MS Questions #2

I also asked Dr Kipp the following;

The progression of MS is described as unique and different for every MS sufferer; almost random. Yet there seems to be a set group of symptoms MS patients suffer from, and, a set group of symptoms MS sufferers don't suffer from. Does MS affect specific areas of the brain?

His answer [again] was a qualified yes. MS does seem to affect certain areas of the brain more than others, however you can probably find a MS patient with lesions in any particular area of the brain.

I also asked;

Lesions show up in MRI's as grey, so as I age will subsequent MRI's show a 'greying' brain, as lesions appear  randomly throughout my brain?

His answer [was a kind of scary] no. New lesions may appear, but generally the current lesions will show up darker and darker as cells die.


[my summation] So, it appears MS has an affinity for certain areas of the brain, and continues to attack those areas throughout the course of the disease.

The cause of the disease is like a glutton at a buffet. It will eat anything, but prefers the dessert tray.

MS Questions

Actually, the best part of the last MS checkup was getting some questions that have puzzled me since day one cleared up.

MS is always described as a disease in which the insulating myelin covers of nerve cells are damaged. Yet, the main diagnostic tool used is an MRI of the brain. I asked Dr. Kipp the following questions:

Are nerve cells and brain cells the same?
Do all nerve cells have myelin sheaths?
Do you get sclerosis on nerve cells throughout the body?

His answer was a qualified no, nerve cells and brain cells are not the same. I my words, it would seem there is a sliding scale of change. Most [but not all] nerve cells outside the brain and spinal cord do not have myelin sheaths, and consequently do not get lesions.

The name multiple sclerosis refers to scars (sclerae—better known as plaques or lesions) in particular in the white matter of the brain and spinal cord. [from wikipedia]

So I asked, is describing MS as a nerve cell de-myelining disease a misnomer? Should it not be described as a brain cell de-myelining disease?
His answer was again qualified; a qualified yes. Yes, it is a more a brain cell de-myelining disease, except it also affects cells in the brain stem and spinal cord, [where the brain attaches??].

Because MS affects cells in the brain, the blood brain barrier [BBB] becomes significant. [my question]Is MS a result of a failure or compromise of the BBB?

Annual MS checkup

I went for my annual MS checkup last Monday.  My neurologist is Dr. Virgina Devonshire, but I mainly saw a new Doctor, Dr. Kipp. He is a young new neurologist who 'may' join the UBC MS Clinic. In the mean time, however, in general conversation [and because I'm nosy] he told me he was going to London, England, for about a year, to get more training. I hope he comes back to the UBC MS clinic, I liked him.

So, the check up. Basically the MS is slowly advancing, I'm getting marginally weaker, and life goes on. We will keep doing the copaxone and hope for the best.

Ya, well, I saw Dr. Patricia Mills on that Tuesday back in April. She was 'politely interested' in my research idea but not too encouraging. Any kind of research is expensive and requires backers with deep pockets she said.

Guess I'll need to figure out how to raise some money.

I see my MS Dr., next week.

I have an appointment with the UBC MS Psychiatrist, Dr. Patricia Mills on Tuesday. She is the one who referred me to G.F. Strong, so we will probably review how that is going.

Dr. Mills "...is a clinician-researcher with a focus on autonomic function...". I gather that  means the involuntary nervous system.

She's a researcher so I'm going ask her if she heard of Harvard University professor Takao Hensch's claim that valproate, an epilepsy pill, can help adults achieve perfect pitch. The theory is it reverts the capacity for learning to that of a seven year old. [Read more at http://www.nme.com/news/various-artists/74816#XHalffxeDXSZv18s.99]

I'm going to suggest she [or someone at GF Strong] do a study to see if valproate helps or enhances someone with a brain injury or disease [like ms] re learn lost balance and motor skills. It will be interesting to see what she says.

Daily Injections of copaxone continue. Injections everywhere except the stomach feel like little bee stings. But, aside from that there is no irritation. No noticeable change either, but that is to be expected.

I am continuing to go to GF Strong twice weekly. Now I'm [sort of] trying to walk in parallel bars. I'm not quite to the point where I could try out for a part in Dawn of the Dead. But, I do feel stronger.

