I've seen inside my head and it's not pretty!

Isn't it such a joy that MS is not the same for any two people! There are so many little symptoms and signs that everyone has a different story to tell. Forums are full of people asking "Does anyone else have.....?" Once you have a diagnosis of MS it becomes a constant process of wondering is this caused by MS or something else. There are the obvious favorites - optic neuritis, spastic legs, slurring speech, insomnia, cog fog, muscular weakness, fatigue that feels like an elephant just sat on you, the MS hug.....but others pop up to - urinary retention, - did you know that their are little mini catheters the size of a lipstick - I didn't until I joined a forum for women with MS - difficulty swallowing, headaches...the list goes on!


So you get a handle on your disease symptoms and you know what's normal for you. It is perfectly normal for me to slump sideways when sitting and when standing or walking too long. I know if it's hot I lose most of the sight in my right eye. I cannot remember much. Simon says I have man brain disease. It is not a pleasant experience. I also lisp and my tongue stops working if I talk too long. So if you're getting the picture of a drunk Castillian you're getting it about right.


I have not had relapse-remission since being diagnosed but based on my history I've obviously had a few relapses and remissions back to pretty close to normal in the past. Now I'm sort of in limbo. Limbo is among other things the borders of Hell - very apt I feel. I have not got worse but I have not got better. Since it's been the same since August I am aware that I may stay the same for some time or I might get worse and then either recover back to my present state, recover but not be as 'well' as I am now or just keep on pitching down hill. What a strange disease!


I am now on Copaxone. Once daily injections that are barely noticeable going in but hurt like hell a few minutes after. Copaxone is Glatiramer acetate -  noninterferon, nonsteroidal agent that is supposed to reduce relapses in people with remitting-relapsing multiple sclerosis. It has a nice list of side effects that I was told about but because I like to be an individual I went for one of the rarer ones - hugely odematous feet! The side I inject on is always the most odematous but I have cankles and my feet, which were quite ugly anyway, look revolting. This is not life-threatening - unless it is caused by my kidneys failing! - but it is not pleasant and it is hard to tolerate it in the hope that it will slow down the progression of a disease which has left me the proud bearer of a mobility park placard already. 


I voiced my concerns at the last visit to see my neurologist and she decided to try me on a 5 day dose of high dose steroids and decided that I should have another MRI. The steroids were oral methylprednisolone so I was able to have them at home and just be a horror witch to all around me. They didn't realize the protection an inpatient stay gave them! I finished them about 8 days ago and have seen no real improvement but apparently these things take time.


The idea of another MRI filled me with dread. I decided to go private - after why have health insurance if you don't use it. I'll tell you why! A 2 hour MRI and all the accompanying bits and bobs cost NZD2800 and our Southern Cross policy covers MRI's to a total of NZD1200 per year! Great if you want your hip or ankle checked but not if it's your brain and spine. Depite the pain of the cost the experience was so much better! I think the radiologist at Auckland must be a sadist because there was no need to strap me down like Hannibal Lecter! I spent my private MRI looking at photos of US national parks and listening to the Edge. I did have a mild sedative because I had thought I was going to be restrained and needed something to help me cope with that! They gave me weird looks when I told them I wasn't claustrophobic - I just don't like being tired down.


Two days later the results came in the mail! Beats the one month and having to ask what it said last time! I have no new lesions which is no surprise - I am the same not worse! I have a possible telangiectasia - that could be why I've started having migraines or it may be nothing! I have to now see the neurologist to see what it means. what she had better not say. She is a good neuro so I'm pretty sure she won't say anything dumb!


Now we come to why I had an MRI. I didn't tolerate betaferon - deranged LFTs, skin marking, itching, swollen sites.  I'm not doing so well on Copaxone - odema, swollen/red sites. So what does that leave? Well it leaves the drug that everyone gets really excited about because you only get it as last resort! A monthly infusion of Tysabri - a selective adhesion molecule which attaches itself to the damaging T-cells, it prevents a majority of them from crossing the blood-brain barrier and entering the CNS. And even if a few do get across the BBB and enter the CNS, Tysabri is able to migrate them away from the myelin, providing double coverage from the damaging T-cells. Sounds dandy, right?



Now for the risk whose name we dare not speak:  According to information released by Biogen Idec, as of September 1, 2011 there have been 159 confirmed cases of progressive multifocal leukoencephalopathy (PML, a viral infection of the brain that usually leads to death or severe disability) among people who have used Tysabri® after it became available for prescription in July 2006. AND 18%  of those who have developed PML have died (29 out of 159). The degree of disability in the survivors is a wide spectrum: at the milder end, some have recovered enough to return to work, and at the other extreme, some are confined to bed, requiring extensive assistance with activities of daily living, and others were in between this range. The overall global PML rate is now at 1.62 per 1,000 patients but it rises the longer you are on the drug – currently about 3.03/1000 for those on the drug for two years or longer. So sounds like small beans - 0.16% chance of developing a disease that could kill you. Well I have two problems with that!
1) MS has pretty much 0% chance of killing me
2) I specialise in developing the rare and unusual side effects.


