MRI results in! And social security stuff..
 

Hey everyone! I hope you're all doing well and hopefully avoiding this heat/humidity!

My results are in from my mri!
It says in all areas (brain, cervical and spinal cord) there is disease progression. Itsaid there are multiple areas of demyelination and some lesions proved to be active lesions.

My c4 (somewhere in my spinal cord, right?) Has a pretty bad section, says its 3mm.

I havent got to see the mri but this is what the reading says.

It also mentions something about alot of T2 cells were found (what is T2?)

Super unfortunate news...
That super awesome new neuro of mine that ordered these tests had to resign for family issues that he has to go take care of out of country. So back to no neuro. I dont even get to tLk to him bout the results. Sucks.

Social security sent me a letter saying they need further evaluation of me and have scheduled an appt with a psychologist...

Why a psychologist? Do they think im crazy or something? Have any of you been sent to one per social security?

Everything is really hard right now.. My cousin passed away this morning. Tryimg not to get all worked up as I know that will open the ms floodgates. My heart is very heavy and sad about this.

sorry yo are having a tough time, especially losing your cousin.:hug:
the c4 refers to your 4th cervical vertebrae, no sure hwat the t2 cells would be, unless they mean 2nd thoracic vertebrae. can u put exactly what the mri says?

also what are the symptoms you are dealing with?

Sorry you are going through all of this. Seeing a psychologist, doesn't mean one is crazy, nor thought of as crazy, sorry to read you take it like that.

I'm sure, it's typical Social security protocol.

Hi Aynadee.

T1 and T2 in MRI speak has to do with weight and relaxation time of protons. See here in frame #4: http://eradiology.bidmc.harvard.edu/...l/malhotra.pdf

ANN

So sorry for the loss of your dear Cousin, Ayna. :(
And for the carpy MRI reading. The only good thing I see is,
at least, you have received answers for your Illness and SSD is
Impressed.

It's not unusual for a Psych test. MS often gives us a little brain
fog and keeps us from doing our job well. You can sometimes
work from a wheel chair, but not if you cannot keep up with
the quick thought processes it takes to do a job well.

Good wishes and let us know how it is going for you.:hug:

thanks, that document is very helpful :Thanx:

So sorry to hear about your cousin. Saying some prayers for you and your family.:hug:

I had to go to a psychologist for my SS. They're testing your mental stability as well was cognition (at least that's what they did on mine). It's kind of like a mini neuropsych testing. I didn't pass all of the tests and some I did quite poorly on. It helps SS determine that you are unable to work. When I filed for SSDI, I found that a lot of the questions and such were actually geared towards people with injuries and/or psychological conditions. It didn't seem to apply to those that had an illness, chronic or terminal. They psychological testing really isn't that bad and will give you some insight as well.

That really sucks your "new" neuro is leaving the country for family reasons. I'm so sorry to hear this. You finally got in to one and now look what happened. I hope you find another one soon. Get a copy of all of your records, including your MRIs, and bring them to the new neuro.

Since you have some active lesions did they treat you with IVSM? I hope you start feeling better soon.:hug:

C4 lesion isn't good however, I "had" one right about there myself on my 1st for being diagnosed MRI. Copaxone made it go away. Wish my bod didn't adjust to Copaxone cause it got me going strong for 3 yrs.

Test (if you can feel your arms hands fingers) - slowly bow your head/neck down to chest. Notice tingling in hands fingers or arms as neck's bent? I didn't at first.

Hope you're doing good as can be with all you mentioned.

I had to go thru a psych test to get my ssdi. Its for your cog fog etc. Its no biggie. Just dont go in there dressed to the T with hair all perfect and all makeup on (sorry, dont you if your m/f). My psych dr looked at all that.

My neuro psych test was one of the best things for me and my SSD application. And it had a lot of weight as far as the final decision. He was able o tell from where the lesion was what kind of disability it would give me and the kind of cognition problems it would have and how that would deal with my job as an RN.

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.

I can't believe how much healthier I am since I got my SSD and didn't have the worries of work and financial things. Granted, SSD was only about 40% of my salary but I knew it would be there every month. I could then concentrate on helping ME!!!

What makes you think it is fact the person cannot see the pain they are inflicting on others? Of course they do. However the despair is so great that they do it anyways.

Hi Eric

You are probably right - I guess I would just like to think that. I have never been in that dark a place - I have only seen the devastation that comes with the aftermath. Somehow it seems easier to cope with that way.

