Tag: multiple sclerosis

Day 2

Day 2

I think i fell asleep about 2am. The screamer chatted til 12.45am but then i had obs at 1am so couldn’t settle again.

I woke up a couple of times and have been wide awake since 5.10am.

Coupled with the 20 minutes of sleep Sunday, i think its safe to say I’m probably a bit tired.

I’m having to have regular obs as the Lemtrada can affect my heart rhythm (so far so good) and the steroids can affect my blood sugar. I tested at 15.5 and 14.9 yesterday. The higher one was just after i ate and the 2nd one 2 hours later, but i had had a packet of crisps and a chocolate bar inbetween as the steroids make me HUNGRY

The chest tightness from yesterday was relieved with my inhaler easily enough. I also got very achy like i did back in the early days of my symptoms and i felt a burning itchy sensation but no rash as yet.

Lets see what today’s dose will bring

To be continued…

The steroids are still vile as is the taste they leave

Very few other symptoms, other than insomnia…

Love, Little Miss PMA xxx

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Day 1 of Lemtrada

Today i arrived at the hospital half an hour early. I didnt sleep a wink last night.

I was shown my bed, I’m in a ward of 4. I was last woman in. We have a screamer, a lovely lady who weeps a bit and the lady next to me is quite poorly and struggles to speak.

I’m the only 1 with MS. I’ve had bloods taken, swabs taken and pee’d in a cup.

Nothing of note happened until about 2pm.

I’ve had IV steroids (left a vile taste in my mouth), and I’m finally on the Lemtrada.

Its the stuff in that bright red bag. The stuff that can’t see light. The stuff that looks like it could kill ya. Yeah. Even the nurse described it as a toxic medication

I’m waiting on paracetamol and an antihistamine as ill spike a temperature and ill get an itchy rash.

My drip needs a new battery pack and i think my chest is feeling a bit tight.

I’ve been on the bloody thing less than 30mins and I’ve got a tight bloody chest.

What fun.

I’ve watched a lot of TV and I’m now watching The Meg.

Love, Little Miss PMA xxx

A date with L

A date with L

My appointment with the MS consultant was actually today, not tomorrow, thank god i checked my diary…

I’m going to be treated with the Lemtrada, the drug that sounds horrific.

It could stabilise me for up to 12 years though.

I will be able to try getting pregnant again in a couple of years.

I’ll likely start treatment in November/December as i have a trip to Seville booked early November.

The drug will essentially wipe out my immune system, ill need lots of post treatment meds, antibiotics and anti virals for example, for a fair while after the 5 day stint in hospital.

Ill be very fatigued during and for a few weeks after the treatment as it’ll break down my T and B cells, and all the chemicals from inside the cells will enter my blood stream

I will be able to have my 4 weekly blood tests locally which is a small bonus.

I can still have an alcoholic drink, but not too much before blood tests as it’ll mess with my enzyme levels.

Ill probably need another MRI before commencing treatment and have to keep my Dr up to date with any relapses.

So, there it is. Next 4 years of my life planned out, probably a rubbish Christmas, at risk of picking up everything due to a suppressed immune system. Excellent.

Been advised to avoid forums, won’t be an issue as i just want to deal with what comes, as it comes.

Going to be difficult, but when is life easy?

At least i can enjoy Cyprus and Seville and theres a plan in place, and i do like a plan!!!

Oh, and i need to stop vaping before the treatment!! #myonlyvice

Love, Little Miss PMA xxx

Hand forced?

Hand forced?

So i had a call on Thursday from my GP, he told me he had had a letter from my MS doctor and i wasn’t to have steroids during an MS flare up.

Fair enough.

Today i got a copy of that letter and its terrified me.

I’d contacted the secretary of the MS doctor to advise we would like another baby so he asked me to come in this week (Thursday). In the mean time he wrote to my GP to say

  • I have relapsing remitting MS
  • Its rapidly evolving severe
  • My MRI’s showed that between 2015 and April 2018 there was a significant increase in lesions
  • Between April 2018 and June 2018 there were THREE MORE lesions (explains all the symptoms i was having)
  • As i was considering another baby, he wants to try a different medication, Lemtrada, as it provides a long lasting effect and will hopefully prevent relapses during pregnancy

Lemtrada does not sound pleasant, at all

The long term effect on disability is uncertain

Its given by drip over 5 consecutive days and i HAVE to be admitted to hospital as nearly everyone has an allergic reaction, treated by antihistamines and IV steroids

I’d need a second 3 day course in a year.

1 in 3 people develop under or over active thyroid requiring lifelong treatment

1 in 100 develop a blood condition

There have been a few cases of people developing a kidney disorder too

These conditions can be life threatening so I’d need blood tests every 4 weeks for FOUR YEARS after completion of the infusion

But, its PROBABLY safe to get pregnant 4 months after the last infusion. Probably.

