Hello..ello...llo...lo..o

Hello everyone,
I have not been posting anything since 17th September and today its 3rd December.. o_O.
I have been very busy with University and coursework and lab and everything.
I was symptom free till last week. So from July till end of November!!.. yay..

I started a sore throat two weeks ago and I had a flue jab last week. Then I was under constant pressure for 2 weeks to submit a major coursework and I can feel it taking an effect one me. :'(

I have

• 24/7 pain/burning pain in left leg, from my hit to toe in patches
• achy neck
• slight double vision
• fatigue
• trouble concentrating

Rebif Update.

I started Rebif on February this year, and guess what my 12th Delivery is in a week.. :-O

I need to get my nurse to re-prescribe the injections for future.

No more flu-like symptoms, but I still take paracetamols

I have MS Nurse appointment tomorrow for a regular blood test because I take Rebif.

Remember me in you Prayers.

Back to Uni

Hello..
Sorry I haven't been posting for a while. I was just focusing on me.
I have been going to couselling for the past two months and then driving lessons and then calorie counting.
Today I go back to University again after taking the year off because of the relapse and then the diagnosis.
I am very scared because NEW YEAR, NEW STUDENTS, NEW EVERYTHING.
My cousellor have been trying to help me to stop being so paranoid and treating everything as a possible trigger for a relapse. But i am just abt 1/100 of the way there. Its too hard.
Please remember me in your prayers. I hope I can continue going to University and not take leave again.
I will let you all know how it goes. :-)

Heavy hands

Like when I had the first relapse in October 2013.. I am having a relapse where my symptoms are escalating quickly. Within an hour, I cant really lift my left hand up. It feels like a tonne..

I will not be able to post for a while. Bye.

:-*... :'(.

Its a beautiful day, but I am not well

It is definitely a relapse

I feel so horrible..

everything below neck is numb, I can still feel and stuff, but its weird.

My fingers are so numb and very bad muscle spasm. I do not know how to get rid of it, I am still new to all this.. :(

Symptoms:

• Its really hard to type, as I cannot feel the keys sometimes
• I drop things constantly
• Showering is a task!
• No appetite
• Forgetting words that are so common
• Losing balance sometimes
• Under left foot there a stabbing pain when walking
• Under right foot it feels round, so a bit off balance now
• Going to toilet quite often
• FATIGUE

I am going to e-mail my MS Nurse and ask her if I should go an see her or go to GP.

The reason I think I have a relapse now is because of a few reasons:

1. On 8th June, we had a party at out house, hosted by my parents for about 40 people. We had caterers and there was a lot of food left over, so we shoved the food in containers and put it in our fridge, so I guess the temperature varied in our fridge. For the next few days, the fridge temp was like 9-13 degree Celsius. All this time, my medication is inside the fridge. So maybe this week I was injecting myself with gone off Rebif.
2. I had flu with 37.9 degree Celsius on Wednesday and I was ill since Tuesday. So maybe the increase in core temp caused the relapse.
3. I have been stressed for a few days now, with my parents and brother. So I shouted a lot, Cried a lot, and been generally upset, so that caused the relapse.
4. Or, its a relapse, face it. Pray to God. Keep Faith.

Numb hands, body and mind

So basically two days ago..(13/06/2013), I woke up with a fever. I checked my temperature and it was 37.9 C or 100.3 F.

I was feeling so warm and nauseated.

So basically my body temperature shot up and it was the day after my injection. So injection's flu-like symptoms and actual flu symptoms..

I was able to manage it all with like 4 paracetamols and the flu went away.

But since yesterday, my hands started to become numb again, it hurts when I type. By the evening, my whole body is felling that "clothes-sliding-around" feeling again.. oh boy, I HATE IT..

I woke up today and it is at its worst.. everywhere it got that feeling. down to my toes.

also under my foot, it feels like there is something there. and it is poking me.

*SOB*..

Dear Lord, Please help me..

Driving lessons

I went for my first ever driving lesson on 10/06/2013.

It was fun, apart from the fact that I freaked out a couple of times and hit the brake suddently and got the car into a kerb.