Whichever way it goes - I think the final decision goes beyond rational choice - and their pain is their primary focus, and indeed, sometimes it is a very vengeful thing.

EricP-- I should probably be using a cane at least. My doctor has written on all my stuff to send a wheelchair down for me, but I refuse it.

I feel (which is probably kinda crazy) that a device will enable this disease to take over. I use what I can. The walls, countertops, and love being barefoot because I can dig my toes into the ground when I am losing the balance (my feet are numb anyways so I can walk on any surface without it bothering me).


My neuro thinks that I am having seizures, so that's why I was researching it. Since I can't see a doc for a while, I want to have things ready to discuss with a new neuro when that time comes.

Since I have been out of work, my fatigue isn't AS bad. It's still there everyday, but not as bad as when I was working 10-6, going home and going straight to bed.

I was hoping the progression would slow down being out of work, but it just keeps on going.

When I was dxd 4 years ago I couldn't walk at all, I had no function to my right side, no use of my hand or leg on that side. Couldn't see out of my right eye. Vertigo so bad I was throwing up everyday for hours. Peeing myself cuz I couldn't get to the bathroom quick enough. Losing control of my bowls at work. That has improved since then, so I do understand this disease takes breaks and some areas can heal.

But while those areas healed, the disease decided to work on other areas of my CNS. So now I have difficulties with both sides.

I have aspirated on my beverages so many times. The last time I didn't think I was going to make it. It was at work and scared everyone because I had been without oxygen for so long I was turning blue. I couldn't breathe, not even a forced breath. Vision started to go out. It was pretty scary. My manager started to call an ambulance and at that moment (I must have bent forward or something) all the water I had inhaled rushed out of my nose and mouth. Had 5 full grown men in tears. They were pretty scared by this as well.

My memory seems to be getting worse by the day. I have been so good with my directions since I was a kid. We were on our way out to my mom yesterday and I couldn't seem to figure out how to tell my boyfriend how to get out there. It was a bothersome situation. I have know where my mom lives for 15 years and 6 different ways of getting out there but was so confused on where I was. Definitely slippin.

My cousin did take his life. While I know it was selfish, I cannot be mad at him. It hurts me so much that he was in such a dark, scary, cold, lonely place.

You have been fortunate Lynn to have never been in this place before.

Some people can pull themselves out of it, while others find the only way out is to end things. Imagine how horrible of a feeling that would be.

He was a compassionate, kind, caring soul that had love for everyone around him, he just forgot to give himself the love too.

AynaDee, so sorry to hear that your cousin was in so much pain that he felt leaving would be better...
i HAVE been in that place...it's not that you don't know you'll cause loved ones pain...it's that you feel they'd be better off with you gone. I know it's irrational, but when you are in such despair, and feel that there is no way out (another irrational thought, I know), then death seems like the only choice.

I hope that you understand that he was trying to end the horrible suffering he was experiencing...:hug::hug:

Thanks Debbie. thats what hurts the most.. Was that he was that deep into despair. We shouldve all been there for him and shown him the love he needed.

My heart will always have a huge chunk missing. Everytime I would see him the very first thing to come out of his mouth was "Ana, how are you feelin?" Normally I hate when people ask me that, its like theyre obligated, but with him you could hear the compassion and concern in his voice.

Things will never be the same. My heart will always hurt for him. Im glad he left me with the memories, but id rather him be walkin this earth with us.

It just sucks to think of how sad and lonely he was to make such a decision :(

Hi Ayna Dee

I am so very sorry for your loss - I hope that you didn't think I was being insensitive in any way - either regarding your loss, or your health.

I am hearing the pain in your post, and feel terrible for you.

No need to feel terrible for me Lyn, we're all fighting the same battle.. :hug:

I'm sorry to hear about the loss of your cousin. :( I will keep you and your family in my prayers.

MS is such a funny disease. It can be real active for a while and then slow down and then pick back up again. It's so unpredictable and you just never know what's coming next or what symptom is going to start up or stop.

Sometimes our brains rewire themselves and we're able to do things "normally". My right hand is severely impaired. According to testing, I should not be able to use it for much of anything. Apparently, I am 97% impaired with my right hand and I'm right-hand dominant. :eek: However, I use it just like a normal person for the most part - when the tremors are bad I can't do some tasks. So I do believe that our brains can rewire some things.

