I found some information on the new PML patient.
Her husband is blogging and has posted on an MS board in Germany.He wants people to know what to look for and what the procedure is when someone is diagnosed with PML.
Female, German, no age listed. The link below is for his blog and you can translate it through Google, comes out a little rough, but you'll get the drift.
http://chefarztfrau.de/?page_id=418#comment-22427
He says she is ok, has had three PLEX treatments so far and will be back home in 2 weeks or so.
What she was on for prior treatment since 1996:
Endoxan - has not helped
Duration of prednisolone therapy - has not helped
Imurek ( Azathioprine ) - has not helped, but it gave her pancreatic insufficiency
Betaferon - has helped a little
Mitoxantrone - the best , had almost no relapses during this time
unfortunately had to be discontinued because the life dose had been exceeded.
The distance of the last Mito-treatment to the 1 Tys-infusion was more than a year.
He followed with a list of what he saw in her affect and behavior so others would know what to look for. It doesn't translate well but you get the picture:
Memory
Rarely visited places such as supermarket, bakery, hairdresser, etc., are not known.
Local difficulties, little sense of orientation. Even places that are visited more often, are not known (eg, doctor's office every month).
With music from the radio, the artist is no longer recognized - previously not a problem.
Voices and names may be famous people and friends no longer be assigned.
But:with some help, such as giving the first name, the answer is immediately given.
Compared with a hard drive disk without Table of Contents: Data are there but where?
Things will be forgotten at the moment (food on the table and forget callback phone, cell phone or lost keys).
When demand is not known what the day was done.
Repeat different events again and again - almost literally.
Long-term memory is usually not a problem - eg The school learned the Russian language is still very good.
General Knowledge, English language, grammar is not a problem.
2. Cognitive Thinking
Is very impaired.
The clock reading makes progressive problems (including several requests), and often do not know what day of the week or date, we have.
simple math in general does not work anymore, always comes back to others and incorrect results.
Explain the problems of things must be said repeatedly.
Logical understanding of a variety of things missing.
Some things will be misinterpreted despite clear.
Clinging to false ideas even stated that these are wrong.
Jokes are sometimes not understood.
Partial alien world views.
But: Still happy, laughs and fun.
3. Hypersensitivity of the senses
Listen (everything is too loud)
Flavor (all too salty, too spicy - is demonstrably not so)
Temperature (often too cold to bear even for the distance of 10 m to the car gloves)
Pain (even moderate bumping is considered to be very painful )
4. Fatigue
Fatigue is always present but has become very extreme.
Striking after meals or smaller activities.
5. Inertia
Everything takes extremely long.
Morning or evening in the bathroom about 1 hour
A few things in dishwasher admit 30 - 60 min.
Food: breakfast, lunch or dinner at least 1 hour.
6. Motivation
No longing to do different things.
Washed clothes for sorting is taking two weeks.
When pointing out - the answer: No time.
Tablets were previously prepared for a week, now max. for a day.
7. Mild aggression
Changed behavior even at small things that otherwise were not a big issue.
Arguments are more aggressive than usual
In order to exclude PML, two things must be done
1. MRI: The MRI should not be a striking image which.
PML samples may be the expert of MS stoves usually differ.
If the MRI is a prominent PML and it probably goes to the next investigation.
2. Liquor: The DNA of JC virus in cerebrospinal fluid must be negative.
Will he demonstrated, is a PML of evidence for themselves.
But beware: The first laboratory could not demonstrate JCV.
Only a 2nd Specialized laboratory, the DNA of the JCV isolate.
That was one of the other PML cases as well.
The DOC should preferably two tubes nerve tap water (then it hurts only once)
and at two different laboratories send.
The times so far to the Syptomen.
I would like to note that this weeks slowly developed.
At first you think nothing is there.
Anyone who has MS knows that: day, where it is going well and others where it is worse.
That should of course try to delineate. Nevertheless, the smallest doubt prefer to look.
The sooner PML is detected the better the recovery process and possibly consequential.
More on this topic and how it was dealt with in my next comment.
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The following therapies were carried out:
10 days every 8 hours Zovirax (antivirus resources)
3 x plasmapheresis (tys is washed from the blood)
Viren-binding compounds (name and dosage are not known to me)
Bladder-modulating, discontinuation of all meds (unrestricted Urine- release)
That's really it. Much more - unfortunately not.
And also the last. After so many cortisone treatments and chemo (mitoxantrone)
there are only a few usable veins.
Under these circumstances, to find three veins every day is not easy. But things went fine.
For plasmapheresis you need an extra entry into the neck-vene and this catheder needs to be sewed on.
This so-called Sheldon catheter is quite uncomfortable.
Not because it hurts but it bothers simply on the side (rubs when turning the head and pushes at night when lying). Is not exactly a small part.
The plasma exchange can go on the cycle, but is not painful.
My wife has tolerated without complications.
After the tys is washed from the blood - it means waiting.
Repeatedly MRI to monitor and further Liquor-checks whether the virus has reduced in number.
At the moment, it looks quite good. In recent MRI has revealed no other lesions that do not absorb contrast.
In this case positive, because PML lesions take no contrast.
The clinical picture has improved significantly. Many of the symptoms have significantly improved - or are even decreased.
Now we must hope that the immune system does not act up and no IRIS (immune reconstitution inflammatory syndrome) will show up.
My wife will still stay for observation in the hospital for about 1-2 weeks. after a total of 4-5 weeks, she will then be happy to return home to stay.
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My personal thanks to "Ridge" who found the site and posted it first to another board! Her help is invaluable with the .de boards and translating and I appreciate all the work she does! She's one of the good guys and she is on our side and when she posts from across the pond you can rely on the fact that she has done her homework previous to posting!
