MS Update...

...And not really unexpected news.


I had a visit with my Neurologist a few weeks ago because I had noticed my balance had been continually getting worse and I just had not been feel like myself...well atleast my new MS self. As I had suspected for some time the rate at which my health continues to deteriorate has increased. As I said, my balance has continued to get worse causing me to stumble on a regular basis and walking any distance at more than a snails pace exhausts me to the point I can not function. He also noticed that when I walk now I'm rolling one of my feet to compensate for the balance issues and dragging my feet more when I walk which also contributes to the tripping and stumbling.

He suggested doing an MRI and tweaking some of my meds. Increasing my Amantadine to 3 times a day and adding Ampyra 2 times a day also increasing my Nurotin to 300 mg 2 times a day and 600 mg at night. Like most medications for MS the Ampyra is extremely expensive so I had to wait to start it until I could get on an assistance program.
  Well that program came through while me and the Cable Guy were on vacation and my meds arrived a few days ago. The side effects are ugly but I continue to take it in hopes that I will get used to it and it will help. Unfortunately the success rate for this drug is only 30%. That is only 30% of all people with MS have any improvement in symptoms.

My MRI is scheduled for this afternoon after the required visit with the vampire yesterday for blood work. I have to admit I'm not very concerned by the test itself but the results of the test scare me to death. If there has been alot of change, meaning more lesions, my neuro wants to change my injections. This could be bad because I picked this particular medication, Copaxone, because it has relatively few side effects compared to the others.

I have to say that I have not really been satisfied with my visits with local neurologists and because of this I have been doing some research on other doctors that specialize in MS. I found one, an MS clinic, about 3 hours from here.  I have a MS friend who has an appointment there soon and if she has good results with them I will be pursuing that route.

 I have been having alot of pain in my neck as well as increased neuropothy pain and trouble with insomnia. All made worse by the fact I will be returning to school next week...

In the meantime here are some more pictures for our vacation...

National Multiple Sclerosis Awareness Week / Education Month

Since its Nation MS Awareness Week /MS Education Month I thought appropriate to say something about it.

I'm sure you are all aware that I was diagnosed with MS back in July (2010). That was my first diagnosed flair up. I have been having flairs since my early/mid 20's and like alot of people didn't realise it. Unfortunately since that last flair up I haven't had alot of improvement and continue to have declining and ever changing issues, some of which I didn't even realize were considered MS symptoms.

Since I didn't know these things were symptoms of MS I'm sure there are others out there that are as clueless as me so I thought I would share some of the things that your neurologist doesn't always tell you. Or what I call my list of TMI.

The bouts of nausea that show up without warning

The inability to go more than an hour without having to pee ( let me tell ya this will quickly determine what you wear for the day, if your hands are not working well you dang sure don't want to wear something with lots of buttons!)

The constipation/diarrhea (you either cant stop going or you cant go at all. Either way you have to plan your day around where the bathroom is)

The itching (its caused by nerves dying or going through the demylination process. Either way it will make you nuts!)

The changes in your menstrual cycle


And all of that on top off all the things they DO tell you to expect.


I'm SO OVER MS!

I feel like crap most days and I'm so over it. People ask me how I'm doing or how I'm feeling and 9 out of 10 times I give my usual answer " I'm OK" or "I'm good" when in reality I'm wishing I could just go home and crawl into bed. If I told everyone how I was really feeling every time they asked they would get tired of listening to me whine and complain.

I'm SO OVER MS!

I'm tired of living my life around my medication schedule, my need to rest after a simple trip to walmart, tired of looking like a black and blue crash dummy from losing my balance and running into stuff and having bruises from my injections every day.

I'm so over MS!

If you know someone that has MS and they tell you they are OK, take a minute and really look at them. Just because they say they are OK chances are they aren't and could really use a kind word, or a hug.

If you have MS, I'm sorry. {{Hugs}} to you. This is a horrible disease that has taken so much from the people that have it.

SO OVER MS!

