Evening all, I hope everyone is well and that nobody has gotten too crispy in this weeks heat wave.
I was wondering if any of my fellow and fellowette forum members suffer from “the shakes” in their hands? This is a new phenomenom for me, noticeable only over the last few weeks or so, since a particularly difficult few weeks, work and health wise a month or so ago.
It’s not at the drink spilling stage yet, thank goodness, and doesn’t happen every day, but certainly does take place several times each week.
Take care all, stay safe, and remember to smile and be kind to yourselves.
Hi @Jimbo165 that sounds a bit scary to me and worth getting checked out medically.
Sorry I cannot help you, I hope someone might be able to.
But just to let you know that I am smiling, it’s my default mask from childhood, and I am really working on being kind to myself.
I am brilliant in telling others though.
And I am always work in progress.
Please let us know how you get on.
Stay safe, and remember to smile and be kind to yourself.
Good evening @Erica, and thank you for your kind, and prompt, response.
To be fair, it is more of a tremor than any sort of violent shake, but I will speak with the practice nurse on Monday when I have my 4th B12 jab, and see if she can “back door” me in to see a doctor.
I know exactly what you mean: I am fantastic at making sure others are okay, taking care of themselves, being a shoulder to cry on or an ear to vent in to, but absolutely useless at asking for help for myself. I blame it on a lifetime of being “the one that everybody turns to”!
When/if I am kind to myself I usually feel guilty afterwards too.
On a different subject, the nights are certainly drawing in now!
Hi there - I’m completely new to this forum & newly diagnosed with Essential thrombocythemia (ET) in June so I’m just navigating around at present. Forgive my ignorance if I click on the wrong buttons
I too get a very slight tremor in my hands. I notice because I sew a lot & it is minimal but I’m so glad to read your post because I wondered if it was a symptom
Keep well
Hi @KathyJ I responded to your other post, but just seen that you are a nurse, it must have been difficult from being the professional to being the patient?
Yes, keep well
Hi - it was difficult & a bit of knowledge is dangerous because I have a tendency to overthink things!
I’m a very positive person & have a wonderful network of support & a very loving family.
Thanks for your response
I spoke with the nurse yesterday, whilst having my 6th and final B12 injection and she said that tremors are a known but uncommon side effect from the injections and that the tremors “should” pass soon.
Time will tell.
Good evening @Lynnrobo, and everyone else too, I hope that you are all well and not getting too blown about by Storm Agnes.
Lynnrobo, the tremors have eased some, but are still there and still mildly annoying, but not quite up to the levels of Management at work!
The discomfort of the actual B12 injections was very transient and passed within minutes, without even any residual aching at the site.
Sadly I still don’t feel any benefit from the injections and am now on the programme for 1 x B12 injection every 3 months, along with my Pegasys jab every 3 weeks.
I shall be having my flu jab on Saturday as well as my next Covid jab on the 21st of October.
As always, take care everyone, stay safe, keep on smiling and be kind to yourselves.
Hi @Jimbo165 thanks for the update, I am glad that the tremors have eased a bit.
Sorry you do not feel any benefit from the B12 injections.
Glad to hear you have your Flu and Covid vaccines booked.
I’ve had mine with no reactions.
Still smiling here and being kind to myself, I hope you are too.
Good evening @Erica, and everyone else, hope you are all well and not suffering too much from the recent temperature change.
Just a brief update:
I’m still suffering slightly from the tremors, possibly slightly more noticeable as a few work colleagues have made comments about my “shaky hands” recently but, fortunately, the tremors don’t appear to be impacting on my job. I’m a driver for a Builders Merchant and operate a crane on the back of my truck.
I had my latest Covid jab on Saturday, my 6th, so I believe that I’ve “missed” one somewhere along the way. My arm has been hurting since then, but is slowly easing off now, thankfully. However, I felt so flipping (I may have cleaned that up a lot!) rough for all of Saturday night and Sunday, through to about midday today (Monday), but have now, thankfully, returned to my usual levels of poorlyness, which I am able to cope with more easily.
The next step along my Essential thrombocythemia (ET) pathway is a Face to Face appointment on the 10th of November, to which my youngest daughter (No4 of 4!) will be coming along to listen in and, no doubt, intervene on occasion too. One of the possible options that the Consultant has floated to my GP is taking a 3 to 6 month pause in my Pegasys injections to “give my body a break and chance to recover” from the 5 & 1/2 years of injections. I’m not too sure how I feel about that. Clearly I am on the injections for a reason and can see a pause being followed by a harsher/more frequent jabbing regime.
