My Neuro didn't file my Disibility papers on time. Now I am Messed UP!
 

I just want to vent a bit, I am in a major flare right now that has taken me out of work and put me on my employers short term disability. Apparently this disibability company only approves people for a week or 2 at a time. They set dates that you can be covered up until and then they want forms from your doctors that state that you are still unable to work.......

Well, back on August 13th they faxed a form for my neuro to fill out stating that they need info to keep my claim going past August 19th, I then talked to my doc and she said that they would take care of it, it happens all the time.

I did get a check last Wednesday and also talked to my doc that day, she said no prob on faxing the new form..............

WELL, today is the 18th and I emailed the insurance company and they told me that nothing was received from my doctor yet so I called the office and sure enough they told me that they have a girl that comes in and does the forms once a week and that she had NOT done mine.........

I am furious at this, I had the form there on the 13th to avoid this happening, NOW I will not get paid until they fax the form in, BUT it takes 5 to 6 working days to process the form PLUS it will take 3 days in the mail to get to me............Basically i haver approx 2 weeks until I get paid again.........Don't these people realize we need MONEY to live, I have bills to pay...I am SO mad, I was on the phone all day today with no results and now I have to be on the phone all day tomrrow too?

I also have a form there so the insurance,(different company) can pay my mortage, I guess I will have to be on the phone every day to get THAT one sent also?

I am in a major flare that some of my symproms have been subsiding and almost going away, but NOW since all this stress hit me I am getting the symptoms back again.............I thought doctors were supposed to HELP us.........NOT to mention I will be on this insurance longer because of all the undue stress.........

Well, thanks for letting me vent, I have no one to talk to about this all the doctors offices are closed for the day...........

es any one have any suesstions on how to handle it better?

I have tried it all, even enclosed an stamped addressed envelope......

I am sick of bein a nice guy, it is getting me NOWHERE.....

Joe

sorry to hear this, what is the neuro's answer as to why it isnt getting done.

if neuro says he sent it out I would ask him to fill the papers in again and you will pick them up and send it priority mail and with delivery confirmation....

I think I would let doc know how this is effecting you and how the stress is not helping this flare,

with the delivery confirmation number you can see what day and time it was delivered

I hope this gets resolved

am calling tomorrow and speaking to the PA, neuro is out this week, I'll see if the PA can do it, but boy is she going to get an earfull from me!

Thanks weegot5kiz for the reply

Joe

i'm really sorry about this.
her office needs a better manager.

with the dr out lets hope you can actually talk to the PA.
short of being there in person in the middle of a flare i don't know what you can do. maybe send a friend or family member to make sure it gets done.

maybe the insurance comp can overnite you the check and take the amt off the check.

please try to stay calm. i know it's so hard but you don't need anymore stress.

i hope it gets resolved as quickly as possible.
please keep up in the loop.

I also hope this gets sorted out soon. You've gotten some good advice. :hug:

What a stupid system . . . they have to complete new forms every two weeks?? :rolleyes: Here we are on STD UNTIL our doc authorizes us to go back to work . . . otherwise everything is status quo.

With the much longer-term forms here (every year or two), all I ever had to do was get them re-signed and re-dated whenever they asked . . . the doc didn't have to fill out the whole form again though. :confused: Would your insurance company accept that arrangement, if your health status has not changed?

I think Frank has offered some good advice. It sounds like the only way to be sure this is getting done is to mail it yourself.

It's hard not to be stressed when there are financial worries. Too many of us have had to face those at one time or another, it seems. :( If there is nothing you can do to change things (when they go wrong), try not to let it upset you too much. Save your energy for things where you can affect a change. :hug:

Cherie

BTW, are you finding stress affects you much worse now? That happened to me, especially after those TM attacks, and I used to THRIVE on stress.

That's been one thing making me hedge on filing for disability. My neuro's office is VERY lax on things like that, and I can just see them not getting the paperwork in on time. I'm afraid it would count against me if my application were to be cancelled because of missing the deadline and I tried again.

Another example of the system making it harder for the people for whom it's already hard enough.

Well, another example of some stressfull things, I am up ealy to get a jump on it, I will take a nap later....

Thanks for all the advice........Cherie, I will try not to stress over this.