Nothing majorly horrible happened. after three trials, I drove the car smoothly and parked it, according to the instructor "perfectly parked".. (tap on the shoulder).

There was a constant worry in my head that something bad is going to happen, like a seizure, or a numbness or something.

When I got home, I was so tired and my whole body felt like vibrating from the inside out. Maybe it was all the adraneline from driving for the first time.

Anyways, I cannot wait for the next lesson.

¥

Cheer up.. hehe

Rebif ® reactions are back

So basically I said a few weeks ago that I don't have side effects afters the injections. It was just for a week, unfortunately. All the three injections were from one cartridge of medicine. And it was the same week I had a relapse. So I havr many questions!!.

- Why didnt it work?
- Did the medicine go bad?
- Does the medicine have no effect during a relapse
- Why do I still have sideeffects from the injection? I have taken abt 40 injections so far.

Ok.. thats it.. TOODLES!. :-*

Weightloss

So for a few years I have beentrying to lose weight.. didnt really work.. for the past few months i have been  counting my calories.

I can announce that I have lost a total of 9.7 kgs or 21.38 lbs .. I am not going to say from what weight.. :-P but my goal weight is 70kg.. hopefully I will reach that soon..

It is quite hard now that I have MS.. I am scared to go to gym.. I used to go to gym before I gt diagnosed.

Hopefully I will lose the kilos throught counting calories and some moderate excercises.

Insomnia is a B*tch

Its 5:13 am and I am still awake.. i have heart pain and back pain and everything..

I dont think I will be able to sleep anymore..

Sleepness nights

So.. its 3:12 am.. and I am still not asleep. I have been in my bed simce last night 11 pm.. but I just cannot sleep..

I am so disturbed.. My arms are acheing, my back is feeling stiff, so ai can only lay on my back and not turn or be in my comfortable position, I feel sick, I see nightmare when I close my eyes.. I can hear my Dad snoring from my parents room.. etc etc..

I just went downstairs to take two paracetamols and apply some gel to my back and neck.. now I am back in bed. I still cannot sleep. I have to wake up at 8 to go to church as well..

I am trying to recite the rosary, but my back is causing distraction..

I hate insomnia.. :'(

Hands are numb again.. :'(

So basically since last week (after I mowed the lawn), my hands have been slightly numb, but no pins and needles.

Last night I was sleeping in constricted spacr and I woke up today with my hands a lot more numb and it is painful to touch them.

Also the "clothes-sliding-around" is also back.

Why is this happening even if I am regularly having Rebif® injections.

The nurse did say that it is not supposed to stop relapses completely, but to reduce the amount of symptoms that I will face.

Also I go back to Uni again on September (2013).

I am placing my trust in Jesus. Only God can help me.

Saint Lucy - Patron Saint of Eye Sight

Hello everyone, As you all know, I had Optic Neuritis and I lost complete vision in my left eye on September 2012. I have been praying to Saint Lucy for the healing of my eyes.

I prayed to her everyday and I got my vision back. I am very grateful to her and I want to share the prayer with anyone who have a problem with their eyes.

Saint Lucy,
Whose beautiful name signifies light, 
By the light of Faith which God bestowed upon you,
Increase and preserve his light in my soul,
So that I may avoid evil,
Be zealous in the performance of good works,
And abhor nothing so much as the blindness and the darkness of evil and sin.

Obtain for me, by your intercession with God,
Perfect vision for my bodily eyes
And the grace to use them for God’s greater honor and glory
and the salvation of souls.

St. Lucy, Virgin and martyr,
Hear my prayers and obtain my petitions.
Amen.

Out in the Sun

So today I decided to mow the lawn, and it was 19C out.

I asked my Dad and Brother to do it, but they said they cannot be bothered. So I did it

Surprise Surprise, now my hands are numb and my back is tight and my Knee hurts.

So i guess my "core body temperature" raised.

Does this mean I can never workout?..

Oh and by the way, I collected my glasses yesterday, and I love it.. I can see clearly again now.. after living as a half blind for months, I am happy again..

I dedicate everything to Saint Lucy.

