Another Doctor’s Visit and MC

Well, I went back to the doctor for a check up after Ampyra.  I wore a dress as I had had an important meeting at work.  So peach sheath with eyelet lace top, white shawl, pearls, the spectral leg and palomino tie shoes.  She told me how good I looked and loved the shoes.  I don’t mind them.  She also assured me that I looked fine.  I hate feeling odd and spastic. In fact, she said I looked great.

My walking is improved.  We knew that already.  She was really happy. I have had no adverse reaction to the drug.  I just read someone else’s blog about drug costs.  I was originally not covered for Ampyra and my insurance blithely told me $1300 – $1500 a month.  I had to go on Affordable care.  I am covered!  But here is what’s odd.  I make more money than I ever have but drug company now is subsidizing!

Now, I have insurance so we can discuss Copaxone.  She told me which I  knew it would be off label, shots ( I don’t do needles) and it’s only been shown to be effective  in men.  Our decision?  No.

Next we discussed my scans.  Again, due to Affordable care I can afford them.  I was dreading this as my hands are going.  Right now I am not typing this at my regular, typical speed.  Forget my already bad handwriting.  There are times I can’t use my fork properly.  This annoys me as growing up I was told “don’t shovel”.  My husband has to put up my hair. And my left foot feels like a club.  The MRI says NOTHING has changed.  Now this makes no sense.  I used to walk into that office with heels.  I didn’t wear spectral leg all the time nor a cane!

Our feeling is that’s why we call it MC for my condition.  We don’t think it’s the other.  I believe this first ran amok in my system when I had no job or dental insurance and a hole in my mouth and subsequent infection.  I eventually had work done.  And recently, the bridge ( same tooth) was really loose.  I was bleeding through my teeth there.  I had a cavity filled.  The dentist was going to remove the bridge and remains of the tooth.  His words  when he went in, “It’s very mushy”  Lots and lots of decay which means poison in my body!  I have to go to the oral surgeon for this and my wisdom tooth removal.  I am supposed to do it at the same time.  More drugs in my future.  I have a meeting with the head of my company July 31 and don’t want to take chances so will schedule right after.  We think this will help me improve.  I am also going to be more aggressive in eating clean foods and the exercise.     Improvement will and can happen.

Aftermath of the Doctor’s Visit

What can I say?  I never like going to the neurologist as I find it a very draining experience. I hate seeing people worse off  than  me.   She is always telling me how I am not doing badly. Last time she said I was more spiritual.  Don’t get me wrong.  She is nice and listens to me.  Not sure, if she really hears me.  When we first started, she said everything wasn’t all about the disease/condition.  She was for me and my kitten heels.  The last few years the exams have been cursory.  My husband thought that once I wasn’t participating in research drugs she wasn’t really interested in me.

I have had a bad few weeks. Not enough walking or exercise due to bad winter.    I am never in pain except for when I fall.  My knee has been hurting me and it’s not a “fall” hurt.  I have been barely able to walk.  Well, I did turn a corner last Thursday, even though I did fall but I walked 11,500 steps.  Still, it’s been a real struggle.  I hate the way I am walking and looking.  I knew this time wasn’t going to be good.

I had the very sympathetic look – so sorry you are falling more often with the unspoken words what do you expect?

Bad news – we expect your symptoms to worsen in your already effected area but it appears things have changed and we need to look.  Yup, my left leg and my fingers are going.  And did I know that I have arthritis in my spine?  No, I didn’t and it looks like it might be getting worse?

Oh and the falling?  You may not want to hear this but maybe bilateral support?  As I was asking, can you say it in English?  My husband was saying, she’s not going for it.  Crutches!!!  Is she f’ing kidding??

And drugs?  She wants me to take the Bac more regularly.  I needed bloods for the Ampyra.  I hate needles.  Once a doctor told me he needed blood and I said needles?  He said, well I am not a vampire.  I thought this visit was going to be about other drugs.  Nope, she wants MRIs.  Luckily, with my change in insurance, they are only $75.  Last time, it took me almost two years to pay them off. Glutathione?  Complementary treatment.  I did get scrips for a new spectral leg though.

I also feel out of balance, literally and figuratively.  I thought I was finally getting to a place where I didn’t have to stress about buying “stuff”.  As I approach my milestone year, I wanted to stop settling.  I like being able to buy the Hourglass blush and highlighter.  I wanted to upgrade my car.  Material, superficial stuff I know.  And I know walking is more important.  I guess I just want to live as if this isn’t happening.

Oh, and the neurologist is not covered under my new insurance.  She wants to see me in about a month.  Look at it this way, I’ll be getting a larger tax refund next year.

So, what do I want to do about all this?  Fight back.  Restart and commit to the physical therapy, get in more walking (read lurching) and be more aggressive foodwise. Neuro says one of her patients gets good results but it’s not a good idea, just be moderate.  I am going with my plan and let’s see if I can have improvements by next time.  I am betting on me.  I hope to blog about it daily.  We’ll see.

Visiting the Doctor

Yes, sometimes I write about what’s going on condition-wise.  Tomorrow, I have a visit to the neurologist.  I haven’t been since July.  She likes to see me every three months.  I delayed for several reasons.  I thought I was  going to be an employee so I would have different insurance.  I was really hoping that by changing the way I eat, I would have positive change.  And frankly, I get tired and depressed hearing about the natural progression of the “disease”.  Last time, she told me I was more spiritual.  My unspoken response – “BS”

Well, tomorrow I am going back.  I am worse.  That’s another thing I don’t like, her denial that I am getting worse. It’s just natural.  One of the things we have been discussing is medication.  She has prescribed Ampyra for me but my former insurance didn’t cover it.  It costs $1300 – 1800 a month.  Now, I can get it for $60.  It works in 60% of the people.  I should be able to walk longer and faster.  I am terrified of drugs.  Also,  she can now prescribe meds that work on relapsing.  However, I have seen for some reason going that route only works for men.

In the meantime, I fell getting off subway on Thursday.  It’s getting harder and harder for me to commute.  My left leg is going.  On a positive note I should be able to get a better brace a.k.a. spectral leg for my right leg.  A new one may allow me to wear nicer shoes which will help my self – esteem.  Donna will know I hate, hate wearing shoes like the groundhog (inside reference) I don’t want to give up but struggling into work isn’t working for me. I like what I do but really don’t want to be there.  I took cabs last week except for the day I fell.  I can’t afford that.  Commutation already is hundreds a month.  I needed a cane to walk in my own tiny house this weekend.  Husband had a thought which may be valid.  I am a woman of a certain age and have been taking Estroven for years.  I forgot to buy some and have been without for a week.  Hot flashes and me don’t mix well.  Back on it so hopefully it will sort some of this out.  Also, my work stress has been through roof .  That’s a topic for another day.

Tomorrow we have a late appointment which means we see all the people who can’t even sit up being wheeled in, beyond depressing, the ghost of Christmas future.

Not optimistic.  Guess I can have a down day or so.