Joe

I would sit and talk to the office manager if I were you. go on and on, about how you know there office is busy and you think she does an amazing job at keeping things on track, but when things fall through the crack like YOUR paperwork, it means you DONT EAT for two weeks, and DONT have meds for 2 weeks, and so on. Ask her if there is anything you can do to help speed things along, or make it easier in the future. try to meet the girl who does your papers. if you become personal to them, they are less likely to forget you, or shove your papers to the back. Send her flowers or candy or a thank you card for remembering you.

I KNOW you want to drive to her office to haul off and smack her, but that wont prompt her in the future. being someone she thinks highly of will.

I hope you can call the insurance company and plead your case, or ask the office manager to plead for you, since they are the ones that dropped the ball. :hug:

AAARRRRRRGGGGG!!! :mad:

Good luck Joe, on getting this straightened out...SOON!!:hug:

I went down to the office this morning, by 11:00 AM I got a call that BOTH my forms, one for the disability and the other for my mortgage insurance were filled out and faxed.......

I won't get paid for about 2 weeks but I should get 3 weeks worth of payments, I have enough money to get us by BARELY.....

I don't know if they will be this way on future forms but I definately WILL be up on the office all the time when I need them to fill out forms.

Yea Cherie, it is messed up that the insurance company needs to keep checking that I am still unable to work every 2 weeks...........

Good news is that my numbness from my chest down is starting to subside, the pain I had in my shoulder blade has moved down to my right wrist........I must be on the UPswing from this flare, I foresee a few more weeks and hopefully I will be 75% better........:-)

What does your calendar say as to when I was going to get better....

i know that when I start the Tysabri I will most likely be almost 100% because that is still about a month away from happenning....

Thanks for all your help Cherie, it has made SO much of a difference and has kept me going throughout this......:-)

Thanks everyone else for your input on this insurance issue....

This board is GREAT...:-)

Thanks again!

Joe

Am glad to hear things are looking up MS and money, just be careful on feeling good dont over do it too soon....plus keep track of the cash and your taxes you might have to pay on it

every two weeks what if you got a FMLA form filled out would that make a diff? I pretty sure the letters go in that order I believe its the Family medical leave act.

hope everything works out well and maybe with any luck the cash will show up sooner

Well, you are at about 7 weeks now, and right on schedule for recovery. :)

Things may fluctuate a bit, and you may even have a couple-of-day-NEW symptoms that crop up over this next 3 or 4 weeks, but don't worry too much about that. It will be when you hit 10 - 12 weeks (about a month from now) that you should feel as good as you ever could have dreamed possible in July.

I am so relieved that you followed the same pattern as me, because we know the results aren't always so positive. Every time I talk someone through this, I pray they will not be one of the unfortunate few that never see improvement. From my experience . . . that you are improving exactly as I did, has always indicated that the person will continue to pretty much follow the same pattern to the end.

There may be some left-over symptoms too (probably nothing TOO debilitating), Joe . . . but you cam heal more as each month passes too (bit, by bit).

I'm glad I could help, and that you kept faith in "the process". It made 'coaching' you much easier, I can tell you that!! (The men are always easier. ;))

Good luck with the financial situation, and with transitioning back to work when you are ready.

Cherie

hahahaha, the men are easier huh........thats a good one Cherie...

I am happy that I am coming along just as you thought.......When do you think I could go back to work.......I know that even if I FEEL better I should wait a while to make SURE I am out of this, am I correct?

Thanks again for helping this "easy" guy.....LOL

:-)
Joe

Hey! I'm glad you're getting better. Your mood's definitely improved. Sucks about the neuro's office and the paperwork. You're absolutely right to stay on top of them for getting forms filled out.

Keep improving! Being on the upswing certainly has a good ring to it. :)

;)

Well, I had quite different results after my second big TM attack then after my first, and it really depends on how you are feeling and how hard your job is (for the symptoms you still have).

Either way, I would suggest you PLAN a progressive back-to-work program. What that might mean is that as soon as you feel you can take things on, first try to achieve some routine at home.

What I did was force myself to get up early for a week, just like I would if I had to go back to work that week. I disciplined myself to 2 - 4 hrs of a routine every day, doing things that were similar to my job (like "researching" or "organizing"). In other words, I pretended I was working.