Rebif 44mcg Update

Hello...

I am back..

So I have had fourteen 44 mcg injections so far and I have to say that I am pretty happy now.

To my surprise, its not as bad as the 22 mcg dose. But I do have the same side effects, but I just take 2 paracetamols before I go to bed and I wake up feeling normal.

I had my one month blood test on 27th March and the MS Nurse said she will call me if anything is wrong. I still haven't heard from her, so I thinks all is well.

I had my eye tested again on the same day (if u all read the older post about my eye test and the start of optic neuritis, u will understand this better) and my prescription changed and I went back there again last week and ordered glasses. Its coming on 22nd April..YAY.

If any of you have any questions about taking Rebif. Just e-mail me.. :)

Rebif 22mcg update

Hi everyone..

I haven't been posting for a while..

Well have been on 22mcg dose since 6th March and OMG... what a change from 8.8 mcg.. Some days I felt like I was going to die.

That's how dramatic the side effects were.. I usually take the injections after 9.30 pm.. I just had the last of the 22 mcg dose, but the side effects only start at about 4 am next day..

So I take 2 500mg paracetamol before I go to bed.

The main side effects that I can remember.

• Tingling all over my arm
• goosebumps
• shivering like i have hypothermia
• hallucinations (yh.. its true.. i thought i was getting attacked by snakes almost on all of the injection day)
• fatigue
• excruciating eye pain on the day after
• really bad fatigue

From 20th March (day after tomorrow) I start the 44 mcg.. AAARRRGGGHHH.. I am scared..!!!

I will let you know soon.. OK?..

Bye..

Rebismart

Hi.. I haven't been posting for a while..

I started my Rebif on 21st Feb 2012. So far I had 3 injections. Its just 8.8 mcg.. after one week its 22 mcg.. then 44 mcg for ever!!

I am already used to it now. I did not even hurt when I injected myself. And not being able to see the needle helps. I had really bad side effects on the first injection. Flu like symptoms, body pain, toes tingling etc. Now I am fine.

The whole unit can be kept in the fridge ( i was shocked, coz I am studying engineering, and I have never heard that you can keep machines working on normal batteries can be refrigerated)

Individual holidays and family giving me stress!!

So you probably read in About Me that I am from Kerala (South of India).

I have some family left back there (I don't talk to my Dad's family..long story) and because we are abroad we go on holiday to meet them. The last time I went was on 2007. (Yeah, it's been a long time).

There is a personal reason that I don't go. My Parents and Brother go there almost every year, but I stay in London. (everyone go by themselves)

It was the first and last time, we ever went as a family, since we moved to England in 2005. and it didn't end well. And I don't want another trip like that.

So my Dad is going again on Tuesday, by himself of course. And before he go, he always create a fight in the family. and he don't talk to anyone when he leaves. I figured out why he does this after observing his trips by himself twice a year for a about 5 years.

If he fight with us, we will not call him or he will call us, so we will not know what he is up to. And I heard from people that he does some things really bad. and my Mum is aware of it as well. So it's not a secret!

My family is just giving me a lot of stress and I don't think they realise how much it is affecting me, especially when I have MS!.

Bupa Home Care Service Welcome Pack

So, today I received the Rebif Kit, it was like Christmas.. lol

The delivery man came with a 10kg box and handed it to me.. then after like 15 mins he came back and said that he forgot to give me the actual medications..

I have put them in the fridge, and still waiting for the nurse to call me.

There's a lot of things in it..

 Serofine needles
3 sharps bin
Screwdriver
10 hour cool bag
Heat pack
MS help guide
MS Rebif passport
RebiSmart Automatic Injection Machine
Shoulder Bag
Spare lithium batteries
Ice packs
Calender/ Injection Tracker
A CD on injection and the treatment

Bupa Delivery Date

So I e-mailed my MS nurse many times, because I didn't hear about my Injections arriving.

She called Bupa and made them speed up the delivery.

Yesterday (6/2/2013), I got a call from Bupa and they said they will deliver the Medications on Friday (8/2/2013)... Yay...

