Retired at 40 with new DX

Post number 600, thought maybe it should be an update!

I was in a major car accident a few months back and have been off work since then. The 45 MPH impact tore some scar tissue near my spinal stim leads , new neck issue, broken collarbone, abdominal bleeding and set everything else (RA, chronic pain, fibro) into a huge flare.

I was going back and forth for years over when to give up working, the accident just made the choice for me. I am working with a very nice physiatrist who immediately said I had no choice but to go on SSD. I am in the process of going for a driving eval as well for adapted controls, left leg reflexes are non existent and right leg is decreased. Also waiting for forearm crutches to arrive since I cant hold my cane any more.

In the mean time I was sent to a new neurologist who is very confident I have MS. Of course with the SCS I cant have an MRI to get a definative DX so I am just waiting for a few more tests till I go to John Hopkins for an eval. I also need a lumbar puncture but she wont do it due to my surgeries and SCS. I hope to hear back about that being scheduled next week. Can a CT scan be helpful in DXing MS?

Of course I just got my letter that states my insurance will end 9/1 and COBRA will be $1200. With my medications costing over $16K a month and multiple specialist visits every month I need to pay it somehow. I have been spoiled for the last 10 years, awesome coverage for pennies a day, my healthcare is going to change drastically, I dont know what is going to happen.

Also in the process of applying for SSD, yippy. My LTD and pension disability were approved without a question. Hopefully SSD will go thru with minimal appeals. In any case my LTD company will provide representation at no cost/fee to me (they want someone else to pay so its in their best interest to get me SSD).

All that being said, I wish being retired made me feel a little better physically but it hasnt. So much I want to do but my body just cant keep up with my brain. Any suggestion for adapting to early retirement?

Angel,

I'm so sorry to hear of all this going on. My goodness, when it rains it pours, doesn't it?

I'm not familiar with any of the things you have going on, but I wish I could say something to help you out.

The only thing I can relate to is,...while I'm not 'retired,'.....I was forced into disability and haven't worked in 7-8 years (been on disability only since Feb 2014). My job was extremely physical (personal trainer) and I'm still grieving at the loss of that. I lost more than the ability to be as active and physical as I was before, but that which I schooled for.

I've had other jobs along these many years, but it was the personal training that was my passion.

It's an adjustment, to say the least.

Hopefully some more people will pop in and have some advice for you.

Best of luck to you.












M.

I cant offer advice because we have different tolerance and different amounts of willing to push

2 years or so i was in my worst accident sitting in line for a car in front to turn

a girl hit us over 40mp no brakes no slowing just slam

i saw it coming and broke the brake pedal

2 or so years later i just lost my it band( http://www.rice.edu/~jenky/sports/itband.v2.html )

they say its a delay from that accident and the pressure i put

its comparable to a big bowie knife in my thigh a broken bone feels better steps almost impossible up and down hard walking i cant without my brace

at the time of it the accident i felt my lower back let go grind and move

then my towns fire didnt flex door back or slide board under me i felt more in lower back but its my town you dont mess with where you live

that was the last i dont have fibro flares everyday is a flare a 8 is a great day

we were hit before that accident on the highway doing 60mph a kid floored it from a side street hit us hard

spun everything took 5 min or more to use jaws and get my wife who was driving out

sum it up if i didnt have adhd and martial arts training i would be in a chair

i just push and push till it wont let me im 40 this new it problem is trying hard to take me down and scares me bad

because of the effort and pain i just put up with to stay mobile

that where my point comes its tolerance what are you willing to suffer to stay active

we control them it doesn't and cant control or dictate our lives

my wife has to hold me back because i have gone till i pass out its my past issues i refuse to quite because of all that was said and done in my past

and i push because i want at least 50 or older before i quit but this new problem every day and i give in sometimes because its just to much

best wishes good luck

Thank you all for the replies and support. I will try and answer some of the questions in general.

I went to school to be an occupational therapist and have been working for over a decade in that field. Some rehab, school based and long term care, I did it all. Being trained as an OT I have been able to adapt my work and everyday life really without seeking outside help or advice.

The accident, well my daughter and I were driving 45mph on a rural highway while someone came up to the road on a side street. She failed to even slow down at her stop sign and I T-Boned her SUV. I never had any time to apply the brakes. Since my car was low it acted like a wedge, we went under her SUV up to mid windshield, lifting her car up, flipping it 2 times before being stopped by a telephone pole. I guess I am lucky it was a higher car or my engine would have ended up in my lap. She actually admitted to not looking,stopping or slowing down, as all the witnesses in every direction stated as well. She said she never saw the stop sign. She had a passenger plus two children in the back seat, I am so thankfull they were all strapped in properly.