If I did ok with that after a few days, I organized with my employer to actually work two or three 4-hr days the next week. If that was ok, I moved to four 6-hr days the following week . . . etc.

You will not have the stamina that you used to, at least initially. Things will tire you out much easier, and depending on how quickly you jump back in to full-time, it might be all you accomplish in a day for 3 or 4 weeks.

It's hard to guess any of this, cause every time it will be a little different. Just don't lock yourself into more than you can handle fairly easily, but keep taking one step ahead.

You are "out of this" though, Joe. This should be the only time you ever go through anything as this severe again too. I just got lucky (NOT!) and experienced it more then once . . . but that is very rare.

Cherie

Hi Cherie,

My right hand and arm are still messed up and I am still numb in BOTH hands with pain in my right wrist and ahoulder blade, it does seem like it is going away in reverse of the way it came on, if this is the case I might have a couple more weeks or longer. My job is VERY stressful and I don't want to jump back into it without being 110%. I do believe it was stress that caused this from my job in the first place, I have been thinking about long term disability because the printing industry is so stressful and I do not want this happinng again but that is a THOUGHT at this point.

I would love to stay on the short term disability for just a while longer until I am TOTALLY ready to take on the stress factor again....thanks Cherie for all your help you are giving me through this....

And Gazelle, thank you also for the words of encouragement.

weegot5kiz, SallyC, NurseNancy, FinLady, Dejibo and Blessings2You, (I hope I didn't forget anyone), thanks to all of you too for your input, this board is SO great.....:-)

Joe

You are welcome.

It was most likely an ignored infection that brought this on, which usually happens when we are very stressed. That or jarring your spine. Those are two things we need to avoid; infection/sickness & taxing the spine in any way.

I agree that you should not try to get back into the game until you feel you are ready. It's once you do feel reasonably well that you would plan to PROGRESSIVELY get back to work with a back-to-work PLAN. All I'm really trying to say is that unless you are 75%+ when you try to go back to work, you will have a very hard time adapting if you try to go back right away to the 9 - 5 routine from the get-go. Do a shorter week, do shorter days . . . don't try to do a full week for the first few.

I think it was about 10 weeks before I was feeling about 65% pre-MS normal after the first TM attack, but I was back to work much sooner then that. I needed to work though, so I didn't have much choice, plus I was in denial about the MS at that point. I think I got back to 90% normal by the end of 18 months . . . and that is all I EVER got back. I didn't have any other notable attacks for another 12 yrs though, so this isn't necessarily a turning point for you.

After the second attack like this, I never got back to the office. I was able to work for another 2 yrs, but I did it at home and on flextime. I didn't heal so well after that attack though, and was left with considerable damage. It wasn't until I got on LDN that I would say I regained about 65% of my life back . . . but I was probably only at 30% for the two years prior.

Only you know how you are feeling, and whether you feel you can cope . . . but you need your neuro and doctors 100% support if you go off on LTD. They will do objective testing, and you will need to show even them that you are "disabled" to the point that you can't work. This is easier to do in the short-term (STD) then it is in the longer term, especially since you will improve.

My LTD covers me for life ~ well at least till I am 65 yrs old. I don't know about your coverage (hope it is for life?!) but a lot of the plans I've heard of in the US only cover for 2 yrs. Also, you need to find out what your LTD % coverage is, and whether it is taxable. I paid my own premiums, so mine is not taxable . . . but if your employer pays your premiums, it is. So, if you get 65% of your wages while on LTD (it is not the same as STD), then you may have to pay taxes too.

If you improve enough to want to work again, your company only has to hold your job open for X amount of time. If you improve to the point that your neuro says you can work, you may find yourself having to look for another job in one or two years. The next job will NOT LTD coverage most likely either, because you have a pre-existing condition . . .

Anyway . . . those are more long-term considerations . . . but things to look into.

Cherie

I can't believe that you have to go through all that while still recovering from a major attack. I am sorry that the people did not send the form right away.

You have received good advice so I am just adding my emotional support to you. Definitely they should 'overnite' (FedEx overnight) the check and any support letter to you or to the insurance companies.

Ask the doctor to have a 'priority' placed on any such documents.

