New to all of this in MI

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New to all of this in MI

Postby JeffinMI77 » Thu Dec 29, 2011 11:26 am

Hello everyone! I've been reading alot of your post and it has been very helpful to me. I was recently diagnosed with SM and i'm still trying to take it all in. I live in Michigan ( Detroit suburbs) and i'm looking for and support groups of people in my area that may be able to help.

I just turned 34 Dec 2 and had two MRI's within two weeks after. I'd been suffering with severe back pain with tingling and numbness in my extremities. I have a list of other issues that may or may not be related. I get very frustrated because I appear to be a healthy young guy. Most people think i'm in my early 20's. I have had NP's write in my medical file that I am a drug seeker! I also work in the medical field doing direct patient care and so much is expected of me. They think because i'm a guy i should be able to lift anyone without assistance. I'm afraid to let my employer know what's going on in fear they will fire me. We have absolutely no disablility and FMLA doesn't apply until you have been there a year. I just spent a year of my life and a whole lot of money in school and I feel it was a waste. With every patient I lift or transfer I feel it's one day closer to a wheelchair for me! My Dr suggested I apply for social security. I'm very scared because I assume i'd have to quit my job and have no other form of income. It's a nasty nastly circle...

ANY COMMENTS OR SUGGESTIONS IS GREATLY APPRECIATED.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
Posts: 42
Joined: Thu Dec 29, 2011 10:29 am
Location: Wyandotte, MI

Re: New to all of this in MI

Postby gunflint » Thu Dec 29, 2011 11:52 am

Jeff,
Welcome, my gp did a lot of back peddling concerning pain meds when they finally took a cervical mri and found the syrinx.I've got 20 years on you so the work thing isn't as much of a burden to me. You will have many challenges in front of you but remember that you are not alone.

I don't know if this is your first post but I want to stress how important it is for you to find a NS with a lot of CM/SM experience. It could change everything for you. I've always wanted to make an appointment with the first NS and neurologist I visited just to shove my mri in their face and say, see I told you something was wrong you moron. All though it might be educational for them, it would be a waste of my time.

I was diagnosed in June and had decompression surgery in October. I won't lie. It was miserable. But I'm improving steadily and I sometimes don't check this board for several days just to put it out of my mind for a while.

Have you checked into the NIH? They are doing a study on SM and I was accepted and that's where I had my surgery. There's information on the board here. Good luck to you. I will try to check in more often and see how your doing.
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Re: New to all of this in MI

Postby JeffinMI77 » Thu Dec 29, 2011 12:29 pm

Thank you so much for you reply,

This is in fact my first of maybe many post. Before I called and got registered I read many post. You all seem like wonderful and supportive people. I would Kiss the people who started this site!

I'm already experiencing the fact that not many people know of this. My best friend is a Physician's Assistant in Pain management and has never heard of it. Do you have CM as well? I still don't know if I do or not. I've never had a spinal injury to my knowledge. Not that i'm happy with this diagnosis but it just helps me make sense of what's going on in my body.

I actually had to call off work today because it's "one of those days"...woke up with a pain going from my shoulder blade to my right thumb.

I'm also curious, Have you heard of anyone having tingling in their face?

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
Posts: 42
Joined: Thu Dec 29, 2011 10:29 am
Location: Wyandotte, MI

Re: New to all of this in MI

Postby Janice » Sat Dec 31, 2011 11:27 pm

Hi Jeff & Welcome!

It sounds like you need to check into your state disability laws. In California, I was approximately 6 months on the new job when I became ill & never returned to work. If you have any vacation or sick time, that would help. I had to be off for 7 days, using sick and/or vacation time, to cover those days. On the 8th day, state disability kicked in for 1 year, as well as short term disability from my employer. After that, the federal disability kicked in once I was approved. That said, find out what your options are. I wasn't eligible for FMLA either but my employer kept me on until my state disability & employer short term disability ended.

Check into it, I hope all works out for you. Take care,
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Re: New to all of this in MI

Postby passmass » Sun Jan 01, 2012 7:18 am

Hi Jeff, I was 36 when diagnoised with SM. I owned my own business and owed alot a money to the bank. I was the Majority owner of business and had 3 minor owner partners. I worked a 20% schedule for 2 years after I started having symptons on a weekend. Saw GP on Monday, Nerve studies on Tues, MRI on Wed. and found Syrinx C5-6 thru T2 and below March 7, 2004.
I had surgery In Oct 2004 to fix disc that had ruptured into spinal cord at C5-6. Got better for few weeks and worked Christmas rush at business. After Christmas back to old painful self again just not as bad.
Went to Mayo,ruled out alot of things but did not come up with any addtional diag, Went to TCI(The Chiari Institute) and they put everything together for me. I had Tethered Cord surgery there and was diagnoised with other things which I'll list.
The Tethered cord surgery was a lifesaver. I lost many symptons over the course of about a year.
I finally decided to sell business and go on disability. Had no choice.
I just had 2nd ruptured disc that ruptured into spinal cord fixed on Dec 20th.
I have Elhers Danlos Syndrone (which started my whole problem), Syringomyelia, Chairi (0), Fibromyelia, Chronic Pain syndrone,Central Sleep Apnea, Degenerative DIsc Disease, ETC.
Be sure and save all paper work from all Doctors appts. get Doctors on board with your disabilty flight.
Find a Doctor NS and NL that understand SM.
I was blessed to have a private disabilty policy( just not enough) and was also blessed to get on SSDI after 6 weeks in my state and then it was pulled for a review by Federal and approved in 4 weeks. I had to wait for the 6 months to expire after not working to draw SSDI in MS.

