Brain Fog

One aspect of mitochondrial disease and the effects that wears me out the most, is brain fog.  There are some days I spend the entire day just spinning my wheels going in circles, days where nothing I try to do gets done or else it’s not done according to the way I would normally do it.  At best, these days can be a blur and at their worst I forget them all together.  I recently saw a posting on a social media related to this, and the caption was about some new study and drug advancement.  The lead statement was basically “tired of losing things and trying to find them”.  I responded to the post, trying to be funny but serious at the same time when I said, “losing something yes, but more often than not, after five minutes, I don’t even remember having it or looking for it to begin with, so it’s alright”.

Anyway, I saw a video this morning and thought it was a good take on brain fog so I am sharing it with you all.

Chronic Illness on The Mighty

Support

I’ve been through a lot since I first started this website but over the winter I had several issues that kept me from posting regularly.  This is not something I want going forward and as a survivor of Mito it is bound to happen from time to time.  I will not be able to keep things going like I might like to do to this diease.  So I am looking for some like minded individuals to help contribute on the site with me.  If interested in contributing on Mitochondrial disease then visit me on facebook or email me directly at thomaswormsley@outlook.com. Thanks in advance for those looking to get involved

Looking for a cure

A cure may be on its way through stem cell research being done probably as I write this article I am sure. But for those of us caught up in this rat race feeling like the guinea pig of the medical machine what are we to do now. A cure for the future will be great and I don’t want to steal away any mad scientist’s accolades. But the truth is we are here now suffering without much reprieve.

A change in diet a handful of supplements and on you go. Now keep your chin up it could be worst, it can always be worse. Oh yes and we can never forget the I’ll see you again in 2, 6 or even 12 months from now but do call if something changes. But let’s not bring up that conversation of how their phones lines are all automated now and you will be luck to get a call back in a couple of day.

Please do not miss read me here because I do not believe these things are the doctors faults entirely. For one they didn’t give us this disease, but two the bureaucratic machine though now that beast we can blame for anything. Its what ties the Doctors hands really but I digress.

Looking for a cure that was are topic to which I am posting just a brief snippet from a website I have devoted a page to on my site. Oxygen Oasis Health by a friend and author. In it the author describes Six Pillars To Mito Health. I am still making my way through the reading but if the entirety is half as good as just the first part its a must read. The section call about the creator read that first and then if that doesn’t spark your interests well then you died and no need to read anything ha-ha.

First Pillar: Energy Conservation

What happens when you run out of “juice”?  Regardless of your energy source, if you use it all up, everything stops functioning.  Your body is no different.

At any given moment we each have an energy requirement that must be met through sufficient production of ATP.  Just as a battery becomes weak and the device begins to struggle to function until it simply can’t function anymore, so does our body when our energy demand begins to exceed what we are capable of producing.

Overexertion is dangerous; both over time and in some intense situations it can even become deadly.  In the 24/7 stress of the hustle and bustle of today’s busy world, it is difficult not to burn the candle at both ends.  Whether one is facing health issues or not, this is not a healthy lifestyle.  When the body is functioning well, one might feel minor symptoms of fatigue or brain fog but tend not to feel the full impact of the physical, mental and emotional stress being applied.  However, those struggling with health issues, even just the common cold, will quickly realize the energy draining effect of even the most minor of tasks.

Mitochondrial Myopathy

In May my Neurologist told us I had Amyloidosis  a rare protein disease. Amyloid is an abnormal protein that is usually produced in the bone marrow and can be deposited in any tissue or organ. Amyloidosis is a scary disease effecting fewer than 200,000 in the US. This diagnosis was given to me by the Neurologist from the results of a muscle biopsy I had done. Having a wide range of multiple symptoms not indicative to any one disease and muscle weakness being one a muscle biopsy was performed.

The biopsy report stated, “There is a small amount of congophilic material that is apple green on the Congo red stain with polarized light. This appearance is indicative of amyloid deposition.” The Neurologist after giving us this diagnosis told me and my wife that this was treatable and acted like we had gotten a break. We looked up the disease after leaving the Doctors office only to find that its wasn’t a break at all and in fact it was a very serious disease. That people with the disease usual travel to one of the only five place in the US who specialized in its treatment.

After a week or so of researching this we had my records and biopsy details sent to the Mayo Clinic in Rochester, Minnesota. We went there for a week to receive treatment for Amyloidosis and to gain a greater understanding of how the disease was effecting so many parts of my body. It was the first day we were there that the nightmare began. The first Doctor we saw questioned us on what brought us there in the first place. He suggested boldly that he wasn’t sure I had Amyloidosis at all.

At the time we didn’t know it but they had misplaced all my records at the Mayo and since they didn’t have the information found in those reports they just made the assumption I didn’t have Amyloidosis. Test were performed during the week we were there consistent with Amyloidosis testing and those result were negative. So now not only had we traveled over 500 miles from our home to seek treatment for a rare protein disease but according to Mayo we didn’t even have the disease. They did finally find our records on our last day but claimed that the Congo red staining was a controlled sample without any muscle tissue on it. We left Minnesota back for home and felt unsure about everything we had been through both our Neurologist’s diagnosis but also Mayo’s as well since they were so very rude to say the least and made a lot of assumptions without our medical records.

The muscle biopsy was reviewed again this time with both the original pathologist and Mayo’s pathologist looking at it as well. And this for me is where it get funky in that the #1 Addendum is reference to Amyloidosis and the Congo red staining and a #2 to Mitochondrial Myopathy. So which do I have and why is it my Neurologist only chose the first and not the second not to mention there is a combination of the two I read about somewhere. So that brings me to the #4 where Mayo is referred to as not seeing muscle on the Congo red stain and calling it a control slide though the report states that other images were sent as well in reference to the Amyloid deposits but their report neglects to mentions those other images the Local Pathologist sited.

So where am I going with this who knows here I sit having wasted in my opinion 2+ months and $500.00 dollars going to Mayo and all I can show for it is my aggravation. Oh don’t get me wrong I have the Biopsy report showing both diseases just I am still really waiting now to see a Doctor who knows something about this stuff and doesn’t have their head up you know where as Mayo did.