Now, try to relax and tackle just one problem at a time! :hug:

BTW, I just wanted to clarify what I meant in my last posting, about being i.e.: "65%", "90%", "30%" normal at certain periods along the way.

What I am really talking about by those percentages, is my personal assessment of my "Quality of Life", compared to before the event . . . NOT overall disability level.

There are lots of people who would have an ongoing EDSS of 7 or so (which I only ever got up to during the TM attack period), and they can still work. They use a wheelchair, or there job does not require certain abilities to perform . . . so they CAN stay in the workforce.

Someone else might only have fatigue and cognitive challenges as their debilitating symptoms (no other notable physical symptoms most of the time), and they CAN'T work because of those things.

Since being on LDN, I reduced my EDSS one whole point to 4.5. There are lots of people who can continue working with that disability level, and others who have to stop working at an EDSS of 2.0. It really depends on how disruptive the symptoms are (whether we can make it through the day without a long nap, etc.), and if we are having more regular relapses (dependability, etc.), that determines whether we can continue to work or not.

Cherie

Hi Cherie,

My STD is 60% or 65% of my pay, I don't know if I have LTD through work, that would come from SSDI, I am still messed up and feel like I could NOT go back to work even a litle bit, I see my neuro Sept 15th to finalize my Tysabri treatment and I hope to get started on it soon after that.

I am also going to talk about the untreated infection I might have had that caused this......that was a new one for me, I didn't know that one.....

I am still as messed up as I was last week, I was hoping to be a BIT better but I am not........i am loking forward to feeling better after the Tysabri, its a possibility that I MAY have more energy..........as of right NOW I have none.......

Thanks again Cherie

Joe

Hi Joe,

Sorry to hear you are not feeling better this week. :hug:

Every spinal lesion attack for me has started with some kind of infection. The first TM attack was a virus (with a BAD fever), the second was an untreated bladder -> kidney infection, and the third stir up was due to an untreated tooth infection. That particular infection lead me into a series of many infections, including bronchitis, bacterial, bladder . . . until finally I had the tooth pulled.

I imagine spinal lesions can act up for no particular reason too . . . that is just my experience.

If you have a copy of your employee booklet for your benefits, you should look up LTD benefits. Most any company that has STD coverage, is likely to have LTD as well (at least here in Canada).

I don't know much about SSI, but you might want to start a thread about that. I think I recall that there is 5 month period without benefits, and it can take several attempts and legal help to complete the process.

Well, some weeks we make good progress, and other weeks we make none. You are on week 8 now, so you should continue to make substantial improvement over the next 2- 4 weeks (that will be 10 - 12 weeks, all up). It really is amazing how much difference there can be in that short period.

Ultimately though Joe, there may be some permanent damage, including fatigue, bladder/bowels, numbness, burning, or whatever. We are not necessarily stuck with that forever though, as we continue to heal even more for up to two years.

I know you must be getting tired of this, but has there been some improvement overall, since the "worst" period?

Cherie

Hi Cherie,

Well, the WORST of this was when I had the Pancreatitus, I have to say that since THEN I have improved 100%, my attack though seems to have leveled out, I HAVE been feeling better than in the beginning, my right hand didn't work at all but NOW it does, I had pain in my shoulder blade but NOW it has moved to my wrist but it is not constant, I HAD been numb from my chest down to my feet but NOW it has gone away and I have feeling again with only residual numbness there. I can actually FEEL the lesion on my C-3, when I bow my head I have buzzing in my arms. My right arm and hand is weak still also. This has all been the same all week with nothing changing, I hope this is all not the way it is going to stay but I know it is not because I know the lesions are still there and when they go away i assume so will these symptoms. That is the reason I want to start the TY soon to hopefully shrink the lesions, I will also bring up some Solumedrol to my neuro on the 15th. I know I am getting better but the improvements are small now and I AM getting frustrated with this all Cherie.......

I will be patient, I had a bad depressing day yesterday but I will bounce back I am sure.

Thanks again Cherie, yu are truly a Godsend....:-)

Joe

Funny how you said "100%" better, since you are probably still a long way from normal. BUT, I get what you are saying because you could live with this result (begrudgingly), and THAT (July/early Aug) was 100% unbearable. :mad:

I had some very down periods at that time too, Joe, and you are right that you will bounce back. When coping with your body is all you can manage, everything else that goes on in life just compounds incredibly.

