Tag: treatment

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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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

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