I guess that this is the sort of thing that many of my fellow travellers have gone through during their journeys.
Apologies for the ridiculously long message, despite my assertion above of a brief update, especially on a Monday!
Take care all, stay safe, be kind to yourselves and keep on smiling.
Hi @Jimbo165 thanks for your update which can be whatever length you wish.
I am glad your 4th daughter is coming with you to your appointment on 19th November, I find it always helps to have someone with me to take notes and pick up on areas to I might miss.
In your post you have quite a few symptoms to raise, perhaps stress how severe they are and the impact on your life.
Then there’s the questions to ask and the concerns you have.
Go for it and in the words of Elton ‘I’m still standing’ and smiling.
Please let us know how you get on and yes, be kind to yourself
Hi @Lynnrobo ,
My B12 is often on the low side. I take a B12 supplement daily which seems to keep it in the normal zone. I’m allergic to something in the B12 injections so I can’t have those.
Maybe ask your GP about a supplement?
Take care x
Good afternoon @Erica, and everyone else, just a brief update following today’s visit to Leicester Royal Infirmary.
My platelet count has increased by about 25% since August, so the Pegasys will be increasing from 90mcg every three weeks to 90mcg fortnightly. At the same time, she doesn’t think that the Pegasys is working fully for me either. My liver and spleen both “felt enlarged” according to both the consultant and the trainee doctor, so another ultrasound scan is being arranged. As many of my symptoms, extreme fatigue, itchiness, headaches, poor appetite, and my slightly shaky hands etc are all a concern to the consultant, I am now having another BMB done, on the 21st of this month. I’m not looking forward to that, but it is what it is. The consultant is now querying whether I am transitioning from Essential thrombocythemia (ET) to Myelofibrosis (MF). She also said, only part in jest (I hope), that I am one of her “awkward” patients who doesn’t comply with the norms of the condition!
As always, stay safe and take care everyone, and keep smiling.
@Jimbo165 guess the Colgate smile is working if the doc as a special place for you in their medical book.
Many a trip to that hospital when my dad had prostate cancer, not forgetting the basketball teams habits of picking up injuries, though that may been down to a set of nurses there at the time :).
Sorry to hear your bingo card of symptoms is nearing a full house and remember you are not awkward, you are just being a diva
Good luck on the next stage of your journey
Thanks for the update @Jimbo165 so you are definitely special and different then.
Sorry about another BMB unfortunately par for the course. Let us know how it goes on the 21st, ask for and accept all forms of pain relief is my motto. Too many years of being big and brave and a martyr.
Enjoy your weekend and keep smiling even it is through gritted teeth during the BMB. xx
Good evening @clickinhistory, and everyone else, I hope you are all okay. I think the doctor was nice to me today because my No4 daughter came along for the ride. Fortunately my daughter shares my warped sense of humour and when the trainee doctor invited me in to the small examination room and invited me to get on the bed, I asked “aren’t you supposed to take me out for a meal first”, he looked a little surprised, and my daughter, in the main consulting room, burst out laughing, as did the consultant. He did give my liver and spleen a flipping good palpation, then the consultant had a good prod around there too, to the extent that those areas are still a little tender tonight.
I well remember the many, many journeys to hospitals with my Dad when he was enduring his many, many heart attacks, back in the early to mid 80’s. Memories, it’s funny the ones that we retain.
I’m hoping that I don’t get to shout “House” at any time soon, but I shall try to refrain from being too much of a Diva. To be fair, I’m much more of a clown than a Diva!
Take care, stay safe, be kind to yourself and, as always, keep smiling, with or without sponsorship!
Good evening @Erica, and everyone else, I hope you are well. It has often been said that I am special, but not usually in a good way! Wired differently has been mentioned on more than one occasion! But I digress.
My first BMB was awful, to be honest, both the procedure and the aftermath. 2 of my daughters attended LRI with me for the procedure, and after the drilling had been completed and I left the room I became less and less mobile as the local anaesthetic had now begun to take effect. 1 daughter stayed with me whilst the other fetched my car then both assisted me in to the front passenger seat. The drive home took about 35 minutes, all of it giving the anaesthetic time to fully take hold of my lower portions, something I was unaware of until I attempted to get out of the car. Que much hilarity from my “attendants” as the top half of my body attempted to exit the car, whilst the bottom half was still awaiting the signal to move; it is a long way down from the front seat of a Freelander 2, although even I found it funny!
However the next few days were a bit of a nightmare, especially trying to change the dressing using two mirrors! I should have hired a film crew and made some money out of the spectacle.
As always, stay safe, take care, be kind to yourself and keep on smiling.