But today (7/2/2013), they called me again and said that they will have to reschedule the delivery to Monday (11/2/2013)... :-(

And also the Community Nurse haven't called me yet to fix a date to have my first injection..

BTW, today was one of my best friend's Bday, so I went to hang out with my friends from Uni.. I went back to Uni after like 4 months and Memories!!....huh..

It was so fun, had lunch at TGIFriday.. And there was a lot of surprises today..hehe

YAY.. My Blog link on mattsms.com

Hi all..


Basically, the main reason I decided to start a MS blog is because of the videos and blog of Matt (www.mattsms.com). I was inspired to write again on a blog that I started a few years back to display my sketches, but now its to share my MS experiences.

Today I saw in his website that my website is displayed under his "Links".. I am so Happy.

Nausea from ketone (alright now)

So I started taking the ketone yesterday and it was one of the worst days in my life (but nothing will beat the MS relapses)..

I was so nauseated. I couldn't even lift my head up. I was in my bed most of the day, but I pulled through. Today I took them again and about 3 Kalms tablets (so stressed due to family problems). I was alright, but I slept for about 2 hours like I was dead, and apparently my mum and dad tried to wake me up and I didn't respond.

I think I will continue taking the ketone. I guess the nausea was due to my body not being used to them.

Raspberry Ketones..

Today I started to take Raspberry ketones to lose some weight. I do not know if it works or if it is safe for me, as I have MS. I took one each before breakfast and lunch today. I feel like something is stuck in my throat and it is not a nice feeling. I feel so sick, and I am so thirty. I will tell you how it goes. OK?

Snow.

My right pinky has lost sensation... again..

I posted that my right hand is really painful.

Basically since yesterday, my right pinky finger has lost the sensation completely (If run super cold water or super hot water, nothing). But it hurts when I touch the finger. That's weird right? Also it's curled slightly.

Yesterday I took the rosary out of my neck and left it in my room before taking a shower (I have never taken the rosary out, except for MRI and EEG). Then I forgot to put it back.

I woke up at like 4.46 am and my body was feeling so weird, I thought I was going to die.

Then I fell asleep again and woke up and my right side of abdomen feels like what I had on 13/10/2012.. "clothing sliding around".. I am wearing the rosary now and I hope God helps me.

Also I read that the pinky and half of the ring finger can lose its sensation when a nerve is compressed in the elbow (Ulnar nerve) so, I was trying the sleep without bending my arm, which is really hard to do. Even if I go to the Doctor, they will just say it's MS..MS..MS..MS..

Like people with MS cannot have any other problems.

Anyways I called the Surgery and I have an appointment with my GP at 9.20 am tomorrow.

Tremors ... :'(

My eyes are better... yay..

Well not completely, but back to what it was after my first ON episode. but I am happy..

But tremors are back.. :(

If you have read my post on "Getting Worse, Last day of Uni for me" you will remember that I couldn't take lecture notes of anything.. So I am back to that now!!.. My right hand has been in pain for more than a week now. It just hurts a lot.

Since yesterday, my fingers have started to curl up again and I have no sensation there whatsoever. No cold, no hot, nothing. It is very hard to do anything.

I have stopped painting again. If the tremor continues, I will have to stop cooking soon too. So, I am gonna call the GP on Monday and get an appointment. Hopefully he will give me some beta-blockers or something. Also I have to start seeing the dietitian again.

BTW, its been snowing since Thursday. Not a lot, just a few centimeters. I will post some pics soon... :)

Another Quarrel (Family)

I love gift boxes, especially the ones that they come in with bows and glitter. I always keep them and keep them safe. Yesterday, I took about 15 of them and went to my brother and showed it to him, then left it on his table top.

Today when I came back from the MS nurse appointment, my mum told me that my dad binned all of my gift boxes and the waste collection was in the morning.

I busted out and I was so angry at them for doing it and I was stressed and cried a lot.

If you have MS, you will probably understand about this uncontrollable emotions. It was just not like me. My dad got so angry and said a lot of hurtful things.

After a few hours, my mum came to me and whispered to me, "don't worry, I took them out of the bin and they are safe".

