Saturday, February 28, 2015

Day 6 - Spending The Weekend

Platelet count has not gone up in fact it had gone up and now it went down a bit. Going to stay in hospital until Monday and hopefully get last infusion. Requires a platelet count of at least 100.  I'm at 83.  Wonder if a bowl of spinach helps platelets?  I think that's red cells not platelets but oh well.

Day 6 - Waiting

Waiting for info on the last blood test. And wondering if it might not be a good idea to stay in hospital anyway because Sara has a cold. Me with no immune system her with cold probably not good. I have to go home sooner or later. I need to get the last dose.  Dilemma dilemma dilemma.

Day 6 - Good News?

The doctors came by and the results from last nights blood test were positive. Platelet count going in right direction. Rash still a little worrisome but not too bad. One more blood test and a decision to discharge me so I can go home today at five (hopefully).

One scruffy dirty smelly patient.  With a red blotchy neck and chest.

Day 6 - STILL IN THE HOSPITAL - before sunrise!

Not where I expected to be but still the right place to be.  Rash still there this morning though, interestingly, it does not itch.  I actually feel better than I have for the past days, which makes sense as no infusion yesterday, but am still moving very slow.

It will be interesting to see what the doctors say today.  I strongly suspect that I could be staying on here till Monday.   Blood test in 30 minutes will tell the story on platelets.  Not sure about judgements on the rash but it looks really bad!

Friday, February 27, 2015

Day 5

Slept pretty well buk woke feeling even weaker and more tired than yesterday.  It is expected that my symptoms will actually be worse for a while.....and......they really are.   Hands tingling, arms weak, and legs wobbly.

Got the news that I had been dreading!  Platelet count is low.  Not critically but the concern is that it continues to drop.  Soooooo.  I have to stay tonight, check bloods tomorrow, maybe go home if they have rebounded. Or. May have to stay.  In any case goal is to have final day of treatment on Monday.

Not what I wanted to hear.

And now...a rash!   Not completely unexpected but not wanted either!  This is, however, why they wanted me in the hospital tonight rather than at home.

Day 5 - Hopefully Last Day - Sunrise

Thursday, February 26, 2015

Day 4

The bright red bag is a bit worrisome as I am the only person with one!  Three hours to go on second to last treatment.  All going well so far.I keep a close eye on the kettle but it boils no faster
It finally boiled! One more day and I can go home.

For the next three or four weeks I am expected to still feel bad and then we hope for some improvement"....

Day 4 - Sunrise

Grey English morning...

YouTube Video

Wednesday, February 25, 2015

Day 3

Another day of treatment given that bloodwork and vital signs all still ok.  Did not feel the initial rush of the drug so I guess that is something.  Doctor was worried because he felt that I was a little 'pink' for my morning checkup.  But as vitals were all ok we went ahead.

Tomorrow no steroid drip so some side effects are possible.   Have been tired all day but finally got a shower.  Heat and MS not being the best of bedfellows always make a shower interesting.  Feel better though.

Had best meal of stay tonite as I finally found the asian section of the menu.  Chicken Biryiani <sp>.  Certainly not great but much better than the western choices.  Asian menu again tomorrow.

Day 2 - Sunset at the Hospital

The lights go down outside and come on inside.

Tuesday, February 24, 2015

Day 2

Consultant neurologist came by for a chat today. He indicated that if I felt bad this week it would be at the end of the week as the steroids come off. Expect an itchy rash.

First month after treatment going to be rough as immune system will have been compromised. Sara and I have some plans that will likely need to be modified.

Finally, he indicated that following the first month is when I might see some impact. Positive impact I mean!

Do feel better today as the stress of getting here, checked in, and on the first treatment really was killer yesterday.

- Posted using BlogPress from my iPad

Monday, February 23, 2015

Room for Week in London Courtesy of the NHS

There is a view of the city to the right but not so hot as it faces north.  People on the south side get a view of the Thames but no such luck here!

Day 1

Stress and MS don't mix. I felt bad all day and after treatment even worse. Treatment for first three days starts with the steroid and followed by the active drug. Active drug is packaged in a big red bag what does this indicate? Fact that it's a poison!  I definitely feel it as the drip started a little bit of nausea and then just yucky.  I've taken the antinausea pills the give and that seemed to help.

No complaints about the care as everybody's attentive though the staff is very busy. Monday seems to be a particularly bad day with all the check-in.

Food however sets the tone for institutional. Just plain institutional!

Sunday, February 22, 2015


First symptoms manifested themselves during the early to 90’s in the form of a visual disturbance in the right eye.   Would get worse with exercise or heat and better when drinking a cold beverage.   Optical neuritis and possible MS finally diagnosed, after much non-diagnosis, finally in 2000.
At some point in these early years my hearing in my right ear was also compromised with symptoms being difficulty hearing across background noise.   Hearing test confirmed that hearing itself was fine but that getting it to the brain and translated was not working.   During these early years Dr. Genut confirmed his initial finding re MS supported by observation, MRIs, and a spinal tap.
First motor symptom occurred in 2002 with right ankle becoming weak and walking with a pronounced limp.   This passed within a week or two but difficulty walking for extended periods started to develop during the following years.  
Initially treated with Avonex but moved to Copaxone primary for the easier administration.   I just could not do the needle into the muscle.   Copaxone is administered into the skin with a device that makes it easy.
Symptoms continued to progress slowly though more motor function was being lost and endurance walking became further compromised.   Periods of visual disturbance seemed to be increasing, or tolerance lowering, tingling in right hand noticed.  I also recently started taking Ampyra which does help with walking and also seems to help with other symptoms.
In August of 2012 I moved to the UK with my English wife (a long term planned move).   Since I have been here I feel as if my symptom worsening has accelerated.   In particular, I am finding it measurably more difficult to walk a course that I try to do daily (couple hundred yards outside our house).   In addition right eye visual disturbance has become almost constant.   Tingling in right hand is now constant and left is intermittent.   Balance over the past month has also been significantly compromised.
It has become time to try something more drastic.