That buzzing is L'hirmettes. I had that for many months after the first attack, but it did go away eventually. I have had it permanently since 2003, but it is very slight compared to what I have experienced DURING the attacks.

Again, steroids are not known to help spinal lesions . . . but if it makes you feel like you are doing "something", then so be it.

As far as Tysabri, I have read on other forums that those with mostly spinal lesion activity do not seem to get the same benefit as those with mostly brain lesion activity. That's just anecdotal, of course, because to the best of my knowledge they have not scientifically tested Tysabri on the various segments (spinal vs. brain). If it is true though, the good news is that Tysabri might be even more effective for brain lesions (then what is "advertised"), because the spinal lesion patients from the trials would have dragged down the overall stats.

I assume you are well informed of the risks for PML and other opportunistic infections with Tysabri, as well as melonoma, rebound effect, liver concerns, etc.? Those risks are low, but should be weighed up.

Some people claim Tysabri has helped their Quality of Life, through improved symptoms . . . not to mention reduced # of relapses, and reduced disability progression. Like all the meds we try, it seems to work very well for some of us, and not at all for others. I hope it is your ticket. :hug:

Cherie

Hi Cherie,

I didn't know about TY not doing anything for spinal lesions but I am getting scared now AGAIN........

Yesterday I was at the hospital getting an MRI and for about 5 minutes I lost the use of my upper body, my arms just would not work, it was a weird thing but then as fast as things stopped, it all came back but very WEAKLY, my arms DID work but were so weak I was shaking just holding them up........I went had my MRI and then everything went back to the way I have been with just weakness and numbness, it was scary, I was just about paralyzed from the waist UP...........SO things are still screwed up.......I am thinking that I am never going to get back to normal, or is THIS my new normal??

Joe

No Joe, not that Tysabri doesn't have the potential to have ANY positive affect . . . it just may be very limited when it comes to the spinal cord.

The goal of Tysabri and the CRABs (DMD's for RRMS) is to reduce new and transient inflammation, ie. "enhanced lesions". If this med helps with reducing inflammation (transient lesions), then theoretically there will be less immediate damage, and there should be less T2/T1 (longer term) lesions that will form . . .

However, TM attacks are rare and very seldom occur again. People get some spinal lesion "activity", but it is usually much, much less severe then what we've experienced. So . . . concern over this level of future "active inflammation" really isn't so much of an issue anyway.

What those of us who've experienced this level of spinal lesion activity are left with collateral "damage" from the one attack we've had. There is nothing that Tysabri can do for that as it can not repair the myelin/axons that were damaged in our spine. At best, all that Tysabri can to do is potentially reduce further serious attacks of the spine . . . which as I said are very rare anyway.:rolleyes:

(As I said before though, Tysabri may prove very helpful for the brain lesions though . . . .)

I've experienced that too, Joe. In fact I experienced a LOT of that with MOST of my lower body, with my first attack.

You are still healing, and your body will continue to have "short-circuits" while it looks for new routes ...

Cherie

Hi Cherie,

It is just that this past week things seem to be going bad with everything, financially also because of my neuro filing that paperwork too late. That is adding to things too. When i was first dignosed with MS i did research and even everyone on the boards always said spinal lesions were the debilitating ones, I was scared of them and glad that I didn't have them, but NOW my bigget fear has come onto ME.......

You have been one to keep me going through this, I am still very frightened of my outcome because of the way things have gone these past couple weeks, I hope that I can get on the Ty soon so that as my nerves find new routes the NEW routes do not collapse, know what I mean?

Thanks again Cherie

Joe

It just seems to go on and on, doesn’t it?

The spinal lesion/TM attacks, like this one, are gross. I still say they should put us out for that first 6 weeks. http://i173.photobucket.com/albums/w...lies/moon2.gif Even though it is still darn hard after that, at least we’d be well-rested up for the recovery phase.

Stress, especially financial, is much harder to cope with when our bodies are messed. http://i173.photobucket.com/albums/w...ies/zombie.gif I never even knew what stress felt like before my second TM attack . . . the closest I’d ever got to that feeling before was “excitement”.

