Test day

[Spanelmad]

Had the last of the tests that Guys requested today.So far the spleen ,liver ,and kidneys all normal size!! (I had been told they were enlarged in the original consult).So good news.Plus I'm now 2.5 stone down on the weight management.

Today was bmb day.Started bad the lifts were out of order,yikes 4 floors of stairs. Along wait as they were very short staffed.

Then we had 2 goes at getting a sample, which meant I had a full dose of lidocaine (they used 2 sites)so when I eventually got up my right leg barely held up .The S1 nerve damage is well and truly irritated.I'm assuming it's from the position I was in .luckily the next doc managed to get the samples, apparently they needed bigger needles.But it took well over an hour.Here's hoping Its not repeated any time soon.

Results of bloods and marrow end of august.

Here's hoping the nerve starts to behave soon.

[lizzziep]

Good luck for the results 🤞

[Spanelmad in reply to lizzziep]

I'm just hoping the spine and sciatic nerve settle down.walking this morning the leg is still out.As for results no point worrying ,I'll deal with whatever comes!

Hope your well and not too hot and bothered

[lizzziep in reply to Spanelmad]

I’m ok, thank you. Well, as I’ll ever be anyway! I’m keeping out of the sun, too hot for our dogs too. The elderly one is staying near the fan, the young one has to be dragged in out of the sun or she’d just lay there and burn. 😁

[Spanelmad in reply to lizzziep]

Percy went and stayed with my local dog walker last night as I stayed at my sisters last night ,to break the journey. He hasn't rested at all apparently but has had a good time playing with all the dogs .

[PhysAssist in reply to Spanelmad]

No to put too fine a point on it [bad pun, I know]

ICE, ICE Baby!!!

Then make sure you get up and walk around every 2 hours to keep things moving.

God bless and best wishes for speedy [nerve] recovery!

PA

[Spanelmad in reply to PhysAssist]

The only problem is it's so hot here it's melting quickly.

[Micky1956 in reply to lizzziep]

Hi I had my BMB early in July, and like you the procedural nurse had to go back in as she never got enough of a sample.Like you I would not like a repeat of this, but without putting anyone off, or scaring the pants of everyone. It is the only way they can personalise your treatment package, so just try to grin and bare it.

My results have shown that I am suffering from ET, which at the moment is responding to the hydroxy and keeping my levels in check.

I have though developed a peculiar feeling in my chest, like my heart is racing and I can almost feel it beating at times. I have never suffered with any form of blood pressure or AF. I have had a ECG on recommendation of my consultant, but that came back normal?

I will wait until my referral is completed and will discuss with Guys if this could be connected with, either MPN or the hyroxy.

But apart from all this😲 I feel fine. I just have to learn to keep my eyes open after about 3 o'clock in the afternoon after my daily dose.💊💊😁

[Spanelmad in reply to Micky1956]

That 3 o'clock feeling gets me nearly every time!!!

[Inca]

The same happened to me last summer 3 B M Bs to get enough out of my skinny rear end to test! Took me ages to sit without discomfort,the nurses gave me pads to ease the situation! Worry not the discomfort passes eventually.For me it confirmed M F after 12 yrs of P V.Not a happy result ,hope yours is ok .Best to you.🙃

[Spanelmad in reply to Inca]

It's a known problem for me due to the degenerative spine so I was aware that the position they get you in would aggravate it.It was the comment from.the nurse of" is that normal"when the leg collapsed.The sciatic nerve was just firing with every step yesterday, today is a lot better .

[Inca in reply to Spanelmad]

Pleased to read you are much better,I do understand the pain of sciatica having endured it for many years.Having just one B M B freaks out most people more than that we need a bravery medal not to cry out !😱

[Spanelmad in reply to Inca]

I thought it was very similar pain to the spinal nerve blocks I had.

[Spanelmad in reply to Inca]

Hope you doing ok too

[Lyndjs]

Hi Spanelmad ,

Sounds like a tough day, I hope your results make you smile, after everything you went through. Please keep us updated, waiting us the hardest part now.

Really hope it's good news.

Lynd x

[Spanelmad in reply to Lyndjs]

The BMB it self was ok! It was the nerve giving Chinese burns down the right thigh,while the needle was going in that was the problem.

[Lyndjs in reply to Spanelmad]

Sounds incredibly painful. I hope everything settles down soon xx

[Spanelmad in reply to Lyndjs]

It didn't help that everything was running late,I hadn't eaten since breakfast at 5 ,so Id held off some medication as I need to.take it with food.Guys phoned late yesterday to check how I was,and it's improving all the time.I'm taking the full wack of pain meds plus using an ice pack.

[Lyndjs in reply to Spanelmad]

A very long day too. Great to hear it's improving. How lovely Guys called to check with you too.

Lx

[Spanelmad in reply to Lyndjs]

Yes I can't fault them, through the unit was running 5 members of staff short they were all amazing.

[Lyndjs in reply to Spanelmad]

I've heard they are awesome. My haematologist said he's consulting with Guys, on my treatment.

So good to hear you're being looked after. I'll be watching for your update.

Lx

[hunter5582]

Glad you got through the procedure. Wishing a speedy recovery and positive news with the outcome.

[Spanelmad in reply to hunter5582]

Thankyou, awaiting the results with anticipation!! The whole procedure was very interesting ,and I was shown the slides that they prepared ,and the actual bone marrow.

[RedCardRob]

Drop of rain (literally) last night, at least is now cooler early doors. That was a toughy, hope you have an easier recovery and some decent results.

My BMB was carried out my two first timers. Not sure what they used to deaden the site but I don't think it was enough. To cap it all they missed on the first go!Twas like sitting on a golf ball for weeks after... sweetened by the results👍

[Spanelmad]

No rain here!!yes Hunter had warned that you needed someone experienced!! I think that may have been my problem too, as the next practitioner went in much further up the hip.Good news this morning managed to walk the dog without the nerve travelling further than the thigh so it's much better.