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Anyone else experienced periodic episodes of paralysis? Covid related?
Post-COVID Recovery & COVID-19 | Last Active: May 21 6:09am | Replies (28)Comment receiving replies
Hello,
I had covid in December 2020 and developed long covid. I also started having what I call collapses (as described by others here) in July 2022. I was sent to the Stroke team and had a brain CT, no damage so that was that. I carried on having the episodes every few months and eventually went to see my GP again who sent me to Endocrinology - no idea why! I asked to be referred to neurology but she knew better lol. That was a no, not endocrinology but very helpful consultant. She listened and agreed it sounded similar to Hypokalaemic periodic paralysis and said she'd speak to the neurology team and refer me to someone with experience of that condition. I had the appointment a few weeks ago and the doctor was very interested. I am to have genetic testing to see if I have the genes for the condition. It was so good to have someone listen and take me seriously at last. I'll add what happens when I know :).
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Well, I had the test and don't have the gene for HPP so the neurologist said I have functional neurological disorder. I told him I didn't accept that so he said he would refer me to a colleague. I thought it would be a neurologist with knowledge of long covid. No! He actually said that Long Covid isn't neurological, I was shocked. He ran a couple more tests and said that if they came back negative then I definitely have FND. I told him I wouldn't accept that diagnosis as it's just an umbrella term when they don't know what has caused the problem. The tests were negative so he has discharged me and he can refer me to one of his colleagues for a second opinion. I have said no if I want a second opinion it won't be a colleague lol.
I have done a lot of reading and research of my own. I am going to ask my GP for a referral to a Mast Cell Activation Syndrome and POTS Specialist as between the 2 areas most of my symptoms are covered. Faints/near faints/collapses are common to both so we'll see what this brings. Sadly, it's a 6 week wait for a gp appointment so nothing in a hurry!