Yesterday and today, Irene did my Copaxone injections in the right and left buttocks. Both times they felt like bee stings. Not really bad bee stings, but just enough to be annoying. The feeling lasted about a half hour.

So, what is my condition like?

I can't really walk at all by myself. With a cane and help I can go about twenty steps.
I can stand myself without assistance for about two minutes.
With my cane I can stand for about three minutes.
I can do about ten sit to stands from my wheelchair [with cushion] in the bathroom.
I can stand on my right leg, but cannot lift it up.
I am not using a walker, I get around in a wheelchair
my right foot is swollen [and ugly] and I often wear a compression sock.
My feet, especially my right, are numb
My  feet, especially my right, are cold
I can only move my index finger on my right hand
I can only do the start of an arm curl with my right arm
I can only move my right arm by shifting my shoulder

As far as I can tell, my cognitive function and memory are still as good as ever.

So, generally, going backwards from now for a year or two, this is what has happened to/with me in regards to MS.

02/26/2014     -     first copaxone injection
12/15/2013     -     appt. with Dr. Devonshire neurologist, UBC MS Clinic. prescribes copaxone
09/15/2013     -     started to go numb from the waist down
08/13/2013     -     followup appt. with Dr. Mills
07/01/2013     -     started to go to GF Strong
06/15/2013     -     followup appt. with Dr. Devonshire neurologist, UBC MS Clinic
02/05/2013     -     appt. with Dr. Mills physiatrist
01/15/2013     -     steroids treatment; doesn't seem to do anything.
12/15/2012     -      appt. with Dr. Devonshire neurologist, UBC MS Clinic. suggests try  steroids.
12/01/2012     -     getting a little better. get around home in wheelchair
11/15/2012     -     major ‘attack’. can't get out of bed myself, can't get on the toilet myself, can't walk. It doesn't go away.
03/15/2012     -     can't get out of bed myself, can't get on the toilet myself, can't walk. But! goes away after three days. Probably the flue.
05/16/2011     -     appt. UBC MS Clinic
09/09/2010     -     appt. with Dr. Devonshire neurologist, UBC MS Clinic.

I haven't been keeping track of my MS episodes, or past appointments or any things MS related because it doesn't make any bloody difference. And, who wants to read, or write a diary of bleakness?

But, the nurse in Montreal from shared solutions [ from maker of copaxone] wanted to know my history.  And the nurse who showed us how to do the injections, suggested I keep a daily diary of every little change, so I could see if copaxone was actually helping or not. Ya ya, well, I'll give it a try.

Today, Thursday 27th of February 2014, Irene injected me on the right side of my stomach. Again, the only side effect is my right lower lip is tingly. And, the right tip/side ob my tongue. There doesn't seem to be any injection site reaction, which is good.

The trouble with copaxone is it is a daily injection. It is a really tiny needle, unlike avonex, but still.

The nurse came over yesterday to show Irene and I, well Irene, how and where to do the injection. It went really well. Irene injected me on the left side of my stomach. The only side effect was my right lower lip felt a little tingly.

From about July of 2013 I've been going to GF Strong and seeing both a physiotherapist and occupational therapist; Daryl and Nancy.

Nancy had all sorts of suggestions on how to manage and do things better, while Daryl worked with  me on balance, leg strength and shuffling around with my cane and walker.

Late October, early November I started to go numb from my waist down. At the peak, about mid November, I couldn't feel it when I went to the toilet, couldn't really feel my feet when I stood, and it felt like I was balancing on bowls of jelly when I sat. Even shifting around in bed was challenging. It was really depressing and frightening.

I saw my neurologist  in early December. She said there wasn't a real lot she could do or prescribe, but decided to try prescribing copaxcone. She said there were almost no side effects so she felt confident prescribing it. Copaxcone is not a steroid, anti-inflammatory or any kind of drug.

" Copaxone (glatiramer acetate) is a synthetic protein made up of a combination of four amino acids that chemically resemble a component of myelin (the insulating material that protects nerves and helps them work properly). Copaxone induces the production of immune cells that are less damaging to myelin." ... or so they say.

I waited till the new year to start it, and it took a little bit of coordinating, so the first injection was actually just yesterday,  the 26th of February, 2014.