Background...
I have mentioned several times on the old place where I used to post about how hard it is for me to work. I have had people encourage me along the way to start thinking in terms of disability.

My problems (in general) are not mobility - I do have some issues there and now own a cane but for the most part I get around well. My serious problems are memory / cognitive / chronic migraines / exhaustion.

I have reached a point in recent years of making countless mistakes at work, horribly embarrassing mistakes and I have done things that have long since raised eyebrows among my co-workers. In fact, I am now known for having an extremely poor memory and can only imagine what might be said of me that I don't hear.

I posted a few weeks ago about the the database that I overwrote right in the middle of a training session !!!! This was a biggy (in terms of mistakes).

It is so... past time for me to stop working - I know that, I realize it. I don't want to stop working. If I were in the medical field - I would have been forced to stop YEARS ago but thank goodness - I can't kill anybody in a non-medically related database !!!

Now here is the point of this post...
Several weeks ago - I talked to the NP at my Neuro's office about disability and she said "we don't have you diagnosed with anything" and she was very, very discouraging !!!!!

I corrected her and said "I have the following dx - chronic severe migraines, cervical spinal stenosis, Fibromyalgia and probable MS". She was totally focused on the fact that I don't have a definitive MS dx yet and she felt the other dx are not sufficient for disability.

What do I do when I know it is time - I just know - I know in my heart it is time to start the process and yet - the NP was so discouraging that I ended up crying through the entire appointment !!! After my little crying jag - she tried to get me to take more ADs which I don't need. I was having a "moment" but in general - I am rather content considering my situation. I did agree that I will have an LP this summer.

I admit that I fear not working - I have worked so long that I just can't imagine not going off to the office every day. However, it has finally reached the point that my fear of not working is less than my fear of what mistakes I will make and how sick I will be at work.

If you made it this far in reading - BLESS YOU !!!!

I identify with much of what you are saying. I want to respond, but not until I can form my thoughts--don't want simply to throw words at you!

When I was trying to get my future former neuro to write a letter for FMLA covered absence, he kept saying something frustrating like "Well, I don't know what I'd write, either you can work or you cannot." Excuse me?

When I try to work full time, I get exhausted. That fatigue affects my mental abilities, and then I make mistakes. That's not fair to my employer or my customers. I am able to work, but often (as you said) not able to work productively.

Praying for you to find a solution and peace. Don't give up.

I feel for you snoodles, truly I do.

I used to work 4 jobs. One was medical, one was VERY active, one was for MY brain and one was to have benefits. I am down to one job now, the one for the benefits. I switched to working nights, because there are no supervisors on that shift. I only have one other person there with me and I am the senior staff. It's the ONLY thing that has kept me working. No one can see me!

Having to give up my other jobs that I loved was HARD! When the cognitive stuff and the fatigue were kicking me down, it was safer to do it before I hurt someone. I can't NOT work, so I did what I had to do to protect myself and others.

I was offered the out by my neuro at the time, but I just couldn't do it. I do know that it's better to have your docs on your side. The NP is not the doc!

I am still hoping that I will get at least ONE of those jobs back...it's still waiting for me any time I feel ready!

Good luck in whatever you decide!

Getting LTD or government disability of any type is not easy. I could tell you several horror stories about what's happened to very sick people I know, and the stress that has caused them. No matter what, unless you cross every t and dot every i, and/or you get a particularly empathetic insurance company . . . it's not usually an easy road.

The most important factor is to have a specialist on your side. You must be sure that he/she is going to be willing to fight for you, and agrees that you are not capable of working. In fact, this is critical.

You do not need to have a MS (cancer, Parkinsons, ALS) dx, although that seems to help the fight considerably. I was told I was a slam-dunk, and had the support of my specialist and doctor, but it was still an extremely depressing and stressful process. The point comes down to whether your doctor is willing to stand up for you and insist that you can not work.

I know it's hard enough making the decision to begin with. It is also very upsetting to have to constantly dwell on your poor health while trying to prove your inability to work. I think that was the most upsetting part for me; when they'd call and I'd have to constantly re-live each agonizing detail about how gross I felt. There were lots of tears in those early days.

I'm sorry you are having to face this. For others (who do have a definitive dx), I found the MS Society (in Canada) extremely supportive with filling out paperwork, etc. I'm wondering if it might be worthwhile for you to talk to a lawyer regarding this, since you might not have the direct support of the MSS . . .?

Good luck and I hope that you can get your doctor firmly on board before you start down this path.

Cherie

Sorry you had a rough time with the NP. But like the others said, she's not the doc. Have you talked to him about your issues? He might be able to help you get the process started.

Prayers and best of luck to you regarding this.

Thank you so much for the responses...

Oh Blessings – I’m sorry you are hearing the same type thing and sorry that you relate to what I am saying !!!!

River – I think you and I have had very similar lives – for one thing – as I recall – it seems like somewhere way back on another forum you and I discussed our love of whitewater kayaking – I may be wrong but especially with your name. I used to do everything under the sun and was always told by my friends that I was trying to fit 3 life’s into 1 lifetime !!! I just LOVED LIFE !!! Now, like you, I am just trying to “fly under the radar at work and hold down a job”….  I am so glad the Neuro is on your side and in all honestly – mine may be with me – I have never talked to her, only the NP.


