sorry for the delay..
 

Things have been so intensely crazy.

I feel like this is a test.. whether or not I can keep my composure or crash and let this disease take over.

I definitely don't want that but dealing with this horrific loss is really far too much for A HEALTHY PERSON to handle.

My right eye muscle has been having such intense spasms that my boyfriend can see it and gets him all teary eyed.

Life lessons suck hard sometimes... :(


I have not received any IVSM, but can tell I need it, bad. Definitely will need it after the services tomorrow and wednesday, but I have no doc to prescribe it for me.

Here's what the MRI reading says... I almost don't want to see the MRI photocopies because I think it will just sadden my heart furthermore...


Findings in Brain: There are multiple cerebellar, pervnticular and subcortical white matter T2/FLAIR hyperintensities indicating demyelinating disease consistant with given history of MS. There has been progression of disease since prior exam. T2/Flair signal abnormalities also noted in the middle cerbral peduncle bilaterally. There are 2 small adjacent enhancing plaques in the right cerebellum seen on series 11 images 63 indicating active demyelination. There is a small subcortical enhancing plaque in the left parietal lobe indicating active disease.

IMPRESSION: 1. Findings consistant with active inflammatory demyelination within the right cerebellum and subcortical left parietal lobe as described.

2. Findinggs of progression of both supra and infratentorial demyelination.

Cervical Spine: There are multiple foci at multiple levels within the cervical spinal cord with abnormal T2 hyperintensities typical for demyelinating disease/ ms. In the posterior aspect of the spinal cord at the level of C4 there is a 3 mm area of enhancement indicating inflammatory demyelinating plaque. Ossesous structures are normal allignment and normal in signal characteristics. There is no central canal or nueral foraminal stenosis.

Thoracic Spine: At level of the T4 and T6 vertebral bodies within the spinal cord there is increased T2 signal intesity typical for demyelination/ms. There is no associated enhancement.

IMPRESSION: Multiple areas of demyelination within the cervical and thoracic spine. At the level of C4 vertebral body there is a small focal area of enhacenement within the spinal cord consistant with active inflammatory demyelination.

Something tells me this chicks got MS... :rolleyes:

The symptoms I am currently dealing with are these rushes in my head that go through my body, my leg muscles tighten up, I cripple over, can barely take a step, balance goes out the window, speech will worsen, I'll deal with that for about 1-2 minutes then it passes. This happens prolly 50-100 times a day. My motor skills go out thewindow when these episodes happen. It's quite a horrible feeling.

If I bend my head forward I get this weird vibration Prolly where my c4 is. Its inbetween my shoulders and shocks all the way down my spine. My fingers have been numb for about 2 years now..

After typing out my MRI I am really realizing my body is not in good shape, no wonder my insides feel so aged. I wonder what it's like to feel like a healthy 25 year old.

I wish I would have enjoyed more of my youth. and done more of the things I cannot do anymore. I have a feeling if I don't do something that will really help slow this disease down that I will be in POOOOOR shape by the time I hit 30.


Again I am so grateful for all of you and all the help you have provided me in the past 4 years. you're a great family to have that's for sure :hug::grouphug::hug::grouphug::hug:

:circlelove: (((((AynaDee))))) :circlelove:

((((Ayna Dee))))

Please don't despair. The first few years after Dx, I expected to be not walking or doing anything much at all.

12 years on, I am amazed that I got through all of that and made it this far. Working, and walking on two legs.

You will surprise yourself - and those around you with your strength. All you need is self-belief and determination.

This is not your time - you have too much to do! Smile - MS is hard, but life is harder and you can do it :)

Thank you Lyn and Sally! :hug:


Even though I am not in the best of condition now, I can still walk. and I am ever so grateful for that.

I may have severe difficulties while walking, but I am still on my feet.

I dream about working and driving. I feel that's a sign that one day I'll be able to do those things again.


I stay as positive as I can, sometimes I slip into the gray area... but usually pull myself out quickly.



I was reading about different seizures last night. Jacksonian in specific. I had to stop reading because the scrolling on the internet triggered something. Uncontrollable jerks so abrupt they were almost painful and my head and insides started feeling super not okay, so I had to stop. But what I am thinking by what I have read that these are seizures. Jacksonian and focal seizures seem to originate in the parietal lobe. Since I have damage to those areas I am thinking that's what's causing these jerking, poor motor, slurred speech and locked up muscles in my legs.

I cannot wait til I finally get a doctor so I can discuss these things.

I really don't want to have to take seizure meds but definitely can't afford more damage to those areas.

Today is the funeral for my cousin. It's going to be rough.

I hate that with MS, you can't even get a break to do the mourning process. Instead, I feel, it will just take advantage of me and get even crazieer.


Death is a horrible thing.

I should have been there for him when he was reaching out for a hand, I could have potentially prevented this.

my heart hurts more than my body.

From reading your description of your progression, mine is very mild next to yours and I am 38 now.


So sorry.

How is your walking now? Do you use any devices to walk? I'm currently feeling more comfortable and keeping my stick with me now, but my gait is usually good. I sometimes get a little off sometimes. I cannot run though.

I'm still riding my bicycle which I am grateful for. I ride better than I can walk.

I thought I'd be in diapers, not walking and almost dead:eek: Boy was I scared, but quickly found out how much it can be managed and my thing with incontinence** was a quick fix.

Hang in there, AnnaDee! :D

AynaDee,
Right after I was DX I found out I was pregnant with son #2. I lost most of my function on my right side. I also had optic neuritis and lost all my eyesight in my right eye. I thought, "How am I going to care for a new born and a 1yr old!?." My eyesight is back 20/20 with corrective lenses and functions came back on my right side. Right after my #2 was born I started on Betaseron. 20 years later and I have 3 sons and just in the past 2 years am starting to have increased problems. One thing with MS is that things always change...but don't think everything is MS. If you think something else is going on, get it checked out. Stay positive and laugh when you can. I'm great comic relief for my kids...I can laugh that I fell on my face getting off the sky lift at the amusement park 10 years ago. Well...at least after I got up and wiped all the blood off my knees (I was more embarrassed then hurt). The rest of the day the sky lift was stopped when they saw me riding it and we still laugh about it today. Keep smiling and I'll say a prayer for you.

Can your new doctor, I assume you are getting a new one, get your records from the one who had to leave??

Ayna Dee

Something else to be careful with is the internet - it can be your best friend, but it can also be your worst enemy - and scare the heck out of you. I know that from reading the stuff I find on the net that I fit the criteria for a bazillion things.

'I was reading about different seizures last night. Jacksonian in specific. I had to stop reading because the scrolling on the internet triggered something.'

Not saying that you don't have these issues, but has it been dx'd by your doc? I know I am guilty of hitting Google every time something weird happens - usually because I can't get in to see a doctor.

On a very serious note, did your cousin take his own life? If so, there is nothing you could have done to prevent it. The guilt loved ones feel is all-consuming, but please remember, this was the only option they saw as viable at the time. If you were able to stop it this time, it was only a matter of time until it happened again. I am so sorry for your loss.

Suicide is a very selfish thing - and I say this only because the person suffering is unable to see past their pain and see the pain that they are inflicting on others.