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DEBBIEELMCITY
07-03-2001, 09:11 PM
Does anyone else out there have terrible migraines along with the Fibromyalgia? I started with BOTOX injections last week at a headache center, now my Orthapedic doctor is sending me to have a Epidural Cortisone Injection. Is having both of these being done so close together a risk or problem?

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Debbie Williford

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cioc1212
07-05-2001, 03:29 AM
Have you had a head/neck MRI?

Don't have any epidurals unless you have!

DEBBIEELMCITY
07-06-2001, 08:22 AM
Yes, I have had CT Scans, 2 MRI's. 1 of head and neck, another of Brain. MRA, numerous xrays. Still having these terrible Migraines just about every day. One Doctor says it is Fibromyalgia, Chairi 1 Malformation, that is my Orthopedic Doctor.

However the Doctors at the NC Migraine center say no, I have Trigger points and they are the ones giving me Trigger injections, and now the BOTOX. They only looked at my MRI and MRA films maybe a total of 10 minutes if even that long.

Any suggestions are greatly appreciated. I have had to go out from my job as a Computer Senior Analyst because the month of April I probably only made it to work 10 days at the most. So my Primary Physician took me out before I got fired. So I have not worked since April 30 of this year, and my short term disibility only last 13 weeks.

These terrible migraines only started in March, that is why I do not understand them at all. However, I do have all the symptoms that go along with the Fibromyalgia, I have had the irritable bowel problem since a bad MVA in 1994.

Any Suggestions?


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Debbie Williford

cioc1212
07-06-2001, 12:45 PM
Debbie,

You can mail your MRI films to Dr. Weingart to review, here is the link: http://hopkins.med.jhu.edu/chiari.html

My understanding is that he's pretty backed up but if you enclose a short symptoms list and a big note saying you've already been diagnosed with ACM, you may get bumped up on the priority list. It cost me $85 to get a copy of my films, well worth the cost. Be sure to include the radiologist report that comes with them. You can even get a copy of the reports from where you got your MRI's and read for yourself if you have a Chiari malformation or not(reports shouldn't be an extra charge). Once he reviewed my films he CALLED ME ON THE PHONE! :) (Reaching my old rheumatologist was like trying to reach God on the telephone).

I trust NO doctors since I've been dismissed,misdiagnosed or ignored for 20+ years. I do my own research, get copies of all my reports and make my own educated decisions along with my doctors input and advice. I don't even go in for an appoitment any more without a written list of questions. If the shots are working....GREAT keep getting them! Surgery should be a last resort. If they aren't, start exploring other avenues. Go far back on these boards and read the posts, I think we've covered just about every illness that presents in the same manner as FM so make sure you've been tested for them all. Get copies of your tests, I was told that some tests were done but when I got my bloodwork, nothing was done.

Women tend to get the runaround at the doctors office, we need to start standing up for ourselves, fighting for good healthcare and for the respect that we deserve. The best thing to do is to take notes, print out information from the Web and ask lots of questions. If your doctor blows you off, get a new one and INTERVIEW them beforehand to make sure they take you seriously. If they don't, keep looking. Don't give up, there are answers out there for some of us. Hopefully with new research there will be more and more people with "FM" finding answers and relief. :)

cioc1212
07-06-2001, 01:07 PM
Ps. if you have a Chiari malformation, visible on MRI, be very careful about getting epidurals. There is some research to indicate that they can make Chiari worse!!!

For me(I have Chiari), I would skip them, especially if there's only a small chance that they would help.





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