I'm glad I was here to guide you too, Joe. Trust me, everyone who’s experienced this as been just as freaked or more than you. I wonder if I was lucky that no one could tell me what was going to happen the first time, cause I don’t know if I would have had the strength when I knew how long it was going to take. The second time WAS much harder than the first, cause I knew what I was in for. http://i173.photobucket.com/albums/w...s/electric.gif

Here’s to hoping we’ve paid our dues, and everyone else’s that we care about. http://i173.photobucket.com/albums/w...lies/drunk.gif

Cherie

Hi Cherie,

For the first month I was in and out of the hospital with the pancreatitus, now it has been going on the 2nd month of this and I am not in the hospital so I am doing everything for myself and some of the time I am OK and mostly the rest of the time I am all messed up.....Actually I don't think that I have gotten MUCH better at all because the first month I was not doing anything for myself so MAYBE I was just the same as now, I DO remember being more numb in my upper body than I am now and my right hand works better then before BUT I still am messed up and still don't feel well enough to go back to work even part time. I see my neuro on the 15th so I will see what she says. I am worried about my job at this point, I thought I would at least be better enough to ease back into work by now.........

This DOES seem to go on and on, well it doesn't SEEM like it. Things really DO go on and on and on....

SO Cherie, do we get any kind of award for going through this?..........LOL

Thanks again, I know you guys in Canada don't celebrate "Labor Day" do you?

We all get 3 day weekends because Monday is Labor day, personally I have been on a weekend for 2 MONTHS anyway.......:D

Hasn't been any fun though as you know........

Joe

But Joe, you were 100% dependant a month ago, and now you ARE doing some small things for yourself, right? Anything we do during this period is exhausting. I remember when even breathing was WAY too much effort, and fixin' a meal was just not going to happen. We ordered in a lot back then. :cool:

You know, when allow myself to think back at what I went through, I know it went on much. much longer then the initial 3 months (15 months longer, each time), but it was that first three months that was killer. The first 6 weeks was the hardest, the next 6 weeks was somewhat better. It doesn't become a distant memory EVER, unfortunately.

You can't rush this, and no amount of stressing will change that. Just take each day as it comes, and try to keep the faith that things will get better eventually. I know, easier said then done. :hug:

Cherie

Actually Cherie, I am doing a LOT for myself these days, I get bouts that my upperbody does not work and almost goes dead on me but other than that I am in a cog fog and tired a lot but I am doing a lot for us more than a month ago, the thing that worries me is that the lesions on my spine are not going away and probably never will so I fear that i am going to stay this way......will these lesions get better? ty doesn't do much for spinal lesions so how am I going to get better.............How did YOU get better?

Joe

Joe, that was one part I have never understood ~ the damage is in our spine, yet we have so much fatigue and cog fog going on. :confused: I have concluded that it is because our bodies have been so taxed/stressed, we've gone on overload or something. I really don't know why that happens though.

The lesions will not go away, you are right about that. I think spinal lesions are fairly permanent, but the inflammation definitely dies down. What we are left with is plaque (like scar tissue) on the nerves.

There are two parts to lesions; inflammation and damage. What we want to do is avoid the flare-up to begin with, so that there is no opportunity for damage. Of course we really don't have a lot of control over that, but I think that those of us with spinal lesions might have some; we really need to avoid infection in our bodies at any time!!

Your inflammation is still healing, and you should get better yet. You seem to be past the "I can not live in my skin" stage, and are transitioning to a new "normal". I can't even begin to predict what that normal will ultimately be, but we are almost always left with some amount of challenges for several months. They say we continue to heal for up to two years.

It was actully the fatigue and cog fog that took me out of the workforce. I was lucky that my employer let me keep trying from home . . . but they were only being kind and humoring me. I was not at all ready to give up on remaining in the workforce, so I am very thankful that they let me make that decision/change in my own time.

That was the second attack though, and the odds were against me. I'd had MS for many years already too . . .

All you can do is try, Joe . . . WHEN you are ready to do that. I did that after the first attack, and it wasn't easy, but I found myself eventually.

I wish I could offer you more assurance, but I've personally gone two ways with this, and there is really no way to predict what will happen with you. All I can say is that there is definitely still plenty of hope.