So I know it's a really amazing drug - people report they feel so good on it. It seems to be a real tiger against optic neuritis BUT it can lead to death - and not a nice calm death, a really really nasty death.

Big promises!

PML is caused by the JC virus. However, many (probably most) people have been infected with the JC virus. It does not cause any disease in people unless conditions are just right. One such situation is in people taking Tysabri. In a small percentage of people who take Tysabri, conditions will be just right for the JC virus to proliferate and cause PML. So technically if you don't have JC antibodies you should be OK on Tysabri. But 

a) is this test carried out routinely in New Zealand?

and

b) if it's so common what if you catch it while on Tysabri!

So if they grin and say 'yay, you can go on Tysabri' _ I'm going say 'whoa'. I'll need a lot of convincing to go from I feel like shit but it won't kill me to I feel grand but I may die a nasty death.

Of course I may have failed the MRI test and it'll be a moot point and I won't need to worry at all!

My history

Here is a brief rundown of the past events that are now setting off alarms in my poor head.

In the mid 90's while training as a midwife I had an episode that lasted two weeks or so where I developed very slurred speech and had difficulty moving my tongue. It was investigated by physical exam and I was diagnosed with a post viral syndrome and sent on my way. Since then I frequently felt less mentally adept and sometimes quite foggy.

I started to suffer from an overactive bladder - the key in the door syndrome - when you gotta go you gotta go.  But after 5 children the pelvic floor probably wasn't the best. I recently addressed this through medication. Medication I initially suspected caused the blurred vision - it dries your mouth out so maybe it dries your eyes too.

I started to get quite achy about 7 years ago and worried that I had arthritis. A visit to a specialist left me with the diagnosis of Fibromyalgia which I have basically treated by ignoring it! I was achy, had brain fog and my hands felt tight most of the time and I am always tired.

When I was pregnant I developed Cholestasis of pregnancy and had many blood tests. One thing that showed up was the presence of Epstein Barr Virus antibodies.  I had glandular fever as a pre-teen following on from mumps and the mysterious post-viral syndrome so this is not surprising but many people with MS have higher than normal levels of the EBV antibodies.

Six years ago we moved to a new house with stairs. I slid on the stairs 3 times in quick succession - damaging my tailbone quite significantly. It became a major mission to descend the stairs and I still have to really concentrate.  Not helped by the removal of the stair rails for DIY.

I have often choked on my saliva and taken food down the wrong way. It's a transient thing but worried me enough to get a referral. Of course the day of the investigation it showed little more than a slowing/pouching at the back of my throat but nothing going into my lungs - I could have told them that without the machine! So I continue to choke and sometimes spaghetti dangles into my lungs and I cough madly and sometimes a small amount of food feels like (and I'm convinced it does) gets into the top of my lower respiratory tract and I choke and cough and feel like my lungs are seared.

I have irritable bowel syndrome though it's not been too bad for a few years - could be learned management!

I knew fibromyalgia responded well to exercise so I pushed myself to run.  I was enjoying it and getting quite a bit of zip when one day I managed to slip off the kerb (bit like stairs!). My foot felt like a knife had gone through it. This sent me off on a whole nother tangent - (ACC blaming my split perineal tendon on degeneration rather than accident because I'm so old! No payment for surgery so it's been two years and it is finally coming right due perhaps to the Steroids).

So running was pretty much out the door. But I could still walk my dog......until about 5 weeks ago when I suddenly struggled to make it up the driveway and could only hobble 300m down the road. It was a combination of weakness and pain in my right hip which has been part of my life since I was a teen.

The off-shoot of no exercise was weight gain! So I started a weights program which has helped a little but my lifting weights have dropped significantly. Where I could do 15kg per arm I'm now struggling with 5kg! I'm also too damned tired!

There have been other things which I was really not aware of until I began reading a book today and thought "Holy shit! That's me!". I 'see' sounds - I get bright flashes with loud or sharp noises.  When Simon gesticulates with his fork I feel like it is grabbing my eyes and pulling them. I can get vertigo on very small heights (anything more than 3 steps up a ladder is no go! I splash cups of tea and coffee all over the place.  I love hot baths but my legs get really tired trying to keep me from slipping under the water! After 15 minutes all the fun has gone out of it. It is also pretty hard to keep the book from falling in the bath (Can't have a bath without a book!) as my hands feel swollen and start to ache.

I can't keep my legs and arms still for more than 15 minutes - try 45 minutes in an MRI machine without going insane - I cried and would have screamed but I'm too socially constrained.

