and it was all going so well...........

[Ovingite]

So, Monday morning arrived with bright blue skies and off I trot to to have my first annual checkup after being diagnosed with ET JAK2+ last summer. Everything was fine, with platelets continuing their downward trend (now 403) and everything else was well within recommended levels - fantastic. Then I happened to mention that I had a funny turn a couple of weeks ago that was a bit unusual, and as i described it I noticed that my hitherto jovial consultant became much more serious and her eyes were getting wider and wider. Ii got the feeling that there were alarm bells going off, but I couldn't hear them. After much questioning and testing, she said she couldn't rule out a TIA, so made me an emergency referral to a stroke clinic. Wasn't expecting that!

Shortly after I got home, the phone rang telling me to be at the stroke clinic at another hospital 20+ miles away first thing the following morning. The NHS can move VERY quickly when it needs to! Having looked up TIAs online, I realised that driving there was not wise, so train & taxi it was. After 3 hours of comprehensive questioning, testing and CT scans on head and neck I had a detailed consultation which confirmed that I had suffered a TIA, although there were no residual blockages or scarring shown on the scan. However, it may be a sign of things to come, meaning I am now more susceptible to further TIAs or full blown strokes, so the 75mg aspirin has been replaced by Clopidogrel, Lisinopril increased from 25mg to 50mg and I have been put on statins to bring cholesterol down a bit (hydroxy stays at 4500mg pw). But the immediate consequence is that I am not allowed to drive for 4 weeks from the incident, which is a real nuisance, but considering how things might have turned out I have escaped very lightly, and I am massively appreciative of the care I received from the NHS.

So on we go. A little more cautious, a little wiser, but still with many more positives than negatives in life. Off now to enjoy this glorious summer's day.......

John

[jimb7174]

Sorry to hear about your TIA John - but really lovely to read about your positivity; and I completely agree with you, we are extremely fortunate to have such awesome people working in the NHS. All the best and enjoy this fabulous weather! Jim.

[Swede]

Hi....

I am sweating just by reading your story.

As you say, some positive came out of it but I hope that was the one and only time you had to go through that.

Take care and enjoy!😎

[Mazcd Partner MPNVoice]

Hi John, wow, good job you mentioned your funny turn to the consultant. Hope you don't have any more. Best wishes, Maz

[Helpatlast]

Goodness that's quite a story John and thank goodness you mentioned all that to your consultant who was also quick on the uptake too - we are fortunate to have such good care - and you are now armed with the right meds so should be well protected - all the best

[mhos61]

Very impressive treatment!

It just goes to show that we should always mention any unusual symptoms/incidents during our consultations.

Mary x

[Ovingite in reply to mhos61]

Many thanks to all who responded. As I said, there are more positives than negatives, and this forum is certainly one of the positives.

John

[Lab-Rat]

Hi John, sorry to hear about your TIA. If you don't mind what were your symptoms during your funny turn? The reason I am asking is I too had a "spell" where I suddenly had blind spots in my vision, and then instead of the zigzag lines I normally see (I get silent migraines related to my ET Jak2+) I lost my speech for about 20 min and the side of my mouth went numb. Very scary. I was driving when it happened - it did not affect my ability to drive, I could understand speech but I could not speak, I did not know what the word for example for Wednesday was etc. At first I considered the sudden aphasia a new manifestation of my silent/visual migraines. After some weeks I started having doubts and thought perhaps it was a TIA. So went to the GP, he said TIA, and referred me for a MRI. MRI was normal. Oncologist called me in and after listening to my symptoms said he does not agree that it was a TIA, but rather it was silent migraine related and if aphasia manifests again I should see a neurologist. My platelets are currently at 500 (Pegasys 45 mcg every 3 weeks).

[Ovingite in reply to Lab-Rat]

Hi Yvette,

My symptoms also started whilst I was driving, but thankfully very near home. It started with disorientation and light headedness combined with my usual fatigue symptoms (feels like someone is pushing down on my shoulders & crushing). The began to lose coordination and unable to form words. I knew what I wanted to say but had to concentrate very hard to get words out. Similarly when eating I had difficulty moving my left arm to use the fork - I knew what I needed to do but took a lot of effort to do it. After a couple of hours I was back to near normal.

The stroke consultant said there was no sign of stroke damage on the CT scan, but given my ET condition, age (68) etc he was confident it was TIA. I had no limb weakness or the classic mouth dropping on one side.

