I just returned from my GP visit. We went over my Brain Mri results...She told me that we have to treat the possibility that I may have had mini strokes. While I wait for my Next MRI from the neurologist I will begin taking a cholesterol lowering med. and will be sent for a check of my artery in my neck. She also told me that if it is strokes that I very well could end up with dementia in the future. She stressed the importance of beginning treatment NOW. If I have been having strokes that means the damage is going to stay with my as my brain is damaged.
So if this is what has happened to me...it started last year... I even have a pic with face droop... I tried to figure out why my smile looked like it did... I figured I must have been biteing the inside of my lip. Now I shake all the time... Once again... I have to say...I was trying to tell these Dr.s that something else was not right... something was wrong!!! I wont know for sure until I get the results from the next MRI and the scan of my neck...
Once again I must stress the importance of being your own advocate... If one Dr. does not listen go to someone who will...keep going until you run out of options and then start again... Rule every thing out... research...research...research!!!!! Dr.s HATE that but if I had not demanded an MRI be done of my Brain... well I would be right here where I am at just having no idea that what I am experiencing may not be because of Just Fibro....If your Dr. has not sent you to a Neuro for an MRI... ask that they do... MS should be one thing on the list of things to eliminate before a diagnoses of Fibro should be made... If I had had this MRI last year....(if this is stroke) I could have prevented more damage.
i used to get mini strokes. for me, i had numbness and tingling on one side of the face. twitching as well. i also had episodes where i was acting crazy and barely remembering what happened once i snapped out of it.Yes- they should check for MS!i have never heard of anyone not getting checked for that fiirst. that is crazy. my symptoms have completely gone away now, and i no longer get them. it has been years. i improved so there is hope you might to.
Belinda, I am sorry to hear of all this. Glad to know you seem to be on the track to discovering what is truly going on for you however. Please continue to keep us updated. And yes, I agree, it's vital MS be explored and ruled out before settling on Fibro. Thanks for reminding everyone.
Maria, THANK YOU!!!! I am happy to know that I can recover if that is what is happening. I know that last year was the worst as far as my symptoms... the headaches were horrible... each year I begin what I call a flare (fibro) with twitching above my eye...last year that twitching lasted well over a month and eventually was under my eye as well. It stopped only after the WORST migraine I have ever had...and my whole face would hurt... I clenched my teeth constantly... now I have no idea if mini strokes are what is going on... But I am not going to argue with my Dr on this one. I am just glad she is doing something... I told her before about my symptoms ... heck the last time I seen her I has insisted she send me to a MS neurologist and showed her how my hands and arms were shaking... she told me that she did not see a reason why I could not go back to work at that time...and refused to keep me out longer. WELL I went straight to my Rhumy. and begged him to keep me out and told him that I will be fileing for SS... He agreed to keep me out... and good thing he has. but he also told me that my issues were NOT neurological... I can now say something is going on and I was certain of that... The things that have been happening to me are NOT just Fibro. related... and it may not be MS and it may not be strokes... we still have Lyme to rule out if we turn up empty. LOL
BaltimoreBaby, We live and learn... I do not know why my Drs did not test me for all other things before the diagnoses of Fibro. I know that they will be hearing me from now on...even if that means I have to scream.
Belinda, I'm really sorry about your news. But getting your artery in your neck checked is a very good thing. If it is clogged up, it could kill you. I found this out from my uncl,e who had his clogged artery operated on to unclog it. So even IF you've had a stroke and suffered some damage, finding and unclogging an artery could be life saving for you. I guess what I am saying is that there IS a silver lining to this potential cloud. A gi-normous silver lining, actually.
And Maria, who has also posted to you on this subject shows that even if you have had mini strokes, it may not be as bad as you think. Also, I know for a fact that researchers are using stem cells for treatment in many areas, including the brain. I also read in one report that brain cells can, indeed, grow again with the use of stem cells. And furthermore, I also read this year that researchers now know what causes Alzheimer's and now are looking for ways to stop it. Hopefully in five or ten years, there will be meaningful treatments for it or even a cure.
