Help Beth McNulty Battle Mitochondrial Disease
5/15/19: Today I start making appointments for some 'new' tests for a different direction in my "health journey' that may or may not have to do with the lesion and tumor - i'm not sure. We don't really understand where we are heading but the new Nuero is looking at something that none of the other three have mentioned EVER and it makes more sense - and when we have more definitive information I will put it out there but for now I do not want to cause undo alarm. It's not a direction we expected, its not the end of the world - information is key right - we can work with this.
Thank you to everyone who has donated - we really appreciate your help. Especially now more than ever.
I do want to take a second to pat myself on the back - today is the day I donated my Right Kidney Bean back in 2012 to a charming young man who is kind, funny, sweet and made the cutest little girl ever. And I'd give him the other one if i could. Check the box on your license - be a donor and for Pete's sake if you know someone that needs an organ - liver, kidney, marrow - step up and see if you're a match.
*updated* Beth has always worked two jobs - however - in early December 2018 one of the attorneys at the lawfirm she worked at told her "if you're having seizures I can't have you here"... two weeks later she was let go - the Friday before Christmas. She was not told why. She was told only that she had 5 minutes to gather her things and leave and and never come back. She rarely ever took a sick day even with the diagnosis of a brain tumor and lesion, which causes her to have severe vertigo and balance issues, seizures, headaches and fatigue....
In 2012 she even donated one of her kidneys to someone who needed it! To hear her say it, "it was the right thing to do. And, I had an extra one anyway." She's always one to make people laugh. Beth also co-hosts a monthly open-mic called Nerdy By Nature at Amalgam Comics in Philadelphia.
She has been battling migraines since age six and was diagnosed with epilepsy a few years ago. Now she is facing a recent diagnosis of a CORTICAL DYSPLASIA LESION and a LOW GRADE GLIOMA (brain tumor). Which was actually discovered in 2014 on an MRI taken when she had a stroke. However it was not disclosed to her until June 2018 when she began having serious issues. Someone dropped the ball big time!
I really can't see a better option than to rely on the generosity of the many people who's lives she's touched to help her gain the hope she so desperately needs and deserves.
At this point she has been using a cane to walk since November. She has dementia like symptoms more often but she still has more of a "good day" than not so that is what we hang onto. The right side of her body is weak and her hand tremors which is also starting to happen in her right leg. She cannot hold a cup, and her right hand remains closed and is painful to open so we bought a small toy football for her to hold to keep it open.
SHe is incredibly effected by sound - too many "noise sources" are very confusing for her and can be overwhelming and even physically painful - she says it makes her ears burn - which also triggers seizures (before a seizure she usually touches her ears and face and that's how I know she's about to have an issue). She also gets very confused at these tmes and often has trouble finding her words or remember the conversation she is in. I think this may be part of why she stays in alot.
Her body cannot produce the energy it needs as fast as it is being used. Some days she cannot even move to reach for something because her body just wont cooperate and she is exhausted but when she CAN do something even if it is for a short time she does.
She cannot eat many solid foods at this point because she cannot digest them well (Gastroparesis) and chewing physically makes her Jaw tired.
We focus on key nutrients like Magnesium, Vitamin D, Iodine and B to keep her energy levels up. Her medications are on a schedule - Thyroid, Seizure, Migraine, and the foods we make sure she has every day are Avocado, Mango, Banana, Chicken and FlaxSeed.
In June she had and EEG and ENG, in July she had another w/wo contrast so her Nuero can compare with all the other scans dating back to 2014 when they discovered the tumor and lesion (but forgot to tell her about) but ALSO discover her Gastroparesis, and Thyroid Disease - 3 effected Organ systems = Mitochondrial Disease) - but 5 years later here we are...
The ENG was a very painful test of electrical conduction done in two parts - the first was topical electrode shocking her muscles and the second was long needles that shocked her muscles once they were inserted - I had to leave the room - it was like watching her be tortured for two hours.
This disease is robbing her and us. It's painful for her to have and painful for us to watch her go through knowing nothing can be done. Alot of people seem to be google doctors which is very frustrating - we know what we are dealing with because WE are dealing with it although we do appreciate the well intended suggestions of trying this or that or maybe its "just..." we finally have a have a very educated team of medical professionals that are experts in their field.
Beth thought she had unemployment funds until December and in May was tricked into signing a release not to sue her former employer for an ADA claim in exchange for them not to contest it. and her last payment was in June. She has applied for disability but in the meantime we could really use some healp.