I Hate When Things Don't Work Out As Planned

I'm sitting here on my butt when I should be at the very least doing homework but instead I'm contemplating even staying in school.

I got a phone call a while ago, a call I knew was coming, even expecting to confirm my appointment with Dr. G (my neurologist).

An appointment I was very much looking forward to, I know how weird does that sound, right? But I have been having alot of pain that I wanted to talk with him about and some other questions I needed to get answered. I fully expect every morning when I wake up to be in the midst of an MS crisis because the pain in my neck has been so bad for the past few weeks.

 I get the call and this little voice on the line informs me that because I don't have any insurance I have to pay $100.00 up front for the visit. Well that wasn't a surprise its always been that way. I have been saving that $100.00 since Christmas so I would be able to see Dr.G. BUT then this little mouse of a voice proceeds to tell me that I have to also make a payment towards my account or they wont see me. Well me not really expecting this just said OK and hung up the phone. Then it hit me...I cant come up with any money on the fly like that, its taken me weeks to save the money that I knew I was going to need.

So now as I sat there contemplating this turn of events crying hysterically thinking calmly I realize that now I have to call the doctors office back and cancel this appointment. Have you ever had to call and cancel a doctors appointment? They always want to play 20 questions, why are you canceling, do you want to reschedule?

It always tears me up to tell them no I cant reschedule because I cant afford it. I can just see them making so big red X on my file so that way everyone will know when they look up my name.

Its pretty sad that we live in one of, if not the best, medically advanced countries in the world but it cost so much for medical care millions of people are doing without care because we cant afford it.

Why finish my degree when the people that would most need my help will never get it because they cant afford it? I cant even help myself how am I going to help them?

Time Is Running Out...

...I go back to school next week and I don't feel like I have accomplished anything I had planned on doing. Well except vegging out on the couch resting and trying to recover for the coming semester but even that wasn't a success because my neck is still hurting. In fact at times I feel like one of those bobble head toys that cant hold their heads up.


My bedroom is still a disaster area and should have a condemned sticker on the door, my books haven't been bought for school, heck I don't think I even cleaned out my backpack from last semester. The receipts haven't been added up for taxes, transfer papers haven't been sent in, OK they haven't even been printed out yet. Scholarship applications haven't been signed, rehab papers haven't been delivered so not all of my funding is complete for this semester, but hey I did give the dogs a bath!  That's progress right? I heard on the news a while ago theres a chance for snow this weekend, and here in Arkansas when we get snow everything shuts down....come on snow!



image provided by google images


Its been great having the boys home from school, not that I see them much, but I will miss them when they go back...or maybe not....no, no  I definitely will. I just had a flash of how quiet it was in the first weeks of the fall semester...eweeee.


Oh well theres always tomorrow...

I Got A Phone Call Today...

...from Walgreen's specialty pharmacy that's in charge for shipping my Copaxone, thanks to NORD. Naturally I got all excited thinking they were going to schedule my next shipment of liquid gold. I only have about 10 days left so I was starting to stress about it. Well turns out I got excited for no reason and as it turns out I have every reason to stress.


My current prescription is expired and the pharmacy has been trying to contact my neurologist for a couple of weeks and hasn't gotten anywhere. I called the office to see what was going on, I mean come on all they have to do is send a fax takes 60 seconds tops. So I call and talk to Dr.G's nurse as always, come to find out shes been out since October and doesn't have a clue whats going on. She did promise to do some research and let me know whats going on, meanwhile its almost 4:00pm and I'm still waiting.

Bah Humbug!

   That's how I'm feeling this holiday season.


    I normally love Christmas, its my favorite holiday.


   But this year...I'm just not feelin it.


   The kids are both home from school, and finals are over for all three of us. I should be happy...but I'm not...well I cant say not happy...I'm just not anything... I'm not feeling much of anything. When I do its definitely anything but happy. It resembles more like sadness, anger, depression, even resentfulness (is that a word).


