needing answers

[Limbo8976]

Back in 2015 I had to have a crainiotomy for a tumor then I was told it was a rare form of ms I've been going to a ms clinic and they labeled me as cis I have 3 or 4 more of those tumor things in my head again now but I'm told that they are to small to call them the type of ms I just need help trying to find out more information on this stuff I'm going crazy know one wants to give me a job because of my medical history and I can understand but it just sucks I do anything I can to keep myself busy but my memory is starting to go as well from this stuff I just don't know what to do I've tried to talk to people but can't find anyone around here in the same position I'm stuck in for advice just tired of the waiting game sorry about the poor me story I'm just lost right now an don't know how to fix this

[KoKo]

Back in 2015 I had to have a crainiotomy for a tumor then I was told it was a rare form of ms I've been going to a ms clinic and they labeled me as cis I have 3 or 4 more of those tumor things in my head again now but I'm told that they are to small to call them the type of ms I just need help trying to find out more information on this stuff I'm going crazy know one wants to give me a job because of my medical history and I can understand but it just sucks I do anything I can to keep myself busy but my memory is starting to go as well from this stuff I just don't know what to do I've tried to talk to people but can't find anyone around here in the same position I'm stuck in for advice just tired of the waiting game sorry about the poor me story I'm just lost right now an don't know how to fix this

Hi Limbo8976 and welcome to MSW

Sounds like you've been going through some rough times and frustration, sorry to hear that.

Back in 2015 I had to have a crainiotomy for a tumor then I was told it was a rare form of ms I've been going to a ms clinic and they labeled me as cis I have 3 or 4 more of those tumor things in my head again now but I'm told that they are to small to call them the type of ms I just need help trying to find out more information on this stuff

If I understand you correctly, you had been diagnosed with a rare form of MS (tumefactive ms?)
in 2015. But now, the neuros at the MS clinic that you are going to have changed your diagnosis to CIS - is that right?

I just don't know what to do I've tried to talk to people but can't find anyone around here in the same position I'm stuck in for advice just tired of the waiting game

Are you currently waiting for test results?

I hope I'm understanding what you're saying.

Please clarify if I've read anything wrong. Thanks

Take Care

[pennstater]

I am really sorry you are going through a rough time.

On the job search, why/how do the employers find out about your medical history? Are you in a field that requires for safety reasons sone type of disclosure?

Regarding memory, have you been evaluated by a neuropsychologist? It may help to get a baseline measure and also work with an occupational therapist on compensation strategies.

Koko asked some good questions to help us understand better what is going on.

[Limbo8976]

Sorry still trying to figure this stuff out I don't get on line a lot my neuro that did my surgery said it was the rare form of ms but when I got in to the clinic they labeled it as cis cause it was all under 1event an the 1s that are in my head now are to small to say but I go in every 6 months for MRIs to have them checked .but as for me working my old job would take me back if I could pass there physical test but I can do most of it till it comes to the heat in the plant it kicks my butt and I can only take it for a couple hours and my left size just gives out on me.

I've filled out apps for other jobs an had interviews but when they ask me about the reason I left my last job I can't lie to them so I explain what happened an never get another call back an usually when they see me limping in the door its a dead give away something's wrong.I just can't sit still an let this stuff control my life I have kids and family to take care of I've seen people give up when they get bad news an I understand it but I don't want my kids to see me as someone that just excepted this an gave in to it.I'm not trying to put anyone down by any means so I hope no one reads it that way

I've fought for everything in my life and I've tried to raise my kids the same way hard work never give up on what you believe.I had to work hard to walk again and use my left arm cause the drs thought I was going to be paralized from the surgery an my kids was there to hear them say that so I pushed myself everyday thru the pain just so my kids didn't think I was giving up


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Mamabug]

...but my memory is starting to go as well from this stuff ...

I understand wanting to work as long as you are able. I wanted to, too. After 6 years of MS, and losing 3 jobs during that time due to my health, I finally went on disability (SSDI) at the age of 46.

Is applying for disability something you have considered? Are you at the point where that is an option for you?

If you have questions about it, feel free to post them here:
http://www.msworld.org/forum/forumdi...ity-Disability

[Limbo8976]

I tried for ssi and was turned down cause they said I could do a mess strenuous job i should have appealed it but my temper got the better of me I'm in the process of refileing for it but its a hard pill for me to swallow I'm scared that this will kick in faster and stuff an people will see me in a position as giving up on myself I'm my own worst enemy I don't like to ask for help my pride gets the best of me its hard for me to show my emotions in front of people even my family

I've always been the guy they call for help even to this day I put on a show so they don't see my pain its hard for me to even do this on here an I'm not talking to you guys face to face I know at some point Im gonna have to break down in front of my family but I've been the strong one all my life so I don't know how to be broke down in front of them they all tell me they know I'm in pain and that they are there for me and I know they would but like I said its hard for me to swallow my pride

my sister has rrms an has babyed her to the point she has got worse but she gave up on her self to I've helped raise her daughters an my biggest fear is that I'm gonna end up the same way an that is the last thing I want I'm sorry if that affends anyone I'm really not trying to but that is my biggest fear but I do appreciate all of you talking to me on here I feel better buy getting some of this off my chest and knowing that I'm not alone in this

[Mamabug]

Sorry I took so long to respond. I didn't notice your most recent post until today.

Does does your doctor believe that you should be eligible for SSDI? Get all the documentation that you can if you re-apply. Doctor's recommendations, medical records, how it has affected your work. Describe your symptoms, your ability to perform daily activities, etc, etc.

And I still recommend that you go to our Social Security Disability forum for advice.

I can understand you wanting to remain healthy enough to raise your own children.

[pennstater]

Limbo - I can understand your feelings. I also sometimes felt that maybe I gave in too early and was quitting when I decided I needed to go on disability. I still sometimes wonder, but when I am honest with myself, I know I can't sustain working full time.

i try to look at it that I didn't give up, but took control of my life and made the best decision to be there for my husband, my family, and myself. Not working gives me the best chance to be part of life for those I love.

Best of luck on your application.