2025 was no fun and I'm glad it's over! As for the diagnosis...I'll get to that in a bit.
Last time, I left off with a new plan. Better Brain and Body and EBOO. I finished treatment at BB&B and was going to PT once a week. Things were going great and so on May 13th, I went to PT and was doing so well my therapist pushed me for the whole hour. I should have stopped after 30 minutes.
I cried at the end because I had overdone it. I couldn't walk the next day or the next.....
The following week my husband went on a hunting trip for 5 days. He had breakfast, and lunches prepared and dinners completely made and everything was set out. In the past, I was able to get to the kitchen and make toast or a smoothie, etc. This time, I could barely walk.
I was so upset that I did this to myself for not knowing my limits. I cried in despair every day.
My husband came home for a few days and then went to our mountain house (we had a leak at the house a few months back, so he had to check on things. Looking back, I should have asked him to stay.
Of course, I was still not able to walk very well and cried every day in despair.
When he got home on May 30th, I was waiting in the chair by the door to the garage.
I think I'm having a heart attack. So he called 911.
Ambulance came and they did an EKG? Was taken to the ER in Pineville.
Again, an EKG was done and I was immediately taken to the Cath lab.
Turned out, I didn't have a heart attack, but a Takotsubo Cardiomyopathy event. What is that? I had never heard of that. It's also known as broken heart syndrome or heart failure from stress. I had no idea crying in despair could cause that!
Doctor said my heart would recover and was sent home on Monday.
On Thursday I was having weird, horrible heart symptoms. Again, an ambulance was called and I was taken to the ER in Charlotte.I was in Afib. Oy, that was no fun and I was admitted for several days. I was given Amiodorone and I couldn't feel my feet, it made my neuropathy worse and I felt dizzy.
I was given a bunch of different drugs that I had reactions to.
I was talked into going to a Rehab hospital and left CMC on Tuesday. What the hell was I thinking?
The Rehab hospital expected me to do THREE, 1 hour sessions of PT. I could barely stand or wall 5 feet! I noticed that I got worse an hour and a half after taking the Amiodorone and I planned to stop taking it and to go to a nursing home for easier rehab. (another mistake)
Finally got moved to the nursing home on Wednesday (a week later). This place looked very nice and had decent food, but I wanted to go home. On Friday or Saturday, they said they were going to have a meeting the following Wednesday about my treatment plan and I said I wasn't going to be there that long.
I couldn't get out of bed or the bed alarm would go off, so I had to ring for help every time I had to go to the bathroom.
On Saturday night/overnight, I called several times and no one came. It had been more than 30 minutes, so I struggled for my walker (which was put out of my reach), but I finally got it and jumped out of bed. The bed alarm went off, but I was on my way to the bathroom. The CNA finally came and was surprised that I was already in the bathroom cleaning up because I had gotten there too late.
That is the only time I've ever yelled at a CNA. I WAS ANGRY and crying.
The next day, I texted my husband and said I wanted out of there. He came as soon as he could.
I told the nurse I wanted out of there today. Some other people came in and said since it was Sunday, there was no doctor to release me and told me if I left that Medicare wouldn't pay for my whole stay if I left against medical advice. I was PISSED!
Hadn't had Afib since I left CMC, but started having Afib later that afternoon. I finally let the nurse know after about a half hour. My husband got my things ready while we waited for an ambulance.
Got to the ER and was there for about an hour or so. The doctor came in with a syringe of Metoprolol and was just about to give it to me, but my heart had returned to normal sinus rhythm and I was free to go HOME. So I went home! HAHA! I got to go home anyway. Thank you Lord for the Afib!