   I know it has to do with stress, and what the stress can and does trigger with my MS. I have been told repeatedly that depression was something I WOULD deal with at some point with my illness but I always figured not me, I'd be OK. WRONG!


   The stress isn't going away any time soon. Money has been tight for months since my husband and I made the decision for him to change jobs again, the second time in six months, so he could be hone with me because I was having such a hard time managing every day life and school and my MS with him and the kids gone. It was just too over whelming, but in doing this he took a huge pay cut and believe me we are now feeling it. Now out of the blue my step-son has decided he wants to come for Christmas, don't get me wrong I'm happy to see him if for no other reason than it makes DH happy, but why now after refusing to see us for over three years. So now I have to find the money to make not one but two trips out of town to pick him up and take him back. Christmas gifts that were already going to be few are now even fewer. I have already returned most of them once because I needed the money to pay bills. Then yesterday when DH started buggin about when he could get me something for Christmas I had to tell him he couldn't, there wasn't any money.


BAH HUMBUG!


   Its not the first time money has been tight, normally it doesn't bother me. I get gifts for the kids, gifts for my family, and always do gifts for the angel tree at our church.


   The tree has been up for weeks, but we just decorated it a few days ago. Granted I was waiting for the boys to get home from school to decorate it but I've only had the lights on the first night.


BAH HUMBUG!


   Normally I would have several batches of candy and cookies made....not this year...I did one yesterday and that's as far as I got.


   Sigh


BAH HUMBUG!


   I know its my  MS, I'm just so over it.


I want my holiday spirit back
        BAH HUMBUG
  


  


  


  

I'm So Ready...

...For a break!


   I need for this semester to be over, not because I'm like every other college student in America, but because I'm Tired.


   My body is tired, my brain is in a fog, and I have been sick for almost a month. I need a break.


   I HATE  MS!


   I hate what its doing to my body. I hate what its doing to my mind. I hate how its effecting not only me but the rest of my family. Alot of my previous symptoms are starting to show up again. The headache, the burning in my neck, the tightness in my shoulders and neck. I'm just waiting to wake up one morning and realize I'm numb again. Or worse.


   BUT the reality is I'm not getting a break any time soon. I still have to make it till December and get through finals with no major disasters.


   Pray I can hold on that long...

DENIED

   I can honestly say I don't think I have ever been so pissed off  aggravated,upset, disappointed (insert adjective here)!!!!


   If you have been keeping up with my blog you know since my diagnosis I have been fighting to get some kind of medical assistance. After lost paper work, wasted time on appointments, and months of waiting for a medical review board to meet to decide if I'm "disabled" enough to qualify for medicaid I finally got the letter in the mail I have been waiting for.


   Only it wasn't the news I was expecting. It was a big fat DENIED. Oh they were at least nice enough to acknowledge that after reviewing my medical records that I do indeed have MS, and that they understand I "may not be able to do the same work I had done in the past" I was still physically able to do "some type of work" therefore I don't meet the criteria of being disabled.


   So you tell me at what point in my day I am supposed to get said job that will pay enough to cover the cost of my medical care and my meds?


   I'm already taking the max dose of Amanadine which is supposed to help me not be so exhausted.That lasts all of about 4 hours then I HAVE to have a nap or I cant function. By cant function I don't mean "ya know a nap would be good about now" I mean I cant make a decision, I cant concentrate, I don't drive well because my reflexes are slowed, walking becomes even more difficult not only from the dizziness, but from the loss of balance and coordination and in extreme cases I have even been out somewhere and wondered how I got home because I don't remember it.


   My hands shake all the time, I have muscle spasms that cause me to drop stuff, numbness, trouble with balance, and that's all in the "good" part of the day. Not to mention my immune system that is now shot since starting my injection. I have had 2 cold/sinus infections in less than a month, and a tiny scratch, so tiny in fact, I didn't even know it was there until it got infected!


   (Don't get me wrong, I'm not complaining about the injections. I was warned before hand that a very real possibility would be that my immune system would be effected. That's really the whole idea to keep my immune system from attacking my nerves but the draw back is it also makes me susceptible to every infection on Gods green earth.)