I guess we all respond in different ways. I hope you get your condition sorted soon

John

[katiewalsh in reply to Lab-Rat]

Hi. I had a “suspected” TIA but no sign of it on MRI. My doc said they don’t always show up on a MRI. My symptoms weren’t as pronounced though. At the time, I had no prior history of blood clots. Just another episode pre-diagnosis. I hope they figure out what it is. But I think you should ask your doc if it’s safe for you to drive when like that. Best of luck. Katie

[Ovingite in reply to katiewalsh]

Thanks Katie. The neurologist has already told me that I cannot drive for 4 weeks from the date of the TIA.

John

[lizzziep]

Good job you mentioned it! Hope all goes well for you!

Lizzie

[Wyebird]

You’ve had a lucky excape although at the time it’s devastating.

I suffered a stroke when I was 50. Off work and unable to drive for 6 months.

Made almost a full recovery.

My worst fear is having one that leaves me disabled and with loss of dignity.

Wishing you well

[Ovingite in reply to Wyebird]

Thanks Wyebird, and sorry to hear that you had a stroke, but it's encouraging to hear that you have made a good recovery. Like you, my biggest fear is that a full stroke might leave me disabled. Just being off the road for 1 week has been a real shock to the system as I am the main driver of the household, and I just cannot imagine how we would cope over a longer period (we live in a village with no shops and 2-3 buses per day), but if push comes to shove I'm sure we will find a way.

It's strange the way things turn out. When I was 'accidentally' diagnosed with ET, one year ago almost to the day, I had no symptoms at all and thought ET wasn't such a big deal. Since then the fatigue, bone ache, dizziness has set in and now the TIA has made me realise that ET really does have teeth and has to be taken very seriously. I hate to think where I might be if I hadn't had that chance diagnosis and had carried merrily on, but luck has been on my side - let's hope she stays with us all

Take care

John

[Wyebird in reply to Ovingite]

Hi John, can you give me symptoms of your bone ache please. I’m convinced I suffer with it too but my symptoms when described to my blood nurse don’t fit.

All I can say is I ache as if I’ve completed a workout and used many muscles that have laid dormant.

[Ovingite in reply to Wyebird]

Hi Wyebird,

I only get it in my left thigh- never anywhere else - and it is invariably preceded by a numbness that often spreads to my lower leg. I call it 'bone pain' but I cannot be certain where it emanates from. It feels as if it is located very deep in / under my thigh and is a dull, gnawing ache similar to toothache. It comes in phases, but often after I have been sitting for a while - particularly when driving long distances.

I find that raising my leg whilst sitting eases the symptoms, as does moving about more. I have been prescribed codeine for the pain - I'm too old for ibuprofen and paracetamol isn't strong enough - which eases it a bit, but I am vary wary of becoming dependent upon it so only take it as a last resort.

Hope that helps

John

[Wyebird in reply to Ovingite]

Thank you John, yes I think you are describing what my blood nurse said. I wish you well.

[Ovingite in reply to Wyebird]

Hi Wyebird,

Just had a fairly long phone consultation with a member of the Hemo team and discussed numbness / leg pain. He was of the opinion that it is highly unlikely to be be caused by a blood disorder and suggested that I discuss it with my GP, which I will do in a couple of weeks time. If anything comes of it I will let you know

John

[Wyebird]

Well John you are not going to believe this. Since April I’ve been doing exercises for tendonitis of my Achilles heel. Although the heel is still giving me a lot of pain my leg muscles no longer do. Apparently the Achilles’ tendon is attached to your calf muscles. My Physio and I now wonder if the aching was connected.

[Ovingite in reply to Wyebird]

That's great news - and very interesting. A few years ago (in my pre-ET life) I had a problem with pain in my foot, which my daughter diagnosed as tendonitis related to the Achilles tendon. She told me to stand with the ball of my feet on the edge of the stair and the heel unsupported, and then gradually lower the heel to stretch the tendon. You can really feel it pulling! Within a fairly short time the problem was gone. I still use this exercise if I get calf cramp, which I think is all linked.

Unfortunately my leg ache nowadays is mainly in the thigh, so I don't think it will help with that, but it does make me wonder if there are other tendons in the thigh that might cause the aching. I think it's time to have another chat with my daughter (she's a doc)

Take care

John

[Wyebird in reply to Ovingite]

That’s the exact exercise I’ve been doing since April!! I also ice my ankle wear a support, sleep with my leg on a pillow, wear a small heel and given up Yoga and walking. A scan confirmed the Physio’s diagnosis but all agree that an injection is a last resort as failure causes lots of problems. I’ve now been to seen a knee specialist as I think my limp has resulted in a cyst forming behind the knee.

Good news I think anagrelide combined with hydroxicarbomide is working. Haveing a doctor for a daughter must make you very proud. It’s also convenient to be able to get advice from.