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
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 firstname.lastname@example.org. Thanks in advance for those looking to get involved
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.