What the fuck am i meant to do with that??

Head is up my arse.

I refuse to Google.

Love, Little Miss PMA xxx

Reconciliation

Reconciliation

How do you reconcile being broody versus having MS?

How do you know its not just jealousy? There have been a fair few pregnancy announcements of late.

How do you know when the time is right to try again?

My head’s a mess. I really do want another baby. Sensible me thinks i should wait, my heart doesn’t think it can take it.

If i start MS meds, i have to be med free for a year before doing IVF again.

The longing for another pregnancy and baby is overwhelming at the moment. The idea of waiting another 18 months at least, scares me, the thought of feeling like this for that time is miserable.

I worry i won’t manage with 2, practical stuff i can sort, but the idea of Little T fighting with his sibling scares me.

I worry Little T will be jealous, but i worry he will be lonely.

Its a complete head fcuk.

My main problem is lack of information. I don’t know if i should start meds and then have a break and then IVF, or whether its easier to try again sooner rather than later, then start meds after a potential pregnancy.

I don’t want to waste anyone’s time, the NHS or my consultant (who is sourcing my medication). The problem is, I’m not seeing my consultant again until after we have been to Cyprus, which would be a prime opportunity to do FET (frozen embryo transfer)

Doesn’t help that my body is being weird, namely longer periods and random aches in the uterus area. I think its all in my head to be honest but its just messing with me.

Why does this have to be so hard?!!!!

I’m so back and forth

Love, Little Miss PMA xxx

Cruising

Cruising

Little T is developing so quickly at the moment. He’s now starting to hold the furniture and cruise about. He doesnt stand independently yet but we are not far off.

He also said his first word ‘Cat’. Every time he sees one, regardless of whether its ours, someone else’s or a picture, he says it.

He can also say ‘Daddy’ now too, although he says ‘Cat’ more. He says it all dam day to be honest. He shouted it so much at lunch time the other day, the cat actually came downstairs!!!

He is teething too, molars apparently, and its hard work. He isn’t sleeping before 10pm, and for 2 nights we’ve had to drive to get him down. I was out til 1.30am one night.

That has coincided with me suffering major fatigue. I wake up exhausted and am exhausted all day. Its an MS symptom so hopefully it won’t last, in fact i have felt better today, but during the spell, my patience wore thin and i found Little T’s whining very hard to cope with. Pretty sure i said ‘f**k me, what now’ under my breath about a hundred times over the last few days!

I felt like a terrible parent, ill be honest. I usually find him so easy to cope with, but i wasnt managing. The late nights and early starts and the fatigue, were just too much.

Im glad to say today was easier though.

Little T looking very tired!!!

Having said all that, I’m almost 100% certain i want another baby. Not now, but in a couple of years, I’m not sure its doable as I’ve no idea what the side effects of the MS drugs will be. I’m loathe to read up on it as, to be honest, i don’t wanna know. I’ll deal with it when it happens. At least i can tell my MS doctor in September that another baby is on the cards, unless the side effects make that impossible/unfair to another baby and Little T.

I had my repeat MRI, this time with dye, not so long ago. I had a strange experience during it. It felt like i was rocking back and forth, so much so, i had to check with the technician that i wasn’t, after the scan. My fingers also went numb/tingly, but that happens quite a lot at the moment, so I’m probably experiencing an episode. Pins and needles i can deal with, so long as i don’t start slurring again!

Ive a GP appointment next week as i need to take vitamin D to up my levels, so that’ll be 4 medications a month im taking. Thank you NHS for doing pre paid prescription certificates, they will save me a fortune!!

Im counting the weeks to our Cyprus holiday (8.5 weeks). Im so excited to show off Little T, I’ve had a romper made especially for the visit to our clinic…

Made by https://www.facebook.com/babsandmoo/

I’m looking forward to sun, relaxation (thanks to my Mum and brother coming) and walking around Kyrenia again. I love the place, and it’ll be nice to be able to enjoy the pool, and alcohol, for the entire holiday, as no IVF will be taking place!

Love, Little Miss PMA xxx

And now we know…

And now we know…

Today i had my appointment with the specialist MS doctor.

After much discussion of symptoms, and a few physical tests, it was decided i do have MS but dont present in a traditional way. Most people get worse through pregnancy as the immune system is lowered, whereas i am symptomless in pregnancy. My symptoms very much come and go, which the Dr thinks seems to indicaye my issues seem to resolve themselves after a period of time.

