Difficult converstion with neuro

[livinms]

I recently had a very bad flare back in March. I returned to work at the beginning of May, however I don't feel the same nor do I feel I can perform the same. I am able to walk but now I have a limp that doesn't seem to be going away. My entire body continues to hurt, especially my legs. I have stinging pains that affect both my eyes. Not all at once and not at the same time. My ability to process information is confusing and I'm just constantly exhausted. By mid day I just want to pass out. When I get home I just sleep. I called my neuro who has been wonderful over the years and he made suggestions. I can increase my Lyrica to a total of 200mg daily, seek additional IV Therapy(Steriods), take more MRIs to see if something was missed back in April. Which at the time showed little activity. Or get another opinion from another MS specialist.

I really do not want more medications. It's hard to work with my brain in the state it's in without being loopy on meds. I don't know about the MRIs but I know how I feel. I am still under FMLA and was told by his nurse that she can write me up for intermittent FMLA. Honestly I feel like I'm just done. I've had a 30+ year career and have been pushing through my MS since 08. That may not seem like a lot to some, but it's been a struggle.

I just don't know how to begin the conversation with my doctor that I think it's time for me to apply for disability. I don't even know if he will agree or if I would even qualify. I just don't think I can go on. I have had flares over the years and was able to bounce back. It's just not the same this time.

I'd appreciate any input as to how anyone else struggled with this and any advice you can offer. Am I jumping the gun?

[Marco]

I think you did a WONDERFUL job of describing your situation. I would suggest you print out your post and hand it to your neurologist. I often resort to the written word and find that it works well.


I am sorry that you are having residual damage from your flare up. I remember not being able to keep up with my job. I remember doing all kinds of things to try and hide my disabilities from others, but ultimately I was not able to perform my job and it was obvious to everyone, including me. I wish you well!

[jenphilly]

My doctor actually started the conversation with me when we discussed FMLA running out, short vs long term disability.... he gave me the 'let's deal with reality' type of kick in the butt. I still thought I just needed time for things to settle and I'd get back to 'normal'. For me it was really quick, but when we look back over history, I had 20 years of symptoms I ignored because I never had time to be sick with being a single mom.

But, I agree, print out your message that you posted, it sums up how you feel and what you are dealing with, asks the questions without you needing to find the words or feel any hesitation of starting the conversation. You might be surprised how supportive your doctor will be. My primary and neuro both agreed that with my career (construction management), was high stress and the worst thing for me was continuing trying to fit 30 hours into 24 hours everyday. I started with the approach of finding a part time job that was much more relaxed or low key, more something I could do to keep busy... it worked for about 2 years or so, but even part time, it was often difficult to know I had get up and go be somewhere or had to do something. So I trained my replacement and got involved in volunteer work. I can still be productive and helpful, but being volunteer gives me more leeway for times when I just can't function or deal with things.

There is no shame in admitting that you cannot work a full time job. For now, focus on getting thru the nightmare of the paperwork for long term disability and/or social security disability. Give yourself time to adjust and then decide if you think you want to try a part time job, volunteer or you have things with the family to keep yourself busy and happy!!

If you feel the way you do, please bring the topic up, if you're not comfortable asking the question, the suggestion of printing out your post is awesome!!!

Best of luck and hugs to you!

Jen

[pennstater]

Livinms,

Your post sounds familiar. Provigil for fatigue, I did try intermittent FMLA, along with work from home accommodations, and longer breaks at midday. Even pulsed IV steroid once a month. All that, and stilI had to stop.

The only thing is that your relapse wasn't that long ago, so there is a possibility you may recover more. But if you were feeling that before your relapse, you couldn't perform at work and have any life outside it, then it probably is time.

Everyone told me I would know when it is time and they were right. It is a personal decision, and you know yourself better than anyone.

I tried the accomodation route because I really wanted to stay working, but also, I knew that both SSDI and LTD would ask what accommodations were tried. But I was in a career that some could be made. For some careers, really not an option. I would have liked part time try, but I would have lost my LTD benefits and future SSDI or social security amounts would lower due to income declining.

So when the time I was needing off from work to recover from work(how ironic) started to jeopardize my job and working was causing physical decline, it was time.

If you don't want to print off your post, just start by saying that you are struggling to keep working, that your performance has been impacted which has added stress, all you do is work and sleep, and that you would like to discuss disability. Then ask for his thoughts.

I hope you feel better. Let us know how your discussion goes.

[livinms]

Thank you all for the replies and advice. I think I will print my post. Still having all the same issues and just this week received info from my upper management that I feel is totally setting me up for failure. It would be a long rant but my 30+ yrs experience is being dangled in my face. I just returned. I'm trying to heal but the challenge and responsibility being given. New office, new staff, my health....

So, still frightened, still limited, starting to flare again. This is why I emptied my medicine cabinet.

[livinms]

Difficult conversation continued...

Well, here I am again,

I don't even know what to say. afraid to end my career or afraid to take the step towards disability. I don't have the records because I wanted to push through. Thought my company was my friend. Oh my, how Jules was right. But cant take it back. My company led me to believe it would all be fine and I wanted it to be fine. I thought as long as I was doing well, I would be ok. My feeling, is when I got sick last March, the tables turned that my company felt I was no longer dedicated.

I have been blessed that thus far my husband has been able to assist in the out of pocket costs for our insurance. The pain meds, surgical procedures and overall med needs have been exhausting to our finances, but we push through.

Now, it's not just my marriage that's taking the strain, it's my job performance, pain and loss of strength at all limbs, fatigue that I didn't know existed.Is it too late for disability? To even request or the thought to ask my neuro?

[Thinkimjob]

Well, here I am again,

I don't even know what to say. afraid to end my career or afraid to take the step towards disability. I don't have the records because I wanted to push through. Thought my company was my friend. Oh my, how Jules was right. But cant take it back. My company led me to believe it would all be fine and I wanted it to be fine. I thought as long as I was doing well, I would be ok. My feeling, is when I got sick last March, the tables turned that my company felt I was no longer dedicated.

I have been blessed that thus far my husband has been able to assist in the out of pocket costs for our insurance. The pain meds, surgical procedures and overall med needs have been exhausting to our finances, but we push through.

Now, it's not just my marriage that's taking the strain, it's my job performance, pain and loss of strength at all limbs, fatigue that I didn't know existed.Is it too late for disability? To even request or the thought to ask my neuro?

You sound like you're at the end of your tether. Applying for SSDI (DSP in Australia) is no picnic, either.

I waited too long. I should have jumped before I was pushed.

I can so relate to having to take time off to recover from going to work. I loved my job. Sigh.

By that time I was so stressed, exhausted and sick I had no energy left for the coming struggles with social security.

My advice, for what it's worth, is tell your Neuro you can't do it anymore.
Good luck.

[pennstater]

Are you no longer working? If not working, and your company had LTD, probably can't file since no longer employee.

For SSDI, not too late. You have your work history, years of working with MS to support you tried. But it is time consuming. If you don't have energy, may be worth using SSDI lawyer to help.

It is a scary step. I still miss it. But it was the right decision for me. Like you, 30 year career.