I have had test out the gazoo! I have a great neurologist, a rhuematologist, a cardiologist, and primary care. They say the hair loss is stress. My thyroid was low on my last set of test, so they are running a full pannel on it. I have spent 4 weeks total this year on 4 different occasions hospitalized, and have great doctors. My diagnosis has been confirmed by both my neurologist and rheumatologist, so I am pretty sure they are right. I also have other disorders, such as seizures, so that is why I am on so much meds. I have had a lot of seizures, so in order to keep my drivers license they have to be in control. All my doctors work together, so my meds are watched carefully. I am actually hoping my hair loss is related to my thyroid so it can be fixed. But I can assure you that I am not self diagnosed, and that all my issues are monitored my my doctors. I was just very happy that I didn't have lupus, or MS. Even though my docs still think they are possible, I have no official diagnosis on those. I refuse a spinal tap, so they can't confirm or deny the MS. They tried two spinal taps, both put me in seizures, so I could have been paralysed. That is why I refuse a third. I have MRI's twice a year on my brain, and have a monthly EEG, and a yearly EKG, but in the past year I have had 8 EKG's and about
20 EEG's. So on top of the fibro, there are other issues. Trust me, I am at one of my doctors every week, which is hard because they are 60 miles away, and a lot of the time that drive can cause seizures so I can't drive myself. The hardest part of all of this is the pain. That is why I guess I am so low right now. I can handle everything else with a smile on my face, but this pain, this flare up is almost unbearable. I thank God when my hemiplegic seizures kick in and I am paraized on half my body, then I only have half the pain to deal with. So, is it true that fibro does have flare ups? Or can it get to a point that it just keeps you in pain forever? I am sorry to sound so down, but it has been a really rough few months, and I feel like I can't just smile about
And Jeanie, you are right, I talked to my hubby, and he understands. I am just being down on myself he said. I got up to do laundry, he stoped me and said I need to take care of myself, not everything else. So thank you for your advice. I do have a family that understands, I think I just need to come to terms with letting myself rest and heal.
And thank you to everyone else. I don't feel so alone here. It is nice to talk to people who understand and are going though the same thing!!!!!!!!
Fibro, Hemiplegic migraines, Seizures, Abnormal Heart rhythms, Sleep apnea..... Trilepital 1200mg, Keppra 1000mg, Ativan 3mg, Klonopin 3mg as needed, Oxycotin 20mg 2x daily, gabapentin 600mg, Altenenol 50mg.
Post Edited (Amber Jo) : 2/10/2009 11:21:30 AM (GMT-7)