   So friends...You tell me what employer is going to hire someone with my non-disability when they could hire someone without all the drama, and if I did manage to find this seemingly perfect employer what are the chances of it paying enough to A) cover insurance (keeping in mind I have a pre-existing condition so the already sky high premiums that I already cant afford will be even higher) and B) Making enough money to cover co-pays and deductibles C) me being physically able to safely work enough hours to keep a job without hurting myself or someone else?


   I realize I'm not the only person even diagnosed with Ms and that some people with MS continue to lead seemingly normal lives. Unfortunately even before my diagnosis I was having trouble dealing with day to day life I just didn't have a name for what was going on, and my symptoms continue to deteriorate instead of stabilizing.


   So I would just like to say thanks. Thanks to this so called review board, that has neither talked to me or seen me in person, for making a decision that effects my life so drastically by reading about me in a couple of medical files that are several months old.

Prayer and Patience

   I'm learning alot about patience on this roller coaster ride that is MS. At the same time I'm learning alot about the power of prayer.

   God does answer our prayers, we just have to ask. Weather its something trivial, or something monumental he wants to hear about it. That doesn't mean hes going to give us what we want just because we ask for it. He sees the big picture and knows our futures even if we don't. He always answers our prayers, even if we don't like the answers we get. I'm finding that out the hard way lately.

   When I had my first MS flare up (which wasn't really my first just my first one diagnosed) I prayed so much and for so many different things it got to the point I didn't know what to ask for any more. By the day of my scheduled MRI's I was just praying that my tests were not inconclusive. On the day of my appointment with Dr.G and what turned out to be the day of my diagnosis my test were in fact not inconclusive but they were not the answers I was hoping for.

   In the days since my diagnosis there has been many ups and downs, lots of prayers prayed. A big one for me has been how am I going to get my meds? God show me how. My meds are around $4000.00 a month just for my injections. Well after several long months of filling out paper work and waiting yesterday that prayer was answered in a BIG way.

   I was at school, as I am every Monday morning and got a phone call from an 800# that I clearly was not going to answer because 1) if its an 800# chances are is just a bill collector about my hospital and I have nothing new to tell them 2) I'm at school and not everyone needs to know my business (although I am telling all of you!).  The call went to voicemail, which until Sunday night had not been working, and surprisingly enough someone left a message. My thought was man those bill collectors are really persistent if they go to the point of leaving a message. After my last class was out and I had trekked what feels like 50 miles across campus I was sitting in my car trying to catch my breath I figured I would listen to the message and find out who wanted money now.

   To my surprise it was not a bill collector at all. I listened to the message 4 times before it really sank in what the woman from Walgreen's was telling me. She was trying to set up a shipping date for my first 90 day supply of Copaxone. I laughed, I cried, I laughed some more.

 It comes tomorrow!

    I can honestly say I have never been so excited about getting a shot in my entire life! I'm sure the excitement wont last long once the reality of giving myself injections every day for the rest of my life sets in, but for now I'm ecstatic and oh so thankful.

A Lesson in Patience

We all have things to learn in this world.

 Evidently right now I'm getting a lesson in Patience. Weather I want one or not.

All of my paper work for my medical assistance has been turned in, twice. Back in Aug. I was told "they" ,whoever "they" are, only had 30 days to make a decision. Well its clearly been more the 30 days, still no decision BUT I did get a nice little letter in the mail saying "they" were waiting for more of my medical records before a decision was made. Turns out "they" are a medical review board that gets to decide if I'm considered "disabled" enough to get assistance.

Assistance that only lasts for 3 months.

3 months that have clearly come and gone.

So even if it were to be approved it wont do me any good at all except to pay my hospital bill from the diagnosis.

I'm also playing the waiting game with Shared Solutions, and NORD.

They are the companies I am trying to get my meds through. Its a long process of hurry up and fill out these papers, make copies of your entire life, send them in, and wait.  The wait is torturous. Its been six weeks since I mailed my packet off and you guessed it, still waiting.