Cherie, I do know that a friend of mine has a husband who fought for 4 years and just now got his disability approved. They went through all their savings and had to hire an attorney. I am on my own and would do well to survive 3 months, let alone 4 years !!! Just saying the words out loud – “that I am realizing the need to stop working” was traumatic to me – just admitting it to anyone outside of our online group because it is a HUGE, HUGE and upsetting decision. Going through the ‘re-living” of all this mess would be painful and I hate the thoughts of that whole process but for now – I have a new mindset (see below)… 

Fin, No – I have not talked with my Neuro about this issue at all and she may have an entirely different take on my situation.

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Yesterday I had a follow-up with my Endocrinologist – I am now feeling like “fighting” again to maintain my ability to work.

She dx me with Hashimoto’s Disease, (which I was expecting) and I would like to think that the dx rules out the “probable MS”, but I think that is still an unknown. BUT… I talked to her for a long, long time about my memory/cognitive issues and those problems do go along with Hashimoto’s so it is possible and I am very hopeful that with the medication to treat this disease - at least some of the issues that I am having may get better !!! I feel hopeful – so for now, at least – I am going to hang on to my job for dear life and fight like the dickens to get my mind working better. Hashimoto’s has a lot of similar symptoms as MS.

By the way – I said above that I don’t have mobility problems – what I was meaning is that I can “generally” walk with no aid. I use a cane at night and when I first start walking I am visibly stiff and people sometimes mention it – in fact the nurse yesterday asked me if my leg had fallen asleep when she saw me trying to walk – so I guess it is a bit more than I like to realize….

Thank you again so much for you replies !!!

snoodles I wish I had a magic answer for you, I really do but unfortunately I can only offer you my story. Being sick is bad enough, but when faced with life changing situations such as not working it makes it all the worst. You have to do what is best for you, not what everybody thinks you should or shouldn't do.

I am 41 years old and 22 years after graduating high school I got my Associates Degree, plus carried over enough classes that I only need 2 semesters to finish my Bachelors. The next day I got married and 3 days later moved from small town TN to Houston. Less than a month later I was dx'd with ON then another month came the dx of RRMS. Talk about things changing fast! Here I was looking forward to starting a new career and moving on with my life and now I walk with a cane and can't drive very far, haven't been anywhere by myself in almost 6 months. Thank God for an understanding and loving dh!

I have a great neuro that right away told me to file for disability. I argued with him that I didn't want to, I didn't want to feel like I was having other people take care of me. He explained it to me this way....file as soon as you can, it might take a few tries before your given disability....also at any time you're better and able to return to work you can always stop the disabilty payments. He told me that disability is there for a reason and it is not something to be seen as shameful. Needless to say I filed, on my own (dh had to fill the papers out cause I couldn't see well enough to) I was honest about how I feel and what I go through on a daily basis. I didn't exaggerate but I did explain everything as though it was the worst day I'd ever have. It took about 3 months and I was approved first time. It was such a relief when I got the papers that I just sat and cried.

There comes a point when you have to say I've done all I can do for now and I have to put my health and well being first. It's not a sign of weakness. Don't let the NP or anybody else discourage you. Talk with your neuro or any other dr. you may see, get copies of all your records and start the process. Don't give up just hang in there and know you are doing what is right for you.

I'll apologize now for this long post that seems to have gotten off track...sometimes my fingers get very talkative!

I'll keep you in my prayers,
Susan

Dear Snoodles,

I can fully empathize with your situation. Working and not working is a big decision. Can your employer place you in a less (potential damaging) position that you would do well?

Neuro's are really skeptical about placing someone on a disability road unless there is substantial medical/clinical proof of such. I would request a referral to a neuropsych for a full mental eval. Not to be confused with a psych profile, this is clinical in nature and last about four to six hours of mental challenges of all sorts.

As an example in my case, I was referred for a neuropsych eval because of all the cognitive challenges I was experiencing. After and exhaustive testing session the neuropsych came in and we discussed the results. She concluded that I did very well for a 78 year old. This was a good indication of how badly I did on the eval as I was only 52 at the time. Get it?

Some clinical proof of this along with your physical condition could be enough for your PCP and neuro to support you in filing for disability. Check with your company HR person to verify you have short term and long term disability that would also support you financially while waiting for SSDI.

Just some thoughts based on my experience.

I understand completely what you and others are going through. In short been there-done that. I worked in an office at a great job and then started having problems with balance, typing, walking, talking and wondered what the heck!!


Fortunately I had a great family Doctor who did tests and felt it was MS. The HR manager said "you can't work so you should apply for disability" so I talked to my Doctor about it and he agreed.

I did not even have a diagnosis although I was going through so many tests. I filled out the paper work had my Doctor fill out his report and sent it in.

I got a letter back several months later that my case would be considered if I would see a psychiatrist and I would not be considered if I refused so I made and kept the appointment.

I received my SSDI check for 6 months from date of disability. I was happy to have been approved yet sad that it meant I really was considered disabled.

Snoodles, get those papers and start working on them! I am probable MS and got SSD. You don't get it due to a diagnosis, you get it due to the symptoms. And it sounds like you have some profound symptoms. Be prepared to be denied, that's what the government likes to do. But after the second denial you get to have your say in court. Just remember, you can't be working and apply. There is a great SSD forum here, just go to the drop down menu and find it.