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Just Because it's the End of MS Awareness Month...


Our Dearest Customers,

As some of you know, March is MS Awareness Month, which many saw begin with Selma Blair courageously sharing her fight with the world. As is usual with the media, we all have seen more coverage this month on Basketball's "March Madness", the Jussie Smollett Hoax, the University Admissions Scandal, and liberal media Anti President Trump garbage than we have seen about MS.

Multiple sclerosis is an unpredictable, very difficult to diagnose disease, in which the progress, severity, and specific symptoms in any one person vary, and cannot be predicted. Medical experts have yet to find a cure, let alone a proper diagnostic test, and still do not know its cause, or whether it is genetic or environmental, or triggered by some other factor.

Although there are common symptoms - such as extreme, unexplainable fatigue and random, unexplainable pains, numbness in the hands/fingers (similar feeling to carpal tunnel), brain fog, strange sensations of the skin (like pins and needles, burning, pinching, water dripping, biting), feeling what's been coined an "MS Hug" where it feels like there's a boa constrictor squeezing from ribcage, around the back to the other ribcage, and problems with eyesight and balance - the symptoms vary from person to person. Some symptoms can be permanent and chronic, some may end then return again, some may remain but to a lesser degree, you never really know for sure what tomorrow will be like.

MS disrupts the flow of information within the brain, and it disrupts the flow and exchange of information between the brain and the body. In a nutshell, it is any autoimmune disorder, in which the body attacks the outer sheaths of the nerves in the Central Nervous System (called demyelination). The CNS is like the home's electrical system; the nerves are like all the individual electrical wires: the nerve sheaths are like the protective outer coating on those wires. MS is like something randomly eating away at the protective coating on those wires. You may have intermittent problems with your lights, alarm clock, appliances, you may get sparks, total failure, a fire, all in random and different parts of the house.

The diagnosis is extremely difficult to obtain, often requiring visible, measurable lesions and the visible progression of those lesions from the demyelination in the CNS. There's testing of spinal fluid too. These are more so to rule out other potential diagnoses, as there is no blood test for MS, there's no one single test that can determine if you have it.

The major problem is, many people do not show lesions that are visible, nor show signs from their spinal fluid. Many go years and even decades suffering, without diagnosis, and this, without treatment. 

One would think that with the extreme technological and medical advancements we have today, being able to transplant organs, cloning, sending objects into the far regions of our solar system, splitting atoms etc, one would think that a proper, accurate test for MS could have been developed by now. Other than a couple minor improvements, the means of diagnosis really hasn't changed a whole lot since the time standardized testing for it first came out in the mid 1960's. 

As some of you know, THH Founder, Katie, has struggled with her symptoms since she was 18, nearly half of her life. She wasn't able to get a Doctor to refer her for an MRI for the first time until about 5 years ago, and even then, it was a battle getting insurance to pay for it, as unless there's already a diagnosis, they don't want to cover it. Except one needs an MRI, for a proper diagnosis.  

Up until 2017, the diagnosis for MS actually included "Possible MS", which is what Katie was given back in 2013. Despite all of her symptoms and what all those symptoms look like over time (literally, she made a timeline), they would not give her a full MS diagnosis, as there needs to be a 2nd MRI done that shows the lesions have progressed over time - which takes time, suffering, and a 2nd MRI, let alone the astronomical cost of it. 

As a mom of two, in her mind she cannot fathom spending $4,000 to $5,000 on an MRI. To her, her kids always come first, and she feels she could never spend that large of an amount of money on herself. So, she has been trying to get a 2nd MRI since 2014 through her insurance, or as a Bono case for a hospital, but insurance will not approve it, and she has not (yet) been selected for it from a hospital.

So, she has been living with this disease for 14 years, all because the medical industry hasn't come up with a proper way to test. You have to have lesions in visible areas, a massive amount all concentrated in the same spot to create the visible lesion. For the tens of thousands if not millions out there that haven't had this precise pattern of demyelination, like Katie, they are more so treated by doctors as hypochondriacs.

As some of you know, Katie has had a recent flare up of symptoms - this is when one has a sudden onset of a symptom or symptoms, which can be new or one previously experienced. This flare up is primarily the "MS Hug" like we mentioned earlier, and severe fatigue. She has been severely narcoleptic from this, it has been quite debilitating. 

So, just because we are nearing the end of MS Awareness month, know that the need for not only Awareness is important year round, but finding a proper diagnostic test, and hopefully, a cure. 

We ask you all to keep Katie in your Healing thoughts, if only for a minute, that this current flare up subsides rapidly.  She is an extraordinarily strong woman who deeply cares for others and fulfilling her true purpose as a Spiritual Being. We are trying to keep the site going, listing new items, but Katie truly has a gift for putting countless documents, notes, records and such into eloquently written descriptions. 

We apologize for any delays in emails or shipping, all will be shipped and replied to over the course of the weekend and next week, by Katie herself. 

Thank you all so very much for being part of The Haunted Hive. We appreciate your ongoing Loyalty over the years, from our little shop on eBay to here - we are honored to have your Trust and Support. We are so very blessed!

We hope all of you have a wonderful, prosperous Spring!