The waiting is making me crazy!

The Diagnosis...

   I started this post back in June when I got my diagnosis....and then walked away from it without finishing it...several times over. I just couldn't do it. I couldn't face it in my every day reality. I couldn't put it into words when I couldn't even wrap my mind around it. So I walked away from my blog and haven't come back until now...


Multiple Sclerosis


Multiple Sclerosis


I have Multiple Sclerosis


   I can still hear my Neurologist, Dr. G, saying those words. I'm sorry Denise but all of your MRI's are conclusive. You have multiple lesions in your brain and the one in your neck. At some point we will need to do an MRI of your spine as well to check for more lesions.

After hearing MS all I heard Dr. G say was Blah Blah Blah blahblah blah blah...

   I was glad I had someone with me but was horrified that it was my 19 year old son. What a way for a child to find out that his mom is sick. Not that I had much choice, I didn't. I was still recovering from having high dose steroid treatments, and let me just tell ya the side effects, for some people, are ugly. I'm one of the lucky ones. It was ugly. I have a love/hate relationship with steroids. They worked wonders but I felt awful for a good 2 weeks.

Here's a little history:

   It was May 21,2010. I'll never forget the day. It was my sons graduation day. It had been a pretty layed back day. We had all been out of school for a couple of weeks and just enjoying the beginning of summer at home. I had noticed some tingling in the very tips of my toes for a couple of hours. Not even anything major and honestly if I hadn't been sitting at home all day with no shoes on I probably wouldn't have even noticed it.

   As I was getting ready to leave for graduation, the side of my arm and hand, down by my pinkie finger, started to tingle. I dint think much of it at the time. Earlier in the year I had been diagnosed with Carpel Tunnel. I had been holding a camera for a while by now so I just attributed the tingling to the combination of the two.

   By the next morning both of my arms were tingling. By mid afternoon I was numb and tingling from the chest down.

   After a few days I went to a walking clinic to see what was going on. I figured a walk in would be cheaper because I don't have insurance and didn't want to waste the money for them to tell me I was OK, no big deal don't worry. After several hours in the clinic and a visit from the local vampire to draw what seemed like a gallon of blood I left with no answers and a very large bill.

  About a week later my tingling had turned into full blown numbness and my numbness had started to become increasingly uncomfortable, and I had started to lose some function in my hands. It was time for a trip to the ER.


   Its amazing how fast things happen when you walk into an ER and tell them your numb from the chest down. I didn't know what the big deal was, why was everyone freaking out? I had a full set of neck x-rays and was headed to the MRI machine within 30 minutes of walking into the hospital. Turns out things didn't continue to move that fast. After waiting what seemed like forever a nice doctor came in to tell me "we" were waiting for a neurologist. WOW wait a minute, a neurologist? Why do I need a neurologist?  Now I'm freaking out.

   When the neurologist, Dr.G, finally came in he did a few test, made some faces, and scribbled some notes, and scowled some more. I knew this couldn't be good. He said I had Transverse Myelitis, went on to explain what it was and then proceded to gloss over the fact that this "could be a sign of something else" and I needed to have some more tests done. Another MRI, this time with contrast, on my neck and one on my head along with a lumbar puncture. BUT he continued to reassure me that chances are everything would be fine.

   He told me I could do the high dose steroids if I wanted to but since it had been so long since the onset of my symptoms he didn't know if it would make alot of difference in the outcome. It was up to me. After doing some research and talking to a few people I decided to do the steroids. I'm glad I did/I wish I hadn't. Like I said before, love/hate. I swore I wouldn't ever do them again, but I will.



   I had my two other MRI's the following week after all the drama, because I don't have insurance, they wanted me to pay for it up front. Well that wasn't going to happen, I don't have that kind of money. They did the tests anyway. I found out later that because of my "diagnosis" they couldn't deny me treatment.

   My appointment with Dr. G was a week later and the rest as they say is history