And finally, your advice to advocate for yourself is spot on! In my opinion, doctors make some idiotic diagnoses, even good doctors, from time to time. You absolutely did the right thing by looking and looking for a good doctor for you. And instead of looking at the glass as half empty - ie, you nay have suffered side effects from the lack of a diagnosis this year, consider the flip side of this: you may have saved your own life or years of poor and ineffectual treament by going to this doctor when you did, at the right time with the right doctor.
Hugs and tea and a cuddly teddy bear to you,
Petunia
PS: I have never heard of a twitching eye as a fibro symptom and that horrific headache sounded extremely worrisome! However, I have read that a lot of people with fibro also get horrific migraines, and they can be bewildering in their symptoms...even mimicking a stroke! Did your doctor consider and rule out complex migraines? (They are the extreme ones that many fibroites get.) If not and if a stroke has been ruled out, you can search through this group's older conversations, as the topic came up at times. If you need my help on accessing some of those conversations, just ask me and I will try to track them down for you.
Hi Belinda, I am so sorry for all you have been going thru. I am glad it seems like you are on the right path to figuring out what is causing a lot of your symptoms. I wish you the best of luck and please keep us updated on how you are doing. Hugs.
Thank you Petunia!!!! I am encouraged and thankful that I did get this MRI. I started a statin drug last night and I am hoping that the ultra sound of my arteries in my neck turns up a dud... I go for that tomorrow. I go the 17th to have another MRI of my brain looking specifically for dymelination...To get a final ruling on MS. I will have to wait until Aug. 5th to see that Neurologist again. You are right being insistant about where I needed to go and what I needed to have done could be the one thing that saved my life (if in fact I am having strokes). No matter what the MRI does say something is going on in this ole head of mine. As for the migraines... I have only been diagnosed with Mirgaines not a specific type... and I have researched and even migraines can leave spots on the brain. Not sure how or why but just that they can... I am determined to get to the bottom of it all and all my symptoms...Thank you again...and for the Huggs, Tea and cuddly Bear...
Petunia Girl said:
Belinda, I'm really sorry about your news. But getting your artery in your neck checked is a very good thing. If it is clogged up, it could kill you. I found this out from my uncl,e who had his clogged artery operated on to unclog it. So even IF you've had a stroke and suffered some damage, finding and unclogging an artery could be life saving for you. I guess what I am saying is that there IS a silver lining to this potential cloud. A gi-normous silver lining, actually.
And Maria, who has also posted to you on this subject shows that even if you have had mini strokes, it may not be as bad as you think. Also, I know for a fact that researchers are using stem cells for treatment in many areas, including the brain. I also read in one report that brain cells can, indeed, grow again with the use of stem cells. And furthermore, I also read this year that researchers now know what causes Alzheimer's and now are looking for ways to stop it. Hopefully in five or ten years, there will be meaningful treatments for it or even a cure.
And finally, your advice to advocate for yourself is spot on! In my opinion, doctors make some idiotic diagnoses, even good doctors, from time to time. You absolutely did the right thing by looking and looking for a good doctor for you. And instead of looking at the glass as half empty - ie, you nay have suffered side effects from the lack of a diagnosis this year, consider the flip side of this: you may have saved your own life or years of poor and ineffectual treament by going to this doctor when you did, at the right time with the right doctor.
Hugs and tea and a cuddly teddy bear to you,
Petunia
PS: I have never heard of a twitching eye as a fibro symptom and that horrific headache sounded extremely worrisome! However, I have read that a lot of people with fibro also get horrific migraines, and they can be bewildering in their symptoms...even mimicking a stroke! Did your doctor consider and rule out complex migraines? (They are the extreme ones that many fibroites get.) If not and if a stroke has been ruled out, you can search through this group's older conversations, as the topic came up at times. If you need my help on accessing some of those conversations, just ask me and I will try to track them down for you.
tryin, I do have memory issues... I just chalked that up to Fibro Fog...Now I am looking at it much differently... I told my GP when she told my about mini strokes being a precursor to dementia... I had wrote in my Journal last year about how I felt like I was a dementia patient. If I am ever under stress it is soooo much worse along with my emotions...
