Update on the Lumbar Puncture (spinal tap)

The procedure took place about a week ago Thursday.  It was done a different way and that was having me in a sitting position on the table bending over vs laying down with my knees up exposing my back.

I have endured this procedure on a couple of other occasions in the beginning of my MS.  I knew what was happening.  FOR THOSE THAT MAY BE UNEASY LEARNING ABOUT THE PROCEDURE, PLEASE SKIP THIS NEXT SECTION.  IT IS NOT GORY OR ANYTHING BUT I DO UNDERSTAND THOSE THAT DO NOT LIKE READING OR WATCHING ANYTHING USING A NEEDLE.


I was by myself in the room with the doctor and his nurse.  Sam could not be in the same room with me during this procedure.  I knew this so I was not concerned.  As a side note, he does not like watching doctor shows of any kind; real or fake.

As I had mentioned, the doctor had me in a sitting position, gave me a pillow to lean over and a chair for my feet.  He raised the table up and he began.  The doctor washed the area, put on a protection mat to just have the area in site (it is like what you would see in a doctor show where they are pinpointing the one area to cut and they put a pad down with just the one area exposed).  This stuck to my back.  He figured out where to insert the needle in my spine by using his hands and marked the area.  He then numbed the area so I would not feel anything further. The numbing was like you might have at a dentist; you feel no pain.

The doctor had difficulty inserting the actual spinal needle, where one would normally insert which was between the 4th and 5th vertebra.  He hit bone and not between them, upon his first try.  Apparently, I have a mild curve to my lower back which caused this problem.  The doctor moved to the 3rd and 4th vertebra and was successful.  He took several vials of fluid for the testing.  He sent off two to a lab and kept two-three others for testing at the hospital.

Once he was finished and a band-aid  was in place where the needle was, I had to lay on my back for 30 minutes.  I was told to go home and rest the rest of the day and drink fluids, water in particular.  Before I could leave though they needed a blood test so I was wheeled down to the lab.  ( I was not allowed to walk anywhere but had to use a wheelchair.)  Sam left before I found out about the lab test, to bring the car around to the front of the hospital.  I was worried for several reasons while I was waiting for the test.  One, Sam was now waiting in front and having to stay with the car and not knowing what was taking so long.  Two, he might try to come in and go up to the floor I was on originally on, looking for me, not finding me, and trying to figure out where I went.  If he came to the waiting area for the lab, I would be inside the room and he would still be looking.  I know--such a drama I had in my mind.

It did not take too long to get the blood test and I was on my way out to be picked up.  I could not see the car at first and I was offered a phone to call him but Sam does not answer his phone.  Nor does he have a voice mail box set up.  (I need to take of that problem).  Anyway, I had the nurse take me outside and he was there waiting, along with a number of other cars.

We were on my way home.  I did take it easy the rest of the day and felt OK.  One problem that can occur with a spinal tap is a headache.  Usually it occurs the same day but I found out later it can happen up to 5 days after the procedure.  I was told I could do anything the next day if I felt OK.  So I did my usual stuff... WRONG.  I had a headache for 4 days.  I could not understand why but I could not cough without getting a sharp pain, going to the bathroom, or anything that required any exertion with my body.  I was miserable.  I tried taking 4 Advil at a time or 1 Imitrex and 2 Advil.  Either one worked for a short time but then it would return.  I was OK during the night but I think it was because I was laying down.

I drank fluids such as water and tea but it did not help.  I finally contacted the doctor and was told I was experiencing a low pressure headache because of the reduced spinal fluid.  I was told to drink anything caffeinated such as coffee, or highly concentrated caffeine drinks.  If they did not work, use NO DOZ, which is caffeine in a tablet.  If this still did not work, I was told a blood patch might have to be used to bring the fluid up.  Thank goodness the caffein drinks worked!  Once I started drinking them, I felt so much better.  Caffeine apparently helps your spinal level.  Who knew?

