Scared stiff

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Scared stiff

Postby michele2412002 » Wed Nov 28, 2012 7:51 pm

This is my first post on here! Back in 2002, I was rear-ended by a semi. I got my car repaired and went on like normal. In 2005 I began to have a pain in my neck. It was discovered that I had a herniated disc in my neck at the C5-6 level. In 2006, I had a fusion and figured all would be well again. Boy, was I wrong!! Last year, I took a second job, cashier at Winn Dixie. This is when all things went downhill. Most days, the pain was off the charts. It felt as though every day I had a new pain/symptom. My entire head is in constant pain, my face occasionally goes numb along with my left arm and hand and blurriness, just to name a few. The one that has me terrified the most is balance issues. A few times, I was so dizzy I couldn't walk. I would crawl to wherever I needed to go. For the most part, I'm able to use either a cane or a walker.
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When I mention anything to my doctors, I find myself going to get more tests done. I've told them that I have symptoms of syringomyelia, but most doctors don't know enough or nothing about this disease. I feel so alone. I now work from home and wait anxiously for my son to come home from school.
Wimpy Michele
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Re: Scared stiff

Postby rdm73 » Thu Nov 29, 2012 2:02 pm

Hi Windy...You really need to find a good Neurologist and let the experts diagnose your condition. You should not jump to any conclusions. There are folks that frequent this site that could recommend someone for you to see based on where you live.
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Re: Scared stiff

Postby drummergrl » Thu Nov 29, 2012 7:43 pm

Hang in there! It's always unsettling to have such life-changing symptoms only to have doctors scratch their heads. Definitely meet with a good neurologist, one who has experience dealing with Syringomyelia. Depending on where you live, you might need to travel a bit to meet with someone of quality, but it's well worth it if you could finally get relief.

In the meantime, I'd suggest keeping track of your symptoms, when they occur, what makes them better/worse. A neurologist is likely going to ask you to do that anyway, so if you start doing it now you'll be able to bring it with you to your first appointment.

I know how frustrating it is to be undiagnosed and scared. We've all been there before, and we really do get what you're going through. Keep your head up and keep persevering it- SOMEONE will help you, it just might take longer than anticipated. But it will get better!!!!
CM, SM, Scoliosis
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Re: Scared stiff

Postby michele2412002 » Tue Jan 01, 2013 6:38 pm

Hello again! Thank you for your posts and well-wishes. I really needed to hear that.

Ok, here's my update: The pain management group I go to placed me on a Butrans patch and had me cut my oxycodone from 3 pills a day to 2. The first patch I used, I placed on the left side of my stomach and the second on the right side under my collar bone. I went back to pain management and suggested the patch may be the cause of my severe dizziness. I was told it was a possibility and handed the 2 unused patches in. After a few days, my dizziness went back to normal.

I did go see a neurologist. His response was that my pain had nothing to do with Syringomyelia, that it was arthritis. I have to admit, I'm not all that sure about that.
Wimpy Michele
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Re: Scared stiff

Postby tennesseewalker » Fri Jan 04, 2013 4:37 pm

Hi Michelle. Specifically, what leads you to think you have Syringomyelia? If you could get your doc to order an MRI of your C-spine, you could either confirm or rule out Syringomyelia. Good luck dear.

Getting my doc to order an MRI for me was like pulling teeth. He didn't even want to go there. Accused me of making it all up. So frustrating! Well, my MRI confirmed it, and my doc had a peer review over my case. He should have listened to me in the first place.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: Scared stiff

Postby michele2412002 » Fri Jan 25, 2013 12:37 am

I was told I need to get an MRI every year to check on my fusion. Since the first MRI, syringomyelia was present. It seems as though my pain is getting worse. I am truly lucky that my son (17 years old) completed high school early so he has been a big help. When needed, he helps me to the bathroom, he'll get me my drinks, ice and Advil, he'll make lunch for me. I sit on my large tush and pray and when the pain is too much, I'll admit I sit here crying and wondering what I did to deserve this. I want to be able to go to work, in my office, not here on the couch!

Well, it's late and I have an appointment with my pain management in the morning. Good night everyone!
Wimpy Michele
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Re: Scared stiff

Postby michele2412002 » Wed Feb 06, 2013 9:51 am

I'm back! It never dawned on me my error. My first MRI was performed back in 2005. The results actually noted an SM. I found an SM group with a FB page. I found their answer to my post encouraging. Here it is:

I needed an MRI to discover why I was in so much pain. This was performed in November 2005. The only thing I was informed of was a herniated disc. I had a fusion for my herniated disc and was told to have yearly MRIs. I've been on pain meds ever since. Due to the economy, I needed a second job. I was hired at Winn Dixie as a cashier. Last March, my pain got much worse and the meds didn't help. It was then that I first found out about my syringomyelia. I went back through my records and discovered I've had SM all along! The funny thing is, whenever I mention my symptoms, the doctors either don't believe me or they say I have arthritis! Talk about frustrating!!


Syringomyelia Foundation If you have a Syrinx in your spinal cord and these doctors are aware of that and still not believing it; I would definitely seek another opinion and not go back to those doctors until such time that they further educate themselves. These days it's not hard to find at least general information on the topic so it's either a case of pure ignorance or prejudice against you as a patient. I say prejudice because doctors are and MUST be on the lookout for drug-seekers due to it being such a growing problem with people abusing narcotics and, unfortunately, our group (people with CM/SM) often get pre-judged before bothering to look at records; which just ends up leaving people with legitimate needs like us suffering further. In as much as doctors have a duty to ward off drug-seekers, they also have an ethical duty to first examine a patient and their records before pre-judging and dismissing them in such ways. Don't give up; it can be very frustrating because of these reasons so evaluate your doctors carefully and be persistent.
Wimpy Michele
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