In some other pre written blogs, I explain the blood cancer, and then a video o  blood to understand how it is made. A specific video will show where the  H63D mutated gene is at.  More blogs, not in any order to show high and low blood pressure.

Enough info for now

Thanks for reading.

Joey