I had a call from my consultant today. He says that my haemoglobin levels are just a bit lower than they’re happy with for me to start on Kesimpta just yet (we went through some questions about if I’d been ill or had any infections lately. He says it could be caused by one of my antiseizure medications so, we’re making a change then, testing me gain in a while. A delay is a pain in the bum but, he’s a good chap and, it’s reassuring to know that I’m being monitored 
We’ll be there soon enough 
Take care all x
Jon.
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I am sorry that it’s still being a slow process - it must feel like you’re competing in a slow bicycle race. 
As you say, you’ll get there. I hope that it doesn’t take too long.
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Thank you Alison.
Yes, it does a bit but, I’m in the system and, things are moving. I’ve learned to be patient through all this and, it’s not like I can catch MS while I’m waiting 
Plus, I get to see my nice MS nurse in a couple of weeks and, the weather is good outside now.
I hope you’re keeping well x
Jon.
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Hoping the change works out well and your haemoglobin levels are where they need to be ready for your next checks so you can get started!
Glad to hear you have a good team that is taking all the care needed!
Sending positive thoughts your way!!
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Thank you all for the replies and support - much appreciated
I got the consultants letter today. It’s my Imunoglobulin levels that are too low for me to start the DMT just yet. He says it could be caused by my original antiseizure medication so, we’re going to work that one down and, the new one up a bit quicker. Then it’ll be another blood test and a PET scan to see what’s going on
I hope you’re all getting this good weather x
Jon.
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Hope things go well switching over to the new medication!!
Did they give you dates for the next tests? I can imagine the wait is frustrating however it’s good to know you are in good hands being monitored and they won’t rush anything if it isn’t right for you currently.
The weather is nice but heres hoping it doesn’t get too much nicer… the garden loves the 30c summers but I am not a fan hah 
Hope you’ve had a good weekend!!
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Thank you
No dates just yet. Haemotology have said that I’ll hear from them in 3-5 days. My consultant has requested the PET scan and, I’m seeing my MS nurse again in 3 weeks. She’s great at sharing info so, I may learn a bit more then 
The weekend has been pretty good. I’ve been out and about and, I ate far too many Jaffa cakes
I hope you’ve had a good one
Take care BB x
Jon.
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Fingers crossed you can learn more when you see your MS nurse and you hear back quickly for dates. I’m sure these things can’t be rushed but its nice to have a date in the calendar isn’t it!
Also, jaffa cakes are a solid choice 
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Well, that moved along quicker than I expected - my consultant does like to get things going. I’ve got the blood test at 1:30pm on Wednesday and the PET scan at 4:30pm tomorrow
I’ll have to get more Jaffa cakes in at this rate
Take care BB x
Jon.
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Hi Jon,
I’ve just seen your post and wondered how your were getting on with switching your epilepsy meds and then more blood tests?
Hope you’re Ok mate.
Alison
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Hi Alison.
They seem to be going ok. Thank you - I’m still reducing the Levetiracetam and increasing the Lamotrigine at the moment. There’s been no news on the latest blood tests or PET. scan yet - I was hoping to hear about that in my appointment with the MS nurse tomorrow but, that’s been moved to 6th July now. Maybe a letter will turn up in the week.
I hope you’ve been doing ok in the warm weather lately.
Take care mate x
Jon.
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Hi Jon
Sorry to hear your appointment has been moved.
We were away last week in the warm weather and the hotel had air conditioning thank god! I struggled in the heat if we were outside at lunchtime but learned not to go out in it towards the end of the week! 
How were you with the hot weather?
A
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Hi Alison. Thank you
It’s ok. Well,I suppose it’s a pain in the bum really but, I’ve learned to be patient and live with these things through all of this so far plus, the new appointment isn’t too far away really
I hope you had a nice time away x
This weather has been great for me. It’s the cold temperatures that bother me now.
I managed to get quite a bit done in the garden a week or 2 ago - I did get a bit dizzy at 1 point but, I seemed fine again after a nice cuppa 
I hope you’ve been keeping well x
Jon.
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I hope that dizziness hasn’t come back Jon. Cuppa and a biscuit (the biscuit is very important 
) often helps 
I’m glad you enjoyed the warm weather x
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Hi Alison.
I’m all out of Jaffa cakes for now unfortunately so, I’ve been having a little rum &raisin fudge this evening with a few walnuts- it’s a hard life but I’m sure I’ll manage
The dizziness hasn’t been back but, a seizure caught me out last night - my vision went a bit skewiff and my left side arm and leg kept shaking and wouldn’t do what I wanted them to. My partner sent her notes to my MS nurse today (they get on great which is nice) the nurse has told me to stay on the current dose of Levetiracetam while increasing the Lamotrigine for now. She’ll discuss it with the consultant in a couple of days.
I hope you’ve been keeping well and managing to dodge all that rain lately x
Jon.
Hi Jon,
I hope you’ve been seizure free since that last one you mentioned. You made me smile with the Jaffa cake substitutes!
I have a recipe for home made hob nobs that I haven’t done in a while - I must make some more
I hope the most recent medication adjustments are helping.
A
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Hi Alison.
Yes, seizure free for a bit now, Thank you x that’s probably a mixture of the medication and me slowing down and behaving.
It’ll be interesting to discuss it with my MS nurse in a couple of weeks
Your biscuits sound great - warm homemade baking never lasts long in this house.
I never was very good at baking but, my niece’s love my onion Bhajis so, I’m making some of those and a Biryani for them and my brother for father’s day
It looks like the warm weather is on it’s way back so, take it steady x
Jon.
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Your bhajis sound amazing Jon!
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