Update

General What's New With You?
1

Hi guys,

I have been away for awhile. Been busy with doctor's appointments. I am set up to see a neurosurgeon as well but my appt with him is not until Dec 23. That's the soonest appointment they could get. Oh well it is what it is. :)

I did my homework on looking for neurosurgeons in my area and wanted to make sure my future doc had good reviews and a positive bed side manner and it ended up coming down to two different docs. So when I knew my pcp was sending me to one, I gave them both docs names and I said I would be ok with either one of those docs. I am looking forward to meeting the new neurosurgeon doc in Dec. I'm hopeful that my experience in working with him will be a good one.

So after seeing both the neurologist (I was being sent to him when I first joined on here) and my rheumy, I asked both about my fibromyalgia diagnosis and if having Chiari rules that out. Both still believe I have fibromyalgia. And that it is a separate illness regardless of the overlapping symptoms. In a group I belong to on facebook, this girl tried to tell me how I was diagnosed is not how they diagnose fibromyalgia and mentioned a blood test to determine that you have it. I asked my rheumy about that and he said he has never heard such a thing and the only way of diagnosis is by doing a physical exam and asking about symptoms and checking the tender points. I have the tender points. Have had fibro for many years. Lots of nerve pain and muscle weakness.

My neurologist said he wanted me to take magnesium to help with pain and melatonin for sleep. He prescribed fioricet for my constant headaches. It helps a lot. I don't have to take fioricet constantly as I can deal with the dull headaches. But when there is a headache that becomes full blown on the verge of migraine, that med really helps. He also increased my Lyrica from 2x daily to 3x daily which helps more then it did.

I recently went in for an EEG that he ordered and I am supposed to go in for a carotid ultrasound and he was referring me back to my heart doc for that. I see him again on Nov 13th to follow up with the EEG results. I could not sleep even though I had slept very little anyway because they want you to be sleep deprived.

My rheumy said magnesium was good for muscle and nerve issues and upping the lyrica is good as well. He made the observation the other day that I looked good and seemed to be at peace with whatever was going on with me health wise and said he was happy for me and that a lot of people don't ever get to that point. Truth is, there is nothing I really can do since there are no cures for these illnesses. So yes, I need to accept that this is my life and this is just how its gonna be. And while I do not enjoy the pain, I at least have names for my issues and that helps me to be at peace.

I am curious about my EEG and what it will show. Do you guys know anything about that test and what they are looking for exactly?

2

Hi Abby, and thank you! Its been pretty hectic not only for me but my kiddos and hubby. My youngest has had appts with behavioral health, and my middle child, we thought he could be diabetic turned out he wasn't thank goodness but I stressed to him the importance of eating right so he does not wind up a diabetic since I am and we have a family history of it. But they think he has a heart murmur. My hubby's diabetes is out of control and he had to have two additional medications added to his lantus solostar insulin. Now he is on novalog and metformin. I keep telling him he needs to settle down with the sugars and learn to appreciate vegetables and drinking water, tea or any other drink other then soda or sugary drinks to help him. He does not seem to get that his meds are not a fix it when his sugars are up. It scares me honestly because I am afraid his kidneys will fail or he will lose a limb as a result. Just a lot of stress there alone. If he can't get the foods he wants because of his addiction to sugar, he gets upset and has a hissy fit. :/

As for facebook peeps, yes they can be pushy. Some of them are not above being dramatic either when it comes to people not wanting to take their advice. I have seen some just leave the group. You guys over here have always been kind and helpful. Which I greatly appreciate. I think all groups should be like this one. Share your experiences and let your members decide whats best for them.

I hope my EEG comes out good! Thank you for explaining that to me. I didn't really get an explanation about what it was for but they did tell me it would not hurt which was one of my big fears. lol

I hope your day is going well! <3

3

Thank you for the info! :) And I will definitely let you know how things go. I am still waiting on the carotid sono to be done, I guess I need to call my heart doc because they have not gotten back to me and its been two weeks since they called and said they needed more info from the neurologist. :/ It was also a chore to get scheduled with the neurosurgeon. They make it hard and nearly impossible to get set up with an appt. But after a month of that, it was finally accomplished lol.

4

Jenna, so glad to here from you it sounds like you have the wheels in motion and getting a great team together.

5

Hi Jenna! It's sounds like you have a really good group of doctors! I hate that you have to wait so long to see the neurosurgeon. Keep us updated on your results!