Results are not back yet.  I was told 4 weeks before anything is known.  It takes this long!  So I wait.  I will keep you posted.

The trip....part two and other stuff

Remember in part 1, when I had mentioned that Sam took advantage of two wine tastings, well, he met the maitre' de  of the restaurants, and they hit if off.  They had a common bond, being Italian.  When Sam mentioned to him later that we did not have a chance to drink our champaign we had brought because we wanted it with the strawberries, he explained that strawberries were hard to get and this was why it was not offered on the menu.  This did not mean he did not have any, it just meant the strawberries were not offered to the general population.  Georgio would take care of it.  Later that afternoon/evening we had a knock on our cabin door and in walks a waiter with a tray of chocolate covered strawberries.  What a treat!

I think that might be the reason we are on the DVD.  Georgio was the person who was standing at the the top of the champagne glasses doing the waterfall of champaign.  Anyone who wanted could take a turn and have their picture taken with him and spilling champaign down the glasses.  We did just that - I was able to get up the few steps (with help) to the top and have our photo opportunity.  This same shot was in the DVD.  As I had mentioned before, what a surprise it was to see us on the DVD.

After we finally returned home, reality came back into our lives.  Doctors and dentist appointments once again reared their ugly heads.  I had switched dentists when I had lost a back tooth and it was recommended to me to have an implant because of the way my teeth were aligned.  If I didn't, I could lose other teeth.  The dentist I had, wanted me to do this implant procedure in his office.  He thought I might be able to get away with one if he positioned it in the center.  I was uneasy about that and went and got a second opinion.  I was so happy I did?  The dentist I have now suggested that I see an oral surgeon to have the procedure and then he would take it from there.  The surgeon told me I should have two implants because just one centered would not work.  I would have further troubles.  I was sedated to relax me but not to put me out completely.  I was aware of everything but I never felt anything.

I have since moved on to now being back with my new dentist.  Dr. Reynolds had to do a comprehensive  evaluation on me (being a new patient) to see how my teeth were and what if anything needed to be done.  He saw some old fillings had started to leak causing space to develope between teeth.  I needed three new crowns on the top left, two new crowns over the implants on the bottom left and one on the lower right.  Once all this work was done, I would be good to go.  What fun...not!  I should have three crowns finished next week and the start of the two bottom left (implants) started.  Basically taking impressions for the crowns.  At least the chair has a movement to massage your back while you are sitting/laying there.  It's kinda a neat feature for a dentist office.  The dentist isn't bad looking either... :-)

I had my spinal tap done a few days ago.  Everything went well and I did not have any headache afterwards.  I won't know any results for another 4 weeks.  I did learn that my back has a small curve in it which caused a problem getting between two vertebrae that is usually used.  Instead of the 4th and 5th, I need to remind a doctor to use the 3rd and 4th if another tap has to be done.  I don't see that happening anytime soon.  I did need to have other blood work done at the same time.  So far, all I can tell from the results is that I have MS.  Well, how about that......

We are waiting for our paintings we had purchased from the cruise to arrive.  We are hoping this week but what else can we do but wait.  We will be changing the walls in the main part of the house to the artwork.  We took the family pictures down and have moved them to the other rooms.  We can't wait to see everything again!  We are so excited to see the new look.

I am using my walker more now than before.  Especially shopping or going very far but I have had to use even in the house.  I have taken a couple of falls lately but no injuries.  I catch myself before I completely hit the ground.  MS is such a pain.....more ways than others.

The trip, and....

I didn't know what to call this entry.  Maybe it will come to me as I get into the message.

We had a great time on our cruise the end of April when we went to the Caribbean.  We had great weather and the ship was very large and beautiful.  If you ever get a chance, look at their website and look for the Royal Princess and see a short video about the ship. The Princess Cruiseline staff were very helpful for us because I used my wheelchair the whole time around the ship.  I didn't in the suite.  Yes, I said suite.  We had a mini-suite that was handicapped accessible.  We also had a large balcony with privacy.  We brought a bottle of Almond Champaign with us in hopes of having chocolate covered strawberries with it.  Alas we never saw it on the room service menu or at the restaurants.  We were disappointed.

