Disability;when is it time to file?

[miracle49]

Hello, I am 48yrs old(turn 49 next month) and have been dx for 9 yrs with MS. I have been out of work for the past 2months with vertigo/dizziness and what is called hyperacusis(hightened sensitivity to sound). 2yrs ago I was out with the same thing for 4months. I also deal with cog issues that were confirmed by a neurophysc in 2010. Report said I had deficits across the board. My neuro calls them mild cog issues.

My husband is concerned and wants me to file for my disablity. He just wants me to focus on getting better.
I know that there are people out there that have worse symptoms than i do and continue to work. I start to feel guilty about this when I think about it. Thinking I'm lazy or just don't want to work.After all if their Sx are worst than mine and they are still working who am I to quit!

I was a hairstylist for 15yrs. I had to quit b/c I just could not think clearly enough to do that anymore,plus my hands shook too bad with tremors.The tremors finally did subside, but I am noticing them starting up again after all these yrs.

I know Ms is unpredictable and things could turn and get better,but there is no guarantee of that.  In the meantime we suffer financially while I sit on the fence about making a decision.

I know you can't tell me WHAT to do or make my decision for me. But I would just like to get some honest feedback. Just be straight forward I can handle it(I think).

Thanks
Miracle

[miracle49]

BTW,  a lot of my lesion burden from my understanding is located there. Which is why I have had so many instances of vertigo, and limb weakness over the course of the disease.(9yrs) I'm begining to think that this may be my new normal. These  will be some thing s I'll be talking with him about next week.

Thanks!
Miracle

[miracle49]

My neuros advice. Said copaxone was not working as well anymore. I'm thinking also because new lesions were present in the infratentorial.....(think that's right) part of my brain. Think it was 2-3 new lesions. From my understanding that's close to the brainstem.

He also says 21/2 yrs w/o a relaspe was good on copaxone.

Miracle

[doublevision1]

BTW you mentioned above that you relapsed 2 1/2 years after being on Copaxone.  Did relapsing cause you to go off of it?  I ask because I also had a relapse 2 1/2 years after being on it and from all I've read that's actually pretty good, esp because before I was on it I had relapses every few months.  I've remained on it nearly a year after the last relapse.  Just curious as to why the change for you.

[doublevision1]

Be matter of fact about it.  Explain that you are strongly considering applying for disabilty because work is becoming increasingly difficult to manage.  Give specific examples: how specific symptoms interfere with specific functions and responsibilties.  Then tell him what you need from him (letter, form, etc) If you're feeling really nervous, try practicing your end of the discussion beforehand.  If you are anxious and feeling undeserving you may come across this way.  Many many people with MS unfortunately leave the workforce early due to progressive symptoms, in fact I keep seeing over and over that unpredictable fatigue is the number one reason given for going on disability.  So it will be a request that has been made often of your neuro.  More than anyone, neuros understand the unpredictable, debilitating nature of this invisible disease.  Most if not all understand the effect it has on their patients' jobs/careers/livelihood.

[miracle49]

Thanks you guys you are really helping me. Any advice on how to bring this up to my Neuro next week?
Every time I think about it,I don't know why,but I start to get so anxious. Probably the fear of getting a "NO,I can't support your decision "

Thinking about taking my hubby and just letting him approach the subject and going from there....uuuuuuugh....what to do!

Miracle

[miracle49]

Hello Deb,
Since my symptoms seem to be so mild ;cog issues and vertigo/dizziness. I don't have a lot of mobility issues other than lately I've been having some limb weakness,but it's not dibilatating.
Therefore I'm afraid I won't get the support I need from my neuro who is an MS specialist.
I go in next week to have test done and talk about starting new med. (Gileyna).since I have been off DMD for 1 yr. My choices have some serious side-effects. I can't take interferons, I relasped after 21/2 yrs. on copaxone, Tested JCV+ after 6months on Tysabri. That scared me so I discontinued it. Neuro wasn't happy about that,said it wasn't a good reason to stop.

This is so frustrating b/c this disease is so unpredictable! So here is my question;

I'm starting to feel better from the vertigo and nausea that started in March. But it's been slow even w/IV steroids. I'm considering trying to get back to work b/f the school yr. ends.Thinking I can get a better Idea of what I can and cannot do Cognitively and physically.
Would this help or hurt me if and when I do decide to file?
Cognitive issues from what I've been reading are hard to prove.

Thanks
Miracle

[debgen]

I am 55 years old and have had MS for about 25 years. I had been an elementary special Ed. Teacher for 23 years. I was fine for a long time, but in the last few years my walking has become very difficult. I tripped a few times at school, one time I bumped my head and had to be taken to th ER by ambulance. My neuro felt it was time to go on disability. He wrote a letter and the school district put me on disability leave. I then filed for SS disability. I went on line and filled out their form. My neuro gave me a copy of my dx along with the tons of my test results (MRI's, Spinal taps,etc.) I then made an appointment with th SS Disability office. Once thre they reviewed my application and took all my medical records. I was pleasantly surprised to get a letter 3 weeks later approving me fo disability! My ad vice to you, if you feel it is time, then collect all your records and a letter fom you neuro. I must admit thaI was also feeling guilty about ding this, but I knew in my heart that
it really was time. It has been a year now and I have no regrets because I know  that my mobility problems have gotten so bad that It wouldn't be safe for me any more.
I wish you the best of luck. Please let me know if you need to know any more about applying.
Deb

[maxthecat43]

An honest talk with your neurologist may also be helpful.  At some point, he may need to write a letter about your degree of disability.  If you trust your doctor's opinion, I'd ask what he/she thinks about it.  If you don't think your doctor has a good feel for what you're actually going through, you may want to find one you can trust (for lots of reasons).  

If and when you do file, be prepared to wait.  You may also find that you have to talk to a disability judge- but that's not a bad thing.  They actually want to help.  A call to a lawyer is a good idea, because 1) they will tell you if you have a strong case, and 2) they may be able to smooth out the process a bit.--But I'd still have you discuss it frankly with your neuro first.  Getting the letter from my neurologist made all the difference.

Good luck with whatever you decide.
Tammy

[miracle49]

Sorry, I failed to add That I'm a sub teacher in Middle school (5-8 gr). I signed up right b/f I stopped doing hair. So I've been doing it for about 9 yrs. Thought it would be easier on me. But lately it's really become stressfull. When I'm stressed the cog issues really show. Some of the classes I go to I can't even do the work. It takes me a while to comprehend it,and a lot of it's in the 5th and 6th grade classes!

How much they call you IS based on how well you do the job and also teacher recommendation. I'm not trying to come up with excuses. Just giving thr facts.

Thanks
Miracle

[Needhelp16]

Filing is a long process.  People usually get turned down the first time.  It's my understanding that it's helpful to get an attorney right away.  I've also heard a person should file right away so that your sx and dx are on record.

I don't think you should feel bad or ashamed.  If you're unable to work for months at a time, I think you already have your answer.

Good luck,
Laura