Brand Spankin' New

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Brand Spankin' New

Postby Mama_Darwin » Thu Nov 03, 2011 5:07 pm

Howdy, folks!

i was just diagnosed with syringomyelia last Monday. As far as i know, i don't have any Chiari malformation, but if i do, i assume it would be Chiari 0. i've poured over my brain MRIs, and although the syrinx itself (in the C1-C2 neighborhood) is very clear on the films (okay, it's on a CD-ROM, but "films" just sounds more concrete and down-to-earth to me), i can't really make heads or tails of the rest of it. i've had neurological symptoms for over five years now. It started with tingling and then numbness in my left fingers/hand. i think the next place was the left side of my face, but at first, the symptoms came for a day or less, but then started to hang around for longer and longer. i now have some symptoms constantly (numbness/tingling/pain in the left side of my face, visual "clouding", weakness and numbness plus tingingling/pain in my left hand, and large patches of numbness on my back), and some (overwhelming fatigue, numbness/tingling/pain in my legs, thighs, hips, buttocks, and feet, usually on the left side, numbness/tingling/pain in both arms/hands/fingers, as well as my neck, back, and sometimes abdomen, plus some trouble finding words, and balance problems) which come in clumps, and tend to hang around anywhere from a few weeks to a couple of months.

My first neurologist expected to find MS lesions on my first MRI, and when no such areas showed up on my brain, he dismissed my symptoms. That was four and a half years ago, and i know see that the syrinx, although smaller, was visible on these films. He ordered another brain MRI last year. Again, the syrinx was visible, but i didn't know what a syrinx was then, and he looked only for MS lesions, and finding none, wrote me off once again.

Thankfully, my primary care physician took my exponentially worsening symptoms quite seriously, and he both ordered another set of head MRIs, as well as blood tests and an EEG, and referred me to a different neurologist. My PCP immediately recognized the syrinx, as did the new neurologist (who found it unconscionable that my symptoms had gone untreated for so long). i saw him for the first time last Friday. He ordered a spine MRI and VEP, and said that in addition to the syrinx we currently know about, he suspects there is also something in the thoracic and/or possibly lumbar region. He also but me on 300mg Neurontin (Gabapentin) twice a day. Tomorrow will be one week on this, and the side effects seem a little better, but i'm still a little woozy and even more wobbly than usual, and my head hurts (the headache has definitely gotten a little better every day). The neurontin fairly quickly made a significant difference in my pain level. The pain i experience is, for the most part, very much like somebody sticking needles randomly into the effected body part (i tend to refer to this as a "prickly" feeling). On neurontin, it feels as if a warm soothing sweater or blanket has been pulled over my body, blotting out the prickles. i still have some breakthrough pain, but in general, the difference is amazing.

In other news, i'm a 40-year old married mother of two beautiful daughters, aged 10 (almost 11) and 13 years, and two very spoiled cats, aged around 8 years. i work as a home CareGiver for elderly clients.

- Beck
Idiopathic SM (baby syrinx in the C1-C2 neighborhood, just 2-3mm x 1cm). No CM.
I'm fumby and stumbly. Gabapentin (Neurontin) is my best friend.
Posts: 8
Joined: Thu Nov 03, 2011 4:37 pm
Location: Ohio

Re: Brand Spankin' New

Postby drummergrl » Thu Nov 03, 2011 10:04 pm


Welcome to the "club!" I have SM, too, but mine was caused by Chiari. I am on Neurontin 2x a day at 300 mg. each as well- the analogy you used was exactly how I feel! That's great that the medications are quickly helping your symptoms, a lot of times people have to try many different combinations before feeling any relief. The wooziness will hopefully decrease soon- when I started it (about 2 years ago) it took a few weeks for my system to adjust.

It sounds like you have a great team of people to work with on this-having a PCP who is in touch with SM and is willing to get you a good neurologist is a wonderful first step. I'll be thinking of you as you get through the next few weeks- it can be tough trying to get used to new medication, new illnesses, and new doctors. I know I struggled a bit when I was first diagnosed, but coming on to ASAP helped me learn so much about my conditions and made me feel like part of a community. I hope you'll find the same thing here!

Good luck!
CM, SM, Scoliosis
Posts: 160
Joined: Thu May 17, 2007 4:01 pm

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