Wine tastings were offered on three different days and Sam took advantage of two them.  I was on my own and even though it took some effort to get around by myself, I still managed to wheel myself around going. On and off elevators, doing a little shopping or just enjoying watching the activities that were going on.  One such activity was a ring toss around bottles of champaign.  It was the ship's champaign so it wasn't the greatest but OK.  I watched people take their turn and only one bottle was won from three.  People gave up and the search was on to find anyone to continue the game.  They asked me and I told them I couldn't stand to do it but the person told me to come and try it anyway.  I was placed closer than the others.  My first try missed.  My second try missed but was close.  I was successful with my last toss and was able to put the ring around the bottle.  It was fun doing a game but now I had two bottles of champaign.  Ours and the prize.  I had to get it back to the room and drop it off.

We went to an art auction aboard ship and bought 5 pieces of art and a poster by Leroy Neiman.  Whenever we left the action, we were given, along with everyone, else a lithograph print of a painting by one of the artists being represented.  We received two (we went twice).

On one of the excursions we took on St. Thomas, we stopped into a shop to look at some pirate items.  We bought a baseball cap  with a pirate them, a new pirate flag for the boat because, after all, the Black Pearl needs to have her flag.  We also picked up a large map of the Caribbean.

We also did some diamond shopping.  I have a new diamond necklace.  We also bought on ship another necklace to go with one of my long dresses to wear.  There were two formal nights but we didn't dress that formal.  We did dress up but that was all that was needed.

Pictures were taken by us and by the photographers on the ship.  We have some nice ones from the two formal nights and when they did the champaign waterfall.  We also bought their DVD showing things about the cruise and activities that happened during the cruise.  It was a big surprise to us seeing us on the DVD.  First a movie, now a DVD.  We are famous...

Once we returned to the states, we had little problem getting through security or immigration.  We found our shuttle to get our car (we had it at a Park N Go), picked it up and away we went home to South Carolina.

to be continued....

Joke

Why did the boy put peanut butter on the road?



To go with the traffic jam!

New Medication

I have started a new medication.  This one is in addition with all the others I take.  It is called Aricept or by Donepezil (generic).  This is a medication given to people with Alzheimer's or for those people with mild to moderate memory problems.  This is a problem I am dealing with now and have been for awhile.  Until this was confirmed that I indeed had this problem, it caused a lot of hurt feelings and exasperation.  Short term memory has been difficult, especially introductions to new people or even persons I have been around and still can't remember their name when I see them again.  Or if I am in a meeting and trying to remember what was said.  I can take notes but the shorthand usual does not relate to the anything.  It is hard to fill in the blanks.

I am not saying I can't remember anyone.  This isn't the case.  I just have difficulty remembering new things and sometimes things from the past.  It is so frustrating for me and I do get upset about it when I can't remember.  I know that when you age your memory starts to decrease.  The problems I have may be part that, and/or it may also be due to my MS, which is a good possibility.

My concern was raised by my neurologist when he was showing me the last MRI that was done on my brain checking for any progression and stated that my scan also presented the same for Alzheimer's.  My doctor said I was progressing and this was why I was put on Tysabri, but he also told me that when I would tell people I had memory problems and they blew it off as "we all forget sometime", this was an actual problem for me.  I am not making this up.

This problem has been one I get depressed about.  I have trouble remembering how to spell words (thank goodness for spell check) but even that sometimes doesn't work when you are not even close to having the right letters.  I know some do have that problem with spelling, even without a memory problem, but for someone who could spell words without thinking about it, especially being a secretary for so many years, this also has been hard.

I am going to have a lumbar puncture in May (the earliest I could do the test) to see if I have the beginning of Alzheimer's.  Now before everyone gets upset, this can be a long time before anything major happens, IF indeed I do have it.  The memory problem can just be related to MS.  I just need to know!