I had told my dr two years ago that I wouldnt consider disability till I was 50 too. I just felt I had to stick it out no matter what it did to me. Even prior to the accident I would go to work, push thru my day, drive home and go to bed. The amount of prescribed medication is staggering, 25% of what I take every 4 hours would knock my husband on his backside. I had no life and wasnt able to do anything at home. I would stay in bed all weekend trying to recover. Now I can at least cook dinner, by spreading the tasks out from about 12-6, and do alittle cleaning thru the week. It doesnt look like much at all but its alot compared to before. I am lucky that I am vested in my union and am eligible for my pension already, its not alot but will cover insurnace and a car payment.

The driving eval doesnt bother me, except the cost of it. I really wont be able to afford it till I start getting my pension checks though, hopefully next month. The dr is ok with that since my right leg is doing ok as of now.

The thought of SSD scares me, I worry about being watched. The other day I was told that a good friend that I worked with took it upon themselves to report me to HR/my supervisor because of a picture of me sitting on a tree branch with my kids. My hubby lifted me 4 feet up onto the horizontal branch to sit there with my children for a Mothers Day photo and then he lifted me down. But she felt because I was out on unpaid medical leave I shouldnt be "climbing trees". I guess I am going to have to get used to the fact that people will always be judging weather I am "OK" enough to be working or not. Just because you are disabled doesnt mean you are supposed to sit at home on the couch all day long. My physiatrist wants me walking, bike riding, swimming, etc... He did draw the line at skydiving however,lol.

We will just need to wait and see about the MS dx, I can see it going either way. My PM dr feels she is being over cautious, but really when you look at everything I do fit the symptoms to a T. I have alot that cant be explained exactly by the back or RA. I am not going to worry about it till we know more. I go back to the neurosurgeon on the 23rd and if he recommends a myleogram I will ask for the lumbar puncture at the same time. Its literally the same procedure, spinal tap is taking out, myleogram is putting stuff in, no reason it cant be done together, at least in my eyes,lol.

Again, thank you all!

Agreed, SSD does not spy on you. However, LTD plans are private companies, they can and will spy on you.

I got a copy of my file, the "spy" said I walked without any limp, cane or discernible pain. Well, duh, I have cognitive dysfunction, not a broken knee/hip/whatever. So don't be scared -- you can do what you can do, as long as you aren't lying about your condition there really is nothing to worry about.

Thank you everyone.

I do worry about my drs notes, sometimes they are good, others are one sentence blurbs. The physiatrist says he sees no way I can be denied, although being 40 I would be amazed if I was approved the first time. My brother was approved his first try at 27 but his impairment is very visible.

I was supposed to have a determination by last week, but because I checked the box for depression they want me to see their dr. My PCP prescribing meds and seeing a counselor didnt count I guess. He didnt need any additional medical information, not sure if thats good or bad. I was so worried about meeting a new dr that would disagree with treatment. The case manager said he could put in for determination and cancel the appointment but I figured the more info the better. I asked him, who with long term chronic pain that causes them to be literally useless when it comes to the physical aspects of caring for a home and children, multiple dxs that will NEVER go away and losing their carreer at 40 wouldnt be depressed?

We will just need to see what they have to say.

Poplargrove, there is a huge debate if I can have a head MRI or not. The actual clinician manual for my model number states in several places that I CAN have a head only scan. The rep and dr say no absolutely not. I got pretty irrate with the rep in regards to this and how the drs office has been treating me so evidentally the stim NS wants me to come in and talk to him in person to smooth things out. I am going to print out the clinician manual for him, with the pages highlighted. I am not reading it wrong, I have had several people look at it. I am not a dr but am not completely stupid either and can look up my model number and can read. I know drs hate the internet for this reason, but I feel its good to be informed.

I spoke to the neurologist on Friday for about 30 minutes and feel very comfortable with her. We are doing a regular EMG, depending on the results are weather we go to Hershey for some different evoked potential nerve test or head right to John Hopkins. I have to much stuff going on for her, she doesnt want to overlook anything, I respect her for that. I wanted the lumbar puncture right away, but she wants it done down there due to my stim and wires, scar tissue and hardware.

I am ok with the lumbar puncture, I have had two myelograms which are fairly similiar, that is when dye is put directly into the spinal cord for a CT. You can get the same headache and everything.

I had a small nerve conduction study two years ago and had severe hypersensitive responses, 5 on a scale of 1-5. The physiatrist says that is a useless test though, no clue what it means really.

Polargrove, you referred to "same with your eyes", what do you mean?? I have had continuous issues with blurryness with my vision for the last two years but my actual visual accuity is fine when checked separately so they say I dont need glasses. This was done by an opthamologist not an optomitrist. I ended up with small cataracts about a year ago, so they attributed my vision issues to the cataracts.