You have really had a tough time with your MS and I'm so sorry. I feel bad as you are so young, only a couple of years older than my daughters. I know this must be so hard on you being so young. I can only imagine what my girls would be going through at 23 and almost 22 and having MS. It saddens me to think of what you must be going through right now. I hope that once you get in to the new neuro they are able to help you so that maybe they can slow down the progression.

Hang in there Anya!:hug::hug:

I have a special knowledge of your feelings Ayna, since my Dear
Cousin, also took his own life. I loved him dearly and wish I had
talked to him about his pain, but, at the time, felt that I would
be intruding on his privacy. He should have known that I/we
were behind him.:(:(:(

Thanks Tkirk:hug:

MS has strengthened my soul, not my body, but my soul. It has taught me alot. I've learned patience. and optimism.

I've read that when theres an area a message cant get through, that the body rewires that section so it can travel a different route. Thats amazing.

I need to start taking care of my soul, and watch my self thoughts. As those thoughts are whats feeding the body.. I forget sometimes and spiral into a slew of negative, hateful thoughts, and that's just not right.


SallyC-- I am so sorry to hear of the same situation for your cousin.. I wish they would've known we were there for them.. Maybe they did and just didn't feel they could come out of the dark hole they had fallen into. From this horrible experience, we learn to come together. At least I hope. Things are very rough and jagged right now. It's time for the anger part of mourning to kick in.

I am going over to their house today to hang with his brother and try to get my aunt out of her room and eat something. I cant stop worrying about them, especially her mental/physical health.

I just wish all the pain to go away.

Thank you all for the support. It lightens my heart a lil bit and thats really what I need right now :hug::grouphug::hug::grouphug:

So sorry for your loss..............
 

When I get where I’m going…
on the far side of the sky;
the first thing that I’m going to do
is spread my wings and fly.
I’m going to land beside a lion
and run my fingers through his mane.
Or I might find out what it’s like
to ride a drop of rain.
When I get where I’m going,
there’ll be only happy tears.
I will shed the sins and struggles
I have carried all these years.
And I’ll leave my heart wide open;
I will love and have no fear.
When I get where I’m going,
don’t cry for me down here.

I had a buddy of mine do it to himself *edit*

*edit*I literally cried for days after I heard the news and it was because of thinking of just how someone could go through with it....so much despair and hopelessness that nothing else matters except getting rid of the mental pain.
I don't condemn anyone who commits suicide....they can't help it as much as we, with MS, can help it.

I keep thinking to myself how far and despaired one must go to actually go through with a suicide and I can't even grasp how far down you have to go...it makes me shocked. Even I, dealing with this crappy disease and it's crap it does to me, no GF or doing the job I loved doing(construction) and basically seeing a lot of what I worked for, go bye bye. Even I am not even close to even thinking about killing myself. I love my life despite this crap, I have good support, people smile at me instead of think of me as disgusting I ride my bike, I can still walk, I am SO glad to know more of the MS community and how close knit they are and most of all.....I have lots of hope and will not give up....I owe it to the friends and my family for this attitude, without them, I'd be down that dark road myself I suspect.

With Tim(my buddy) no one knew how far down he went and they couldn't be there for him....I always wished he would of gave in and reached out to someone, because sometimes a shoulder to lend, is all that it is needed to bring someone back out of the darkness. He just needed to reach out, but he didn't... RIP, my friend.

Deepest sympathy to all who have lost someone to suicide.

I do just need to intervene here and gently remind that we actually have a very specific guideline about suicidal discussion, asking that it be very limited (no graphic descriptions or other triggering info) and that it preferably be kept to the special forum we have http://neurotalk.psychcentral.com/forum29.html
Even there, although open discussion is allowed, we ask that members please be very sensitive, and not post graphic/triggering details.

Thanks for understanding

Awww crap! I try to keep from breaking the rules(sometimes hard to do lol) sorry bout that.... Ok I got it....thanks.

AnyDee....I totally lost a post due to you, due to a login time out....it was that long of a post...:rolleyes: I don't feel like re doing it. gah I hate that when it happens.

This is so beautiful! Chills and tears! I needed to read this so very very much!! :hug:

It's by country singer BRAD PAISLEY -- song LYRICS
"When I Get Where I'm Going"
(feat. Dolly Parton)

http://www.azlyrics.com/lyrics/bradp...reimgoing.html


*song lyrics might be copyrighted, so a link to the source is always a good idea*