If indeed I do have Alzheimer's, this will give me a chance to try and do everything I can to head it off as much as possible and to plan for it.  IF it is not, I will still remain on the Aricept for my memory.  I will still work on dealing with the memory problem.

My decision to check for this has been two fold.  For my information and for my children.  If I have it, my children might have a chance to have this as well.  The information might be needed later in their lives as they age.  My hope is that this is not an issue.

Infusion went very well

I arrived at the Palmetto Infusion Services Center a little earlier than my appointment time but they took me right in.  I sat on one their oversized recliners and waited for things to happen.  Because I was new, I had to sign and read quite a few documents as well as having a new nurse in the unit doing the prep work.  Christine wasn't new as a new graduate, she was new to the Infusion center.  She had many years as a nurse and in doing infusions.  She served in the Military and had many years doing the same thing, starting IV's and taking care of personnel.

When it was time to find that all elusive vein, I told her not to go for the hand but the wrist.  Nope, she would not listen to me because she said she had been dealing with many patients and said they always want a certain area all the time for infusions and she new best.  Guess what?  She wasn't successful and had to get a vein in my wrist like I had told her.  Of course she had a reason why it didn't work.  It just left me with an ugly bruise on top of my hand.

I have not had any side effects so far (knock on wood) and I hope that stays true.  I haven't seen any changes in my ability to get around but I don't expect to because this is not a drug to reverse anything, it is a drug to slow down the progression.  Progression will still happen but only at a slower speed.  At least this is what the information said.

Palmetto Infusion Services also have doctors on staff.  I feel better knowing this for that "just in case" feeling.

I really feel pretty well.  I still have my moments but I know how to deal with them.  I get frustrated when I have to decline going anywhere because of my MS at times.  I want to have that normal feeling again.  To be able to have fun without checking myself that I am not over doing and causing more of an issue for me.  Taking a long trip or a long day of shopping without some sitting will usually cause me to need a day to recoup.  The long drive will stiffen up my legs so when I start to walk, it takes a while to get those old legs moving.  I am just not able to go, go, go.  Ah, the trials of MS.  I just have to laugh and continue on.  What else can I do?

Today was the day

I finally had my infusion of Tysabri (tie SA bree) today.  I was a little apprehensive but I usually am when it comes to something new.  I can do research all I want, know how any procedure will go, but actually having something done is scary.  I just want this drug to work for me.  If I can't tolerate it, I do not have many other options to go too.  I am going to take it one day at a time and hope it all goes well.

Tysabri is a powerful drug to help slow down the progression of disability.  It is not a cure.  This drug comes with several side effects as most drugs do but there are a couple of serious ones.

Tysabri may increase my risk of getting an infection of the brain or the covering of my brain and spinal cord caused by herpes viruses that may lead to death or severe disability.  This is called Progressive Multifocal Leukoencephalopathy (PML).  The chance of getting  PML increases if I have been exposed to the John Cunningham Virus (JCV).   Typically, people with JCV are exposed to it during childhood and is harmless but it can cause PML.  A blood test was done to determine if  I was carring the antibodies to JCV.  I tested NEGATIVE, which lowers my risk compared to someone who is positive but there is still a chance of getting PML, which is something the doctors have to say to cover themselves.  Getting PML is very rare.  This drug has been on the market for several years now.

Tysabri could cause liver damage and it will lower my immune system.

Now, I am sure this all sounds very scary.  I was scared about this drug when it first came on the market and said "No Way was I ever going to use this drug". I guess I had a change of opinion because now I have gotten a little worse and I want things to slow down.  This drug is not like a steroid.  When I had the infusion of steroids, it was to stop a relapse.  I do not have relapses but continue with the same symptoms but they can progress.  I will never go back to what I once was.  I deal with that on a daily basis.  Actually, we both deal with this every day.

If anyone have questions or concerns, talk with me.  You can go to www.tysabri.com for further information or just put in Tysabri and it will pull up a lot of web sites to go too.