Good Luck and if I can help will be glad to!
Passmass
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
passmass
 
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Re: New to all of this in MI

Postby JeffinMI77 » Sun Jan 01, 2012 10:44 am

Thanks, this info is very helpful. I did look and the state website and will be calling probably tuesday because of the holiday.

I was a little confused when you said you were approved in 6 weeks and then said you had to wait 6 months...I know each state is probably different but can you clearify? I'm finding that with several programs I may find something that would hold me over until Soc Sec is approved. I just wish my job had something.
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
Posts: 42
Joined: Thu Dec 29, 2011 10:29 am
Location: Wyandotte, MI

Re: New to all of this in MI

Postby passmass » Sun Jan 01, 2012 2:22 pm

I was approved for Social Security in six weeks but you do not receive benefits ( payments) for until after 6 months after your application date.
Sorry for the confusion. Passmass
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
passmass
 
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Location: Mississippi

Re: New to all of this in MI

Postby passmass » Sun Jan 01, 2012 2:36 pm

Jeff if I remember there is a 2 year wait on getting Medicare from your application date.
I want to make sure I am correct on this.
Thanks Allen
EDS, SM C5-T2, CM, DDD, De-Tethered (Jan. 07), Fibromyalgia, Central Sleep Apnea, Central Pain Syndrone
passmass
 
Posts: 229
Joined: Sun May 20, 2007 2:28 am
Location: Mississippi

Re: New to all of this in MI

Postby karenb » Sun Jan 01, 2012 10:08 pm

Hi Jeff,

I don't know when I developed SM - I started using a cane when I was 33, and was officially diagnosed when I was 43... I now use an odd combo of a walker, multiple canes, & the furniture indoors, and a wheelchair whenever I leave the house.

I've only recently (4-1/2 years after diagnosis) found a doctor who seems to understand what's going on with my spine (as opposed to my psyche, which is its own ball of worms...).

I was approved for Social Security Disability (SSD) retroactively (I couldn't complete the final paperwork because I'd just had hand surgery & couldn't physically open the envelope!). I was approved for SSD and paid retroactively - the start point is official disability start date + 6 months (and round to the start of the month). As a result, since my last work date was Sept 2, 2008, the clock started ticking on Sept 3, 2008, and I was awarded SSD effective March 11, 2009 - So my social security start date was March 1, 2009 (even though I get paid the 3rd Wed of the month...).

After I had been receiving SSD for almost two years (around Oct-Dec 2010), I started getting info about Medicare. I started coverage under Medicare on March 1, 2011 (SSD effective date plus 2 years). I hope this example makes some sense.

I do think you owe it to yourself to look into the NIH studies. Check out http://www.clinicaltrials.gov/ct2/results?term=syringomyelia for more info. The basic gist is that you submit your test results, etc, and the SM/CM physicians at the National Institutes for Health evaluate them to see whether you're a candidate. At worst, it doesn't hurt... at best, you may be eligible for the best treatment available. I noticed gunflint mentioned this to you, and he's received a lot of benefit.

Good luck!

Karen
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Re: New to all of this in MI

Postby JeffinMI77 » Sun Jan 01, 2012 11:13 pm

Again, thank you thank you thank you to all of you! All this is very helpful :D
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
Posts: 42
Joined: Thu Dec 29, 2011 10:29 am
Location: Wyandotte, MI

Re: New to all of this in MI

Postby JeffinMI77 » Wed Jan 04, 2012 2:10 am

Karen,

I followed that link and submitted my info..Hopefully I will be contacted.


Thanks,

Jeff
syrinx x2 T7-T8 to T9, and T11-T12 to T12-L1...also bulging disc at T4-T5, T6-T7, and T8-T9.
JeffinMI77
 
Posts: 42
Joined: Thu Dec 29, 2011 10:29 am
Location: Wyandotte, MI

Re: New to all of this in MI

Postby razzle » Wed Jan 04, 2012 4:48 am

for a support group in Michigan contact

Cindy Dellamater-Preville
10299 Oak Rd
Otisville MI 48463
810-631-6775
Hope for Chiari

Hope Hagan
Hidden River Club House
Adrian, MI


hopeforchiari@yahoo.com /> Meets 2nd Tuesday of each month

also
Chiari Crusaders of SW MI
Meets second Saturday of every month
Fred Russ Forest on Marcellus Highway in Decatur MI
Time 3pm-5pm contact Lisa Friend at lisa.friend@eimotech.com or Tonya McKee at purplegirlpiggy@gmail.com.

also Lisa is on FB
Once you choose hope, anything's possible.

Roz( Razzle51 or Rosalyn
Iowa
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