I also have to remind myself that I have sleep apnea with central apneas... and that also told me something was not clicking correctly in my brain...I am not sure if those things will leave lesions on a persons brain or not. by the time all this is done...I will know everything I can about whatever is happening to me... I have always done my research on my conditions...
Just returned from the ultra sound of my neck. The tech could not read the results but what she did tell me was everything looked good and stroke is one thing I could mark off my list....WHHHEEWWWW !!!! Now I can breath...right now I have to get a nap... I have a headache and will be seeing my sleep Dr at 3:45...I will be getting my sleep apnea equipment.... I do hope that I will be scratching strokes off my list officially.
Thanks for the support... I need all that I can get right now...Y'all are the best!!! HUGGGS
Lady, you are having the wrong kind of adventures. I am wishing you a "boring" rest of the month with no more excitement of this kind. Stay strong, Belinda.
Phew, indeed! I'm happy to hear that the ultrasound technician didn't see any signs of a stroke. That's a HUGE relied to you, I'm sure!
I'm including a link to info on complex migraines: i.e., the differing kinds and symptoms. They may be applicable to you or not. I am sure we have some people on here who suffer from them so I'll post the link for them even if you don't need it: http://www.healthline.com/health/migraine-rare-and-extreme-types-of...
Oh, and if it helps you to feel any better, I have a terrible time with memory. Some times are worse than others. If I am tired, I struggle for words, sometimes thoughts and ideas and sometimes find myself lost while driving, although the road is one I use a lot of the time. It's all thanks to the fibro. Yes, it can make you terribly forgetful. If tests rule out other causes, then please try to not feel badly. You wouldn't get mad or upset with yourself for your blood pressure going up, would you? It's also a symptom of an illness, hypertension, just like forgetfulness is a symptom of fibro.
Have a good night, Belinda. I'm sure you'll sleep easier knowing that stroke is pretty much ruled out. And you should also sleep better with your new sleep machine.
MADERE!!!!!!!!! Where have you been? I am hanging in there... all I have to look forward to now is my next MRI... that is next week. On a good note I got my CPAP machine today...that Woman told me she was surprised at my level (it is an 11) she said I was such a petite person and I must have some stubborn airways. I did get the nose pillows... but I have a deviated septum so I am not sure how well this is going to work out I may have to change to the nose mask... only time will tell on that one... I still have a nagging headache... story of my life... GOSH it sure was GREAT to hear from you.
We each have a journey... some of us are certain of the road to take and some of us get at a fork in the road...I am just at a fork right now... But I have always been persistent... just my Drs. need to be convinced... I believe I got their attention at the moment. I told my GP I feel like screaming I TOLD YOU SO!!!!! LOL Now fix me... LOL
Petunia.... Thanks again... I will check out the link. I do not know what I would have done if it had not been for the words of wisdom when I needed them the most... I am going to sleep with that CPAP tonight. I am looking forward to that! My level is an 11. I have to do my homework on that but the woman was like...you are so petite to have a level at 11... then said I must have some stubborn airways... Maybe if I can get some air to my brain my memory might improve...LOL Again... THANK YOU. You were there when I needed someone the most!!!! You just do not know what that meant to me.
I am sorry to hear about your experience with your doctors. I would find it very disturbing to find out I may have had some strokes without being aware of them. I had post concussion a few years ago and had serious memory problems in addition to having black outs and shaking quite a bit. I had to be screened for seizures because of the intense shaking. I was discouraged for two years as my memory problems continued to plague me but finally I have healed and my memory is much better. They say that people who do have post concussions makes them more likely to develop memory problems like Alzheimers. It is a risk but these days my memory seems as good as it was before the injury. I do agree you have to make demands about tests. I told the doctors something was going on with my back and I needed an MRI. I have spinal stenosis. I have had pain in knees off and on for weeks at time and I requested an xray. I have osteoarthritis. You do have to have faith in your knowledge of your body and doctors should just respect that and help you rule out ailments so you can go ahead and treat them. I go to a group practice and I have learned to just stay away from one doctor because he gives me nothing but grief and a very skeptical look. He is young and very arrogant and has an inconsistent bed manner.