Cherie

PS. If all else fails, I'd try LDN if I were you. It helped me a lot ...

Hi Cherie,

Every time I read your reply's I say, WOW, I really cannot express how much this is helping me.....THANKS!

I must still have the C-3 lesion that is still active because besides the fatigue, cog fog and numbness, I am still losing use of my arms, it has happened at LEAST 3 times so far and it seems to be that dang C-3 lesion doing it, everything else that is going on in my spine the C-9 and T-1 lesions I thik have died down.......I hope the Ty helps with my brain stuff and I am going to being up the LDN to my neuro and see what she say's about giving it to me...........she DID say that she could not give me steriods because of the pancreatitis, but steriods might not help anyway although when I had them before the 5th day things did seem a bit better and they did stop the pain in my shoulder blade, THAT was the C-3 also, I would love to try them again, but this damn pancreas of mine:(

Believe me Cherie, I have disability for 26 weeks and if I am NOT better I will NOT go back to work.......

I am REAL curious about that LDN....

Thanks again

Joe

You are probably right about the upper C lesion being the troublesome one, since your arms/hands are affected.

There have been so few of us that I've talked to, but if the attack gets this severe, there are always clear cognitive/fatigue issues. I have learned to manage my problems with LDN, sleep whenever I need it, and reducing stress. I can still be pretty clued up at times, but definitely not at others. It is very hard to find an employer who is empathetic to this issue! :rolleyes:

As far as LDN, there is a stickie on this forum for those of us who use it. It's a long read, but good for one of those insomnia nights. ;)

http://neurotalk.psychcentral.com/thread50240.html

Just be sure that your doc knows you are talking about NALTREXONE, NOT Novantrone (a chemo drug). If you decide to approach him, come prepared with some of the info available on that stickie.

Cherie

Hope you are feeling better soon
 

Hi Joe,
I don't know if you remember me I posted awhile back and then have been kind of silent. I have been sitting back and reading everyone's posts though. This is new to me and will admit feels wierd pouring my heart out on this forum.

You were one of the people who responded to my post "TM & RRMS" and it is greatly appreciated and so I figured that I better start giving back and adding my 2 cents. However, I am in the learning stages of what is going on with my body and so I feel that I do not have a lot of knowledge to offer like so many other well informed posters here doBless them all! :grouphug: I read everyones posts religiously and am trying my hardest to become more informed.

Anyways, I wanted to let you know that I have been thinking about you and I am sorry for all the red tape that you have encountered. The added stress definately is not a good thing for you. I hope that your flare is subsiding and you are feeling better soon.
:wink:
SS

Hi SS, yes I remember you and appreciate your concerns, my flare is getting better VERY slowly, I still have not gotten a disability check, I expect it any day..............I know now that I must stay on top of that doctors office, I have taken my stress level down now because I am being more proactive with my fight......:-)

Thanks again SS, how are YOU doing anyway?

Joe

Hi Cherie,

I have read that whole thread on LDN, sounds lie something I would definately want to try......

MY employer is NOT a sympathic man, as a matter of fact he is a real JERK, but before this attack hit me and for the past cople years I have managed a 2 million dollar account for hm and then when this hit me all hell broke loose but they are getting by so far. He is banking on me returning soon otherwise he would have fired me already...........Aside from this TM attackI don't know if I can go back there because of my cog issues............A bit more time will tell won't it.......

Thanks Cherie,

Joe

Well, the cog issues might last a L-O-N-G while, but each of us is different. I did come back 100% after 18 mo with the first attack, but then again I had a baby in the meantime. That'll mess up a person's head, even without TM. :D

The second time, I don't think I would have recovered any more then I did (after 2 yrs), but the LDN helped considerably.

Try to get your hands on that employee benefits information, Joe. Someone on this forum (I think it is this forum?) was fired from her job, which turned out to be a blessing in disguise because she got LTD out of it.

We can't be fired from a job, here in Canada, while on STD or LTD. In fact, they had to keep my job open for 2 yrs after I went on LTD, although they could back-fill it in the meantime. I now get LTD + all my benefits (including life insurance and employer pension contributions), right through to retirement age.

I don't know what I'd do, trying to raise two daughters disabled, with no money to boot!! :eek:

Cherie