• Maria APG

TTP Side Effects

It's been over a year and a half since I was diagnosed with TTP, but it's lingering effects on my body surface every day. They are a constant reminder of the damage TTP has caused.

Since July of 2019, just before I was diagnosed with TTP, I've had facial paralysis on the left side of my face that comes and goes. During PEX (plasma exchange) treatments, the feeling in my face returned and although it returned on and off even after the treatments stopped, it's never gone away completely.

I've been complaining of loss of balance, numbness to the left side of my face, sharp pain behind my left ear and swelling of the head around the same area. After several MRI's and CT scans showed no abnormality per say, neurologist was at a loss. I was told that I had to accept the possibility that my current brain condition would not improve, that my body was under a lot of stress during my episode with TTP and that this state of mind may be permanent.

Wrong thing to say to me. It's not in my character to sit down and take this information without questioning it. Especially because of all the issues involving my brain since TTP became part of my life in 2019. Because TTP is such a rare blood disorder, doctors are at a loss to explain some or all of my symptoms.

So, for the last four days I've had a headache that is comparable to Chernobyl exploding in my brain. Usually Tylenol takes most of the discomfort away and leaves a headache behind that I can manage with meditation. The last four days were different though. I was experiencing vision problems, my balance was noticeably off and I was feeling nauseous. Called the favourite man in my life these days, my GP, and relayed my symptoms. He sends me to the hospital for a CT scan in case it's a brain haemorrhage or a stroke .

Since I was not near my local hospital, I went to a smaller hospital I had never been to before for testing. It also happens to be the only hospital in this area without a COVID-19 outbreak at this time. It was a convenient choice that paid off in a big way.

After a twenty minute drive we arrive at the hospital, I check in to emergency and fully expect to wait hours to be called. This was not the case. In less than an hour I was seeing a doctor, having a CT scan done, already had CBW done and all my vitals had been checked. Impressive, I thought.

The doctor, who couldn't have been more than 28 years old, explains what he believes is wrong with me. Everything he was explaining about Bell Palsy made so much sense because I had been experiencing all the symptoms and it was such a relief to hear someone speak to me the way he did, with a solution.

The saying "can't see the forest for the trees" is aptly applicable here when describing what I've been through with the paralysis on my face and testing in the last year and a half. While specialists tried to figure out what was happening to me, suspecting TTP, here comes a doctor, out of nowhere, who put meaning into what I was experiencing. In all fairness to the specialists, every time I saw any of them, my head was not swollen and the paralysis was not present. I saw them after an episode, not during.

Bell Palsy, from what I've read and understood the emergency doctor say to me, is a diagnoses given when nothing else can be found to explain the symptoms. However, everything he described about the condition is happening with me. It also makes a lot of sense considering my brain was deprived of oxygen rich blood for however long I had TTP before I was diagnosed. My best guess is about 2 months of a lack of proper blood flow to my brain before I was hospitalised and given plasma exchange. Also, because I was in and out of a coma, the additional trauma to my brain could have caused my face muscles to stop communicating with my brain. It all makes sense, as far as being diagnosed with Bell Palsy, but is it the right diagnoses?

I have two days to decide whether or not I want to take the anti viral medication before the emergency doctor calls back. Today I'm speaking with my GP, who, by the way, is my hero. Without his quick diagnosis of TTP, I would not be alive today, so when he speaks, I listen and follow his recommendations to the letter. He even makes house calls. Unheard of in this day and age. Even my prescriptions are delivered to my door, and he returns my calls almost immediately. He's simply the best general practitioner, ever.

So, in about an hour GP is going to call and whatever he recommends I do, is what I'll be going ahead with. The question remains, will my stomach be able to handle the anti viral medication being prescribed by the emergency doctor? Will it help my face from drooping, if that stage ever comes? We'll soon find out.

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