Im to go back in 3 months, i had blood tests today to check im compatible with one of the four drugs suggested for future treatment, and ill have another MRI before seeing the doctor again. He also wants me to have high dose steroids to tide me over whilst an MDT (multidisciplinary team meeting) is carried out to decide the best course of treatment.

Im happy its MS. I was dreading them saying they didnt know what it is, and having to start again.

Its obvious there are more inflammation spots on my brain since the MRI 5 years ago.

That i can manage.

But! The drugs arent ideal if i want to get pregnant again. I’d need to stop treatment for 12m before trying again. Plus, is it even fair? Do i put all my energy into being healthy for the one i have, or risk my health for a possible sibling?

My head says, stick with one and be the best you can be, but my heart is gutted. I’d like a sibling in time, but can i justify it? Will i be well enough to have 2? Will the break from meds make me experience more and more extensive symptoms

Its hit me harder than i thought tbh, i don’t know what to do with myself. I wanna run away but also know I’m so lucky to have my friends/family and son.

I just feel a bit meh.

Love, Little Miss PMA xxx

Nearly there

Nearly there

Since January, I’ve been on a mission to lose weight. The BMI calculator told me i was obese so it had to be done. I set my target as the top end of healthy and I’m pleased to say I’ve reached it. And a bit more!!!

Just 12lbs to lose to my ideal weight, which is 1.5st heavier than i was when i got pregnant with Little T.

I’ve not been following a diet as such, just sticking to around 1200 calories a day and as we’ve had such good weather, I’ve been pushing the pram a lot!!! I’d like to hit my target by September, so I’m not rushing the loss or at risk of putting it back on.

We are still a no on doing IVF in September, i really am enjoying Little T too much, but I’m pretty certain i want another in a couple of years so will renew the embryo freezing.

I started smoking again. Ugh. It started with one or two a week when the idea i may have MS came up, but quickly progressed to 20+ a day again. On Tuesday i bought a vape, something i never thought I’d do, and it seems to be helping, i am on the highest nicotine dose, but plan to reduce each time i buy more liquid. Fingers crossed!

My MS appointment is tomorrow. I’m anxious the Dr will say its not MS and ill be back to square one, I’m also anxious about how any medication will interfere with any potential future pregnancies. Lots of worries and questions to ask.

Today was Fathers Day, we took Mr Me for an amazing steak lunch and Little T got him a T-shirt and card.

Little T continues to delight us. He crawls as fast as a bullet out of a gun, is extremely well behaved, has mastered the ‘downward dog’ pose and his laugh is infectious. He loves chasing the cat, and loves us chasing him.

I love watching him, i just sit with a grin on my face, watching him eat, play with his toys, play with others. I absolutely adore him. Plus, he’s gorgeous. I just can’t believe how lucky i am to be his Mummy.

He is super close to talking too. He can say ‘uh-oh’ and ‘daddy’ with prompts. He understands SO much. His sleeping pattern is erratic at the moment, which usually coincides with a new skill so I’m thinking more words are coming, as he doesn’t seem overly keen on standing/walking!!

Love, Little Miss PMA xxx

And so it begins…

And so it begins…

The desperation. The hoping i won’t come on. The praying we get lucky.

Already! We don’t cycle til September and I’m already obsessed.

Ugh! This is what IVF does. It seeps into every corner of your life. Makes you crazy. Makes you feel inadequate.

Roll on September and i hope we get a BFP as i will not be cycling again. We plan to defrost all the embryos so there is no second attempt at a sibling. IVF has been part of our lives for 7 years and we NEED to move on.

I know its the right thing to do. I know I’m so lucky to have Little T. I also know ill be devastated if it doesn’t work. So between now and then, i need to prepare myself, so I’m not broken if it doesn’t work.

In the mean time, there’s the MS diagnosis to contend with. I’ve got many symptoms going on. It started with a numb tongue for 10 days. 2 weeks later my right side went numb for about 3 weeks.

Its progressed to:

  • Lack of control in right arm and leg
  • Fine motor skills encumbered, can’t butter toast, put a key in the lock, stir a cup of tea etcetera.
  • Slurred speech
  • Fatigue
  • Balance affected

I’ve had a brain scan via MRI and I’m awaiting an appointment with a specialist. The symptoms seem to get worse with each ‘episode’ they progress quicker and last longer. I’ve had enough.

To top it all of off, my GP wants to review my anti depressants with a view to reducing them.

The appointment is next week and I’m anxious and scared. I’m not ready and i plan to tell him this and fight to stay on my current dose.

So, there’s a lot going on and I’m having some down days. I can’t even have a glass of wine as i can’t handle it, probably due to my rubbish brain, i just get stupidly drunk and make a fool of myself!

Love, Little Miss PMA xxx

PS sorry about the i’s M 😉