Further to my previous posts I attended hospital on my appointment yesterday at the T.I.A. clinic and had a very intensive consultation with the doctor who after questioning me thoroughly said he felt almost sure the symptoms I had experienced were Migraine and that over the years they can change. However, he said to make sure he would arrange for an M.R.I. scan if I wanted to wait and have it while there to which I was pleased to agree. I didn’t have too long to wait and after scan he saw me again and showed me the scan result on screen. He said he could see no evidence of any bleeds and all looked normal but we would receive the official Radiologist’s report when ready. He did point out tiny dots ( capillaries) which were slightly worn in an area in the middle each side, but nothing of worry. I would think at 88 this is normal. He is also going to send a letter to my Haematologist in same hospital regarding any migraine connection with E.T. JAK 2.
I would like to thank very much all of you lovely people for your response to my post. I’ll write again when Radiographers report is to hand. Probably 2 to 3 weeks. Regards to all! Fran
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azaelea
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Glad to hear that you had a positive result regarding any TIAs or strokes. I think you are right about the anomalies noted being age normal. I get regular MRIs of the brain due to the brain tumor that was removed. The MRIs often note age-normal ischemic changes in the brain. It is just part of an aging brain.
The hematologist should follow up regarding the migraines/headaches. These are a known MPN symptom. Perhaps a referral to a heachache specialist if that doc is not sure how to manage the issue.
Reassuring on one hand, very reassuring! But that leaves you with migraines which are, forgive the pun, such a pain! Two years ago I had MRI scan which showed something they weren’t happy with so a CT scan to look further, and they declared it as an acceptable anomaly and similar to you the diagnosis was - it’s just migraine. Since having the groupings of migraines, I call them cluster, I’m supposed to be going back to neurology for checks and scans.
On one hand I’ll be happy if there proves to be nothing , but on the other hand ….. migraines! They can be so randomly debilitating as well as extremely painful.
Can’t thank you enough for sharing your journey Fran, please do keep us up to date. I’m following it intensely. Hoping for the most amount of relief possible for you.
I had increasingly frequent migraine auras in the two years before I was diagnosed with ET Jak2. I used to have migraine headaches as a teenager and into my twenties. For the recent auras, the GP prescribed a low dose (10mg) propranolol to take when needed. It got rid of them completely. Everyone is different, so it may not be relevant to anyone else. I also don't know whether the mpn medication would also have stopped them. So why post this? It might help with a new idea for someone.
I've had headaches/migraines pretty much daily since 2000 which corresponds to when my ET kicked in. Platelets have pretty much been hovering in the upper 600,000's for 24 years so my treatment has been two aspirin a day which I feel extremely fortunate about.
Numerous Neurology appointments and pretty much trying every treatment under the sun didn't do much for me or caused a separate side effect- I just learned to adapt to the migraines and my family understood that I may disappear to a dark room for a bit.
Finally, the Veterans Administration allowed me to take Qulipta and that has cut the frequency back quite a bit. It's part of a new class of migraine meds (-gepants) and there's one called Ubrelvy that is supposed to be more of an abortive rather than the preventative that I'm on now. You might want to look into them. I want to say I experience a little more dizziness than normal but nothing debilitating.
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Just another update
Feeling low and fed up
From ET diagnosis to uncertainty !