Yesterday I slept till 3pm and was back asleep by 7PM, Today I was feeling very weird. I wasnt sure what the deal was but went about the things I had planned today. My brother was moving and needed help. He just needed my car and me to drive, I didnt actually move anything. I then went to the grocery store and lost feeling in my right leg up to my knee. Hit the floor hard. My legs are burning on fire and so weak, and I think I am going into urinary retention again too, I have no feeling "down there" and havent been able to urinate since this morning. 18 months ago I had a catheter for 6 weeks when my bladder decided to be stubborn and not work after a fall. I was just released a couple months ago by the urologist because things were working good. Geeze!!

I have tons of things I like to do, most of which I have adapted slightly over the last few years. My PM dr is encouraging me to sell crafts and those sorts of things. I can do something for a few minutes then take a break. I need to have my pottery wheel raised so I dont need to bend over to far. I plan to buy a professional grade Kitchen Aide mixer since I love to bake, a hot tub to relax in and a new pottery/glass kiln when I get my settlement from the car accident, then I will be set! I just havent wanted to settle since we dont know what is going to happen with the necket. My grandson is actually starting school tomorrow and it is a charter school that uses a lot of volunteers, so I plan on doing that a few times per month.

Even though we have a plan, afd I have things to keep me busy I am still so confused!!!

Mercy&Grace, I am fine with the CE with their psych dr., I just didnt understand why my PCP and counselor notes were not sufficient. Thank you for explaining that.

So I had my driving eval and have issues with weakness and reaction time, I am in the process of going for training and adapted hand controls.

So the neuro that thought I had MS due to diffuse pain, weakness, random head to toe parethesia, foot drop, loss of reflexes, incoordination, memory issues, bowel/bladder issues, confusion, etc... now feels that I have conversion disorder due to the fact that my EMG came back mostly normal, with only a little delayed response time in the feet. So she now insists that I have been sexually or physically abused in the past or been in a traumatic situation that is causing this, which is not the case.

Several neurologists did this to my brother when they couldnt figure out what was wrong with him, turned out he was dxd with rapid onset dystonia parkinsonism, which is very rare. I am in the medical field and am fully aware about conversion disorder, and know that it is a physiological response to psychological trauma, and is not "faking it" by no means, I know enough to know why and how it happens, as well as progresses and gets better.

I can not have MRI so we are left with ruling things out slowly. I have been told CRPS, RSD, arachnoiditis, syringomyleia due to a sryinx, arghhhhh! I have had many back surgeries, tons of scar tissue around nerves, herniations etc, no clue how my emg is normal. My pain dr always said that my nerve issues are small fiber nerve pain, not nessecarily coming from the larger nerves. I just dont know, feel like I am being tossed back and forth.

I know EMG is not diagnostic for MS but is a "normal" EMG enough to completely rule it out? I presented the info to my pain management and physiatrist drs and they disagree with her suggestion. At this point I just want answers so I can move forward.

She now wants me to see a neurologist at John Hopkins to try and sort things out. Supposedly they are scheduling me for the lumbar tap and referring me down there, but then again they have it on record that I called nearly two months ago and requested they start the process and they never did.

Why cant anything be easy?

Ang, I think going to John Hopkins is a step in the right direction. I do know that the lumbar puncture is a good tool towards dxing or ruling out MS. It can be a difficult disease to dx, even more so if the dr is not all that up to speed on MS. As you know not all drs are created equal.

After reading the garbage this dr is trying to put on you about abuse, I am afraid I would have to find myself a new neurologist. I have no tolerance for drs that try to play that card because I am a dr & I know it all, wrong attitude.

Don't worry that the emg was "normal." I cannot tell you how many "normal" emg reports that I have read over a 20 year period checking for nerve damage in the spine, both cervical & lumbar. I was told many, many years ago by several drs, two of them are highly reputable surgeons that they have about a 75% accuracy rating. You know back in the 80's all the drs sent people for emg's if they had a spine problem & there was possible nerve involvement & they were always normal. I can probably count on both hands how many "positive" emg's showed up. Where I saw positive emg's was checking for carpal tunnel syndrome, but not always did those show the real problem. Honestly, fewer drs do them now, except they are still one test a neurologist still orders, why I do not know. They are still a big thing with neurologist, lol. In all cases when the surgeon did the surgery he would find the problem with the nerves.

Good luck on your appt at John Hopkins.

Disability evaluators don't deal with anything someone may be hiding or that they think they may be hiding. They look at the medical and non medical evidence and go by SSA laws/policies to determine is someone is unable to perform SGA due to their ability to function. If a psychologist thinks a patient is hiding something, that is something that will be in their private therapy notes and can't be accessed.