Introducing Myself

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Introducing Myself

Postby SarahEllis » Fri Dec 03, 2010 5:44 pm

Hello Everyone,

I'll try to make this as brief as possible, I just wanted to give you guys a little history before I start going question-askin' crazy. Personal stuff, I currently reside in Southern California, I am married to a wonderful man who is a Pilot in the military (so we move a lot) and we have two children, a son who is 9 and a daughter who is 3.

I was diagnosed with Multiple Sclerosis on October 29, 2009. Soon after, I started Copaxone. Then, on June 22, 2010, my diagnosis was changed to Neuromyelitis Optica (NMO), better known as Devic's. Soon after that, I stopped injecting Copaxone as it had no benefit to NMO. Last month, in search of a second opinion on my NMO diagnosis, I visited a Neuro in San Francisco who has quite a bit of experience with patients with NMO. He told me after viewing everything in my file that he believed I didn't have NMO but I for sure have a Syrinx in my spine. (Photo attached for your viewing pleasure, I hope it doesn't come out too large.)

He also told me that it's probably not the only thing I have since I do have lesions on my brain and a laundry list of symptoms that lean more towards MS. So currently I sit with a diagnosis of Syringomyelia plus one. Or at least I hope it's just one other thing; I'll know on January 4th.

So there you have it. My only chronic symptoms at the moment are pain (all through my back and in my legs) and what feels like the MS "Hug" around pretty much my entire torso. I must also mention that the syrinx has appeared to have doubled in size (length) since my first spinal MRI only a year prior. I'm hoping that by me not knowing about it and spending 6 days a week in a gym for the last year, that maybe that's the reason for the growth. Now that I'm chilling out, I'm hoping that sucker will shrink; but I don't even know if that's possible.

Thanks for reading and btw, my (hometown) neuro thought that syrinx was a lesion when he saw it on my first MRI. I'll inform him on December 15th that Mr. San Francisco Neuro say's it's a Syrinx. That'll be fun.

Image
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
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Location: California

Re: Introducing Myself

Postby Amy Joe » Sat Dec 04, 2010 6:21 am

Sarah, Welcome! Sorry to read about your experiences with un-informed MD's....you joined our boat! A lot of us in it and can relate to frustrations.

I do not have SM or MS. I have CM + other stuff. My mother has MS +++... She manages it with out those shots, her latest MRI shows more lesions and our NL wanted her to start the shots but she opted out. Our research found Vitamin D in higher doses can help + B12 so this is her therapy.

Thank you to your husband for his service and YOU for supporting him!

Browse around....there is loads of information here!

Amy Joe
MVA 11/05, Dx CM 7mm 1/06, PFD 10/07/2008
Occipital Neuralgia, POT's, Hashimoto's Thyroiditis, Vitamin D Deficient, Lymes, Celiac
NS: Dr Carl B Heilman
Tufts Medical in Boston
http://www.amyjoeonetoughcookie.blogspot.com
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Re: Introducing Myself

Postby wendi » Mon Dec 06, 2010 9:15 am

Hello & Welcome:

I am so happy you found us, but sorry for the reason. There is another woman here who also has MS and SM. It is rare, but does happen. That stinks because they are both bad, but you learn to live with them and we will help you with that.

I am originally from CA, but live in PA now.

Welcome again!

Wendi in PA
ACM 7.5mm B4 TCS 2.4mm post op
TC ,TCS @ TCI on 1/3/08,
chronic sacrolitis
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Re: Introducing Myself

Postby SarahEllis » Mon Dec 06, 2010 2:39 pm

Thank you both for the welcome! I'll take MS over NMO any day, although I'd rather have neither.
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
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SarahEllis
 
Posts: 18
Joined: Thu Dec 02, 2010 6:09 pm
Location: California

Re: Introducing Myself

Postby tattoodlb1 » Tue Dec 07, 2010 9:57 am

Hi, welcome aboard!

Do you have a pain doc? Or your PCP who will give you pain meds? I hate taking them, but they have given me my life back. I thought I had MS with the white dots on my brain, but no one pays attention to what I have to say...... doctors hate it when you know more about your body then they do.

Thank your husband from me and you too for the sacrifces you all make for serving our country.

I was just awarded Disability after waiting 2 years !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! My syrinx grew 4 inches in length in 4 months and I felt every one of those inches. My syrinx is now into my conus which is rare .

I'm glad you found us, there are some awesome folks here and I've made quite a few friends. Trying to get back to it.

I would cut back on going to the gym (just my opinion) and maybe just walk.


Take care and welcome!!
Syringomyelia entire spinal cord including throughout conus, Chiari ? Hemangioma T2, Multiple Tarlov cysts; Empty sella & degenerative disc disease entire spine.. severe Fibromyalgia (central cord hypersensitivity).
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Re: Introducing Myself

Postby SarahEllis » Wed Dec 08, 2010 12:18 pm

I do not have a pain doc yet but I do see that in my future. My PC prescribed Neurontin when I saw her this past Monday for my pain. I took it for a day and felt a hundred times worse. I was warned that it could possibly make me drowsy and that was the only thing it didn't do. I was nauseous, dizzy, and it gave me a faint headache across my entire forehead. My pain was irritating but not excruciating and I think I'll take that over the side effects of Neurontin, at least for right now. I was on what I believe to be a very low dose, 100mg 3x a day. I'm not sure if they could cut that back anymore.