OMG, I was even more angry at that, she could have said atleast a word before I started screaming.

Then I realised, my dad ordered in online about 100 gift boxes and they cost about £50 (See below).

Now, my dad is not talking to me either.

So thanks my "supportive" family for giving me even more stress.

 

MS nurse appointment

The appointment was due at 9 am, but I got there after 9.10 am, my parents took so long to get ready.

Well I got there and the Nurse said that it is in fact a relapse, but not severe, so I don't need to have another course of steroids, coz I had them just 3 months back, and if my symptoms get worse, I will be given steroids.

She said, I will have to wait a few more weeks for DMDs to get delivered.

Something under foot

I went to eye unit to show my eyes and the doctor told me it could be a Optic Neuritis relapse. So, I have to contact my neuro ASAP...

I went for grocery shopping with my parents and I came home. Then I started feeling something under my left foot sole.. It is very painful and I cannot walk.

Time to bring the crutches out..:(     

The eye doctor also said that I might have to have another course of steroids...:(

Waiting for DMDs

Since I was diagnosed in October, I was told by my neuro that I need to start my DMDs ASAP..

I had to start seeing an MS Nurse, and I only got to see her in thr first week of December. She said it will take a few weeks.

I called her a day before Christmas and she said it can take at least 6 more weeks.

I feel like my steroid injections are wearing off. Coz my eyes are weird again amd my left side is numb and have slight pins amd needles

So, its been 10-11 weeks since I have been waiting and I am scared about having another relapse..

Please pray for me..

Symptoms I had so far.. 7 Jan 2013

Here's a List of Symptoms I had so far since March 2012

March 2012

• Right leg weakness (near paralysed)

June 2012 

• Migraine
• Seizure

August 2012

• Optic Neuritis (Lost 100% vision in Left eye for about 3 months within a week)

September 2012

• Altered skin sensation - cold when hot and hot when cold

October 2012

• Pins and needles
• Numbness 
• Constipation (for a week)
• Urinary retention
• Tongue numbness and taste disturbance (metallic and blood taste all the time)
• Numb teeth
• Numb lips
• Lack of appetite
• Under feet feels like round, so no balance
• Hard to walk
• Dry skin feeling in abdomen - clothes feels like they are sliding around
• No pain even when poked (I got burned with hot oil and didn't realise it)
• Tight back (it was the worst one) 
• Couldn't get up from bed - feeling sooo heavy!
• No hand eye coordination (I couldn't touch my nose with eyes closed or tell where I am touched without seeing)
• MS hug - up till heart line
• Behavioural changes - temper, happy, angry, stress, anxiety
• Memory Loss
• Lack of concentration

January 2013

• Double Vision
• Blurred Vision

Pain is back

Yesterday night my back was feeling a bit tight.. today it was gone.. but my altered sensation thing is back...

Whenever something cold touch the left side of my body, It is very painful like it is burning. So it was hard to shower as the shower curtain is so cold and it kept on touching me... :'(

My eyes are so bad... I cannot see clearly now, I would say my eye without Optic Neuritis is better than the one affected...:(.. It got definite double vision in my right eye

I am thinking of going to the Eye Casualty tomorrow and I called my MS nurse and she told me she want to see me on Wednesday (09/01/2013)

Eye co-ordination

My eyes have a lot of trouble focusing on anything and have double vision.. I have discovered that my eyes are not coordinating together...:(...

I feel like its going to be another relapse and I have no news about when I might be getting my Rebif..

Eye Update

My eyes are still bad.. My left eye just got near recovered from the first Optic Neuritis attack.. Now it could be back again.

My right eye was already short-sighted, now its even worse.. I have double vision and cannot see properly... It is so hard to focus on anything..

Eyes are troubling me again

Today I woke up with a heavy feeling in both my eyes.. this was how my first symptoms of optic neuritis was... I hope nothing will be wrong...:)

Happy new Year

I had a party last night... I got home at about 3 am.. it was a New Year party.. So I got to watch the London Fireworks from their house... It was A-M-A-Z-I-N-G...

London did goooood