Then, a week later I started getting recurrent UTIs. One after the other. These were caused by the drug cholchicine. (I'm not going to explain how)
Had 8 rounds of antibiotics for UTI's from June 29th - Nov 8h. Went to a Urologist towards the end of all that and was given Premarin cream, but I didn't want to take that. Found Interlude estradiol cream on the internet, it was prescribed and I started using it. I am also taking Uqora Defend and Flush and a cranberry supplement. Urologist prescribed methanamine, but I developed horrible hip pain and worsening neuropathy in less than a week. I also use progesterone cream 20 days a month.
Thankfully, the UTIs have stopped.
More doctor visits in between the UTIs; an Electrophysiologist and a Cardiologist. When I asked the Electrophysiologist how long I'd be on the Eliquis ($546 a month), he said forever. I told him that wasn't happening. That appointment felt like him selling me on ablation, or the implantable Watchman device, as if I'd have Afib forever. I hadn't had Afib (at that point) for about a month) and believed it had been caused by the Takotsubo event. I told him the metoprolol I was making me dizzy, giving me a headache, making me itch etc.He said to keep taking it.
I took Eliquis for about a month and a half, but decided to stop taking it because it started giving me a non stop headache. From what I had read, blood thinners reduce ischemic strokes by (I think) 10%, but the same study said it INCREASES hemorrhagic stroke by 30%. I was taking Eliquis to prevent a stroke due to Afib, but I had not had Afib (at that time) for 40 days.
Later in August, I told my Electrophysiologist that I wanted off metoprolol. He said to just stop taking it, even though I had read to taper off. I started having high heart rate and some other symptoms, so I went back to 25 mg twice a day. It took me over a month and a half of cutting an 1/8th to 1/4 of a tablet off every 4 or 5 days to finally get off metoprolol. I would lower the dose when my heart rate went down.
So, needless to say I have a long list of drugs that I have bad reactions to. My Cardiologist agreed that Pharma and I don't get along.
An ultrasound of my heart in August revealed that my heart had recovered and my Ejection Fraction was 62%. A normal ejection fraction is 50% to 70%.
In September I started weekly EBOO treatments. EBOO is Extracorporeal Blood Oxygenation and Ozonation. It detoxes your blood : parasites, viruses using a filter like dialysis and then ozone is added. In 2024 Covid reactivated Epstein-Barr, so EBOO would help that.
This brings us to November, Thanksgiving, then Christmas. We got to celebrate Christmas with our daughter, son in law and grandkids. Our youngest came home from visiting her fiance's family in another state and we all had several lovely days together.
Which brings us to January. After 6 months, I had a long awaited appointment with a neuromuscular neurologist. He asked me a lot of questions, examined me and after 30 minutes, he suspected what I had and ordered a single specific genetic test for Hereditary Spastic Paraplegia. About a week later, the test came back and I do indeed have Hereditary Spastic Paraplegia, specifically HSP52. HSP explains all my symptoms; dizziness, muscle tightness and neuropathy from my toes to the middle of my chest. bladder issues, eye problems, etc.
Hereditary Spastic Paraplegia can start in childhood. Thankfully, my symptoms didn't start until I was in my 40s and it didn't start affecting my gait/walking until my late 50s. My neurologist said this disease takes two parents to carry the gene and then children have a 25% chance of getting it. I don't remember any of my relatives having neurological symptoms and none of my siblings have developed symptoms. Lucky me. HSP is a progressive disease.
I've already started looking into stem cell treatment. (from donated umbilical cord)
Every single symptom I have that I can think of:
Dizziness, Vestibular problems(eyes blurry), freezing/burning/spasticity paresthesia from tips of my toes to middle of my chest, weak legs paresthesia starting in the tips of my fingers. bladder issues, tinnitus, hearing loss. I cannot stand up without holding on to something. I tire easily and it's difficult to walk 30 feet and stand up afterwards. I use a walker at home and a power chair when I go out.
Thankfully, I had a wonderful husband who basically does EVERYTHING. Shopping, cooking, laundry, cleanup, etc. Thankfully, I still have my brain and can do things like our budget, taxes, order necessities, etc.
Thanks for stopping by,
Pam
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