Does anyone here use a TENS machine for pain? What's your opinion of it?

I stopped working out about 2 months ago (at least the heavy stuff) due to tendinosis of my rotator cuff. But now, of course, I'm going to take it easy. I read that great post from a member on here, I think it was titled "Living with SM and CM". Great info! I was shocked by the don't that said, "don't lift anything heavier than a gallon of milk". Really? I wish it said "Absolutely NO housework!" :P

Congrats on being awarded disability! I've heard it is a long and frustrating road.

And thank you all for the "Thanks" and support you show the US Military. We very much appreciate it.
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
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SarahEllis
 
Posts: 18
Joined: Thu Dec 02, 2010 6:09 pm
Location: California

Re: Introducing Myself

Postby chrisw » Wed Dec 08, 2010 1:35 pm

I love my tens unit, it doesn't help with the SM pain but it does wonders with the muscle spasms during or after a bad sm episode. I love to put it on under a ice pack! I also have found that if I use it every day it looses effectiveness, so I try to use it only 1 or 2 days a week. You can get a good unit online for like 50 bucks if you can't find one cheap locally.

I would strongly suggest trying the nurotin (or lyrica its expensive sister med) for a couple weeks. Like most new things its going to take a while for the side effects to go away and the pain releif to work. The first few days are the worse but after a while most of the side effects will go away and you won't notice the rest.

Also you can try to take it at night. I take 450 of lyrica at night and 150 in the am. It really helps me get and stay asleep.
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Re: Introducing Myself

Postby karenb » Wed Dec 08, 2010 3:34 pm

Definitely!!! I have a combination TENS & muscle stim unit, and the stim portion does help with some of the spasms.

I also use buckwheat bags, and a big 10-pound rice bag (in a pillow-case / 5 minutes in the microwave) to ease pain.

I thought I wrote back something early this morning (like 2 AM :lol: ) about titrating onto Gabapentin to avoid the "brain fog" people often report.

Karen
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Re: Introducing Myself

Postby SarahEllis » Wed Dec 08, 2010 10:45 pm

Thank you both. At chrisw, cute Yorkie! We have a male, Max, he'll be 5 on the 10th. He drives me nuts and is the worst one out of our three, but I love him of course. The others are a Great Dane and a German Shepherd.

Anyway, I found this site that has a printout of some paperwork that you can bring in to your doctors office and if he or she signs it, you can receive a TENS unit for free.

Here's the link: http://www.empi.com/empi_products/detail.aspx?id=146

That takes you directly to the unit but you can click on "How to obtain an EMPI device" on the left hand side and it will take you to the page where you can print the paperwork. Just in case someone else needs one. I have a few friends who swear by them and received them through this site.
Sarah
Diagnosed w/RRMS on October 29, 2009. Changed to Neuromyelitis Optica (NMO) better known as Devic's, on June 22, 2010.
Diagnosed w/Syringomyelia T-4 to T-9 on November 17, 2010.
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SarahEllis
 
Posts: 18
Joined: Thu Dec 02, 2010 6:09 pm
Location: California

Re: Introducing Myself

Postby chrisw » Thu Dec 09, 2010 2:26 pm

I wish my insurance covered it! Some do and its free but some don't like mine...
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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Posts: 494
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Location: Columbia, SC and lots of time near Blacksburg and Smith Mountain Lake in VA

Re: Introducing Myself

Postby Easy » Sun Jan 02, 2011 4:10 pm

Hello everyone, a small syrinx was found two years ago at T11 and recently C5(?) (also have moderate degenerative spondylosis and stenosis in midback and lumbar) but now the pain has become much worse in the last four months (groin, buttock, shooting down inner thighs to feet). Bottom of feet feel
tingling, loss of sensation. Sinuses always stuffy, tinnitus (ringing in the ears). Can these syrinx grow?

To Sara Ellis, who is a good ns in San Francisco?
Easy
 
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Re: Introducing Myself

Postby chrisw » Sun Jan 02, 2011 8:54 pm

Hi easy! Well, what your going to find out that because this is a rare condition that it is never easy. I wish you could join our family under better circumstances. Between all of our experience you may discover our combined knowledge is much more in these issues than most non-specialist nuerosurgeons. None of us are medical doctors but we can give insight and ideas you can bring with you to your medical appointments! We also are not worried about malpractice lawsuites so we have the freedom to discuss experiemental or non-traditional viewpoints.

Syrinxs can be stable and not change but most of us have found that ours do change and/or grown. Many of us have figured out the cause of the syrinx and have been able to fix what is causing it. Once the cause is figured out many people find physical symptom relief but the main goal is to stop the problem from getting worse and causing more symptoms.

The most common cause is a csf blockage between the brain and the spinal cord. It also can be caused by a tumor or other spinal injury within the cord itself. With the most common cause being a Chiari Malformation (CM). A syrinx, while causing most of the physical symptoms people experience, almost has to be looked at as being itself a symptom of another issue if this makes sense...

Have you had a Brain and whole spine MRI?
SM, Chiari 0 (Rosner), Diagnosed 8/08 after car accident 6/08, Vitamin D deficent
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