So I have a whole hodge podge of symptoms which have been investigated in isolation and never really linked.

Maybe a neurologist will pull it all together but based on my past experience I'm really not holding my breath. If I wasn't such a sceptic I'd really have little faith in medicine! I'll tell you one thing if I find out I have MS and I'd have had a better prognosis if it had been investigated more fully at the 3 crucial presentation points I will be up that postal tower pretty damn quick!

Why I changed the direction of my blog.

On the 10th of July 2011 I woke up and couldn't see properly out of my left eye.  The vision was really blurry and dark.  Within an hour it came right. The next day it happened again and lasted a bit longer.  On the Monday it lasted all day but the blurry area became narrower as the day progressed. On the Tuesday I made an appointment with my optometrist because it just wasn't right.

The optometrist carried out a battery of tests including peripheral vision testing, colour recognition and the usual acuity tests. Based on the results she told me to front up at the Eye clinic at Greenlane Clinical centre the next day.

The clinic opens at 7:30 but I couldn't make it until 8:30 so faced a bit of a wait. That was fine, I had a book. After about 3/4 hour a nurse called my name and took me off for triage. It then transpired that the Optometrist had written the date on her referral as 8/7/11 so they thought I wasn't particularly compliant. After explaining that 'no, I actually saw her at 4:30 yesterday' things changed.  I was placed in the acute waiting room - a dimly lit area. 

After a short wait I was called by a Reg who repeated most of what the Optometrist had done but did mention that optic neuritis which was what I had can be associated with MS!  Normally this wouldn't be a biggie but my past clinical picture made alarms go off in my head (I'll go over this in my next post). 

A HS came in to apparently take my history as I was headed for the Eye Ward for possible steroids.  Near the end of this history taking another Reg came in to explain a bit more. She skirted around MS but I told her the previous Reg had mentioned it (I'd also googled on my iphone in the interim!). She then explained that Steroids can speed up the healing of my eye - it would also heal without them - and may delay onset of MS in people developing it by 2 years. So did I want to proceed with the steroids - that would be a yes.  The next suggestion was an MRI. I wanted as much information as possible  so agreed it would be a good idea.

So I was admitted to the ward on the Wednesday for IV Steroids - only to discover it was 3 days worth! Oh well a change is as good as a holiday so I settled in.  The steroids were foul. I had nausea, a metallic taste in my mouth, insomnia and general malaise.

On the Friday my MRI was booked. This was one of the most horrible experiences in my life. It was not the small space that caused me distress, it was the being totally immobilised and bound across my chest so tight it caused paroxymal coughing which naturally made imaging difficult. I had to keep my eyes closed but my eyes tend to dart about even when closed so again I was not popular. The whole torture took 3/4 hour and if I never have another one it will be too soon.

I returned to the ward for my final dose of steroids and my discharge. I was given an appointment 13 days later to come back.  When I said it seemed along time to wait to find out if I had MS, the nurse said there was no mention of it in my notes - you'd have thought that would have raised a flag but no. I was sent home on 16 days of Prednisone - 60mg for 14 days and 10 mgs for 2 days. 

The oral steroids were only slightly better than the iv. I've been not particularly hungry (a plus), grumpy, barely sleeping, swollen and foggy. It does seem to have helped with muscular pain but my eye stills feels like there is a smear on my glasses - but I'm not wearing any.

So today, 13 days later I returned to the Eye clinic. The wait wasn't too bad as I had an appointment. I was seen by another Reg and took this as perhaps a good sign because surely if there was anything bad on the MRI the boss would be seeing me. She did all the tests and then said she was going to discuss it with the Consultant. There was a long wait and then the consultant came in.

She explained that things seemed to be improving - I see dark orange rather than light orange for red out of my right eye now. My vision had supposedly improved but that is probably only due to the fact I had my contacts in rather than my not-good glasses.

"So, do you have any questions?"

"Ah, yes! What did the MRI show?"

"Well, it showed inflamation of the optic nerve and there were a few plaques.  It means you are likely to present again with optic neuritis"

"By plaques do you mean lesions?"

"Yes but you haven't got any of the other signs of MS"

"You mean like weakness and foot drop and episodes of slurred speech?"

"Ah yes! Do you have those?"

"Yes, I had slurred speech years ago and I had weakness and foot drop prior to the neuritis" (this had all been told to previous Regs and HS)

"Oh! Well we had better refer you to a neurologist. But we won't need to see you again"

And that was it! Out into the cold with no idea when I'd have an appointment or what to do if I was concerned!

The documentation must be terrible! I can see how people slip through the cracks. I could have presumed the MRI showed nothing and gone my merry way.

So I am now blogging to document my journey - be it to the world of MS or status quo.