Oh wow Que, that really brought up flags for me! Why didn't I think of anything like that, you are super. I actually come up on blood work as always have high Co2? And after having my gall bladder out, something was really low, because they came in and asked me questions, like, was a marathon runner. I said LOL gosh no I can't do anything now and was never a runner.
I am actually awakened constantly during the night and get very poor sleep. I do have the leg nerve damage that drives me insane.
You have really gotten me thinking now. Thank you
J Fiz
I have noticed when I start losing sleep after several nights in a row they accumulate into worsening of symptoms(not new) for a week or two. Weakness especially more pronounced and more spasms in legs. Neuro says loss of sleep truly affects your body from healing/resetting. When I am bad, I use klonopin and ultram together. Then of course bladder doesn't work but I sleep without up/down all night long. How is your sleep pattern? Is that a crazy question? I have not read a lot of your posts. I don't know how old your sweet baby is. If your foramen ovale is patent you may be thinking you are getting sleep but actually having very inadequate sleep b/c of oxygen saturation level being lower than normal and making you restless.???? Sorry, I am going on and on now... Que
lol gals, I'm so glad you understand!
Quix, what do you think could be causing the 'spells' as we call them? They are debilitating, as I know you all know very well. Would you agree that the normal Vep and non changing MRI would lean away from MS? Could the Ebv be causing these sections of time where I am more incapacitated, maybe where it regains a stronghold for awhile? Why can't I fight off the Ebv like a normal person? Sorry for so many questions. I always have questions and so few answers. :(
Hugs
Jazzy
Yup! I just had a "flooging" from Quix in another post. Anything new and exotic is welcome here!
Marcie
Well, spiring is fine. I read it okay. I am about to ask that the forum accept a new spelling for "because". This new spelling will be "becasue". That will cut my editing time by about one third. I NRVER, ever get it right the first time and sometimes it's three or four!
Actually, since neurology is not my field - I always thought that the damage from strokes was static. It can improve, but the damage from it should not have a waxing and waning appearance. But, I suspect your "neuro" system is so out of whack that nothing is really predictable. Since you aren't having NEW symptoms appear, just exacerbations of the old symptoms, I would not expect new lesions.
Quix
LOL Oh my goodness, see how the brain functions. ROFL aspiring - of course that should be aspirin. Ok just tried to type that and typed aspiring 3 more times!
J.
Sorry, I forgot to say that they have me on just aspiring now until I see the heart surgeon in a couple weeks, no plavix or anything.
Hugs
Jazzy
Hi Quix, I am so thankful for your thoughts on it all. I wanted to wait until I was able to think at least somewhat clearly to write back. Thankfully my brain is partially functioning today, yay!
I am not sure if the Neuro or anyone has ever checked for the Hughes sydrome. I have never heard it mentioned by him. He says that this latest MRI doesn't show him anything new or different, that the last one, which was a good year or more ago, looked very similiar. So if I am understanding it correctly, I had two strokes when I had the baby and they still show up on there. Would that be correct?
Yes, during/after the pregnancy my body seemed 'reset' at this different level - I would say at 25% of the old me. Since that time, there have been periods of time where things were even worse. These will last weeks or even more. Then they will seem to resolve somewhat and I will go back to being my '25%'. Never did return to the original body or strength I had.
The symptoms are always similiar - more weakness, fatigue, the inability for physical activity, muscle spams, extended headaches, shaking arms and legs, the whole list.
Sometimes during these periods, I actually feel like I am dying, like my body is very close to 'giving out'. At first of course it was massively frightening, but now it has become like, the norm, :( and it is just something to deal with now.
I am not sure I think he is completely right in thinking that the Tia's and Ebv are the cause of it all, but he should know much more than I, right?
I have definitely had improvement this year of being on the anti virals, so this sometimes makes me lean toward him being correct. I just don't know. I have been thinking the same as you, that if the last few years problems have been caused by more strokes, wouldnt' that show up on the MRI?
I wish I could buy a working crystal ball on Ebay. LOL
I deeply appreciate all your thoughts on this
Jazzy fizzle patizzle. :)
The way I have been picturing your problem is this. When you were in severe diabetic, ketoacidotic coma and in the ICU you were so dehydrated (this is always the case with DKA) that your blood became like sludge. When blood thickens this way it often causes strokes -sometimes bad ones. So this episode is probably responsible for the problems you have suffered that date back to that time.
About 25% of the population has a patent foramen ovale, but when it is widely patent, strokes are more common. But, the vast majority do not have early stroke because of it, obviously. Something about your condition since the pregnancy seems to be responsible for causing the ongoing TIA's or ministrokes. For some reason you may have become more prone to forming clots or hypercoagulable. I assume that the cardiologist or neuro has done a THOROUGH look at all the things, including Hughes Syndrome that increases your susceptibility to clotting. Since the pregnancy triggered one autimmune disease (Type I Diabetes) could it have triggered another?
The reason I am pressing is that if you are having TIAs, you should have prompt and complete resolution of your symptoms. But, you say you're not. You are having new symptoms that do not completely resolve, right? So, by definition you are having small strokes. These, I would think would show up on the repeat MRI's - No?
This is the point that is currently confusing me. Have you seen a hematologist to evaluate the entire chain of coagulation factors? One of our members, and I think it is Siddy, was found to have Factor V Leiden, predisposing her to strokes. Have you have any new symptoms since they began thinning your blood with ? Plavix?
Or are you saying that since the coma, you have periods of the problems being worse, but then they get better, but never back to the way you were before the coma? If this is the situation, then what the MRI shows is the scarring from the bad strokes from the coma. And, you may not completely 100% regain what was lost then.
Garbled? Quix
Why leave? Home is where the heart is, right?
The article is titled "risnerrose" . . . I was still forum illiterate at that time.
Okay . . . picture this.
Neurologist enters room and says, "You have several foci indicative of small strokes". He realizes I had an MRI a year earlier (which he had said was normal), excuses himself to compare films, returns, and says: "The lesions were present on both MRI's." I was speechless. Within 5 minutes my diagnosis was flip-flopping. I have since had an abnormal LP and am seeing an MS specialist. I'm very aware that had it not been for the earlier MRI, I would now be dealing with a stroke diagnosis and whatever meds are used in that treatment.
I will try to go back and bump up some of my earlier posts. I believe this was when I finally joined this forum.
By the way, I did have carotid ultrasounds and echo of heart . . . all were fine.
Hi, Jazzy!
Gosh, I'd hate for you not to hang out here! I had wondered where you had gone. Worried, thought you might be having some really bad days.
Glad to 'see' you! :)
Hugs,
Sheila
You bet you belong here. We are all family and if one leaves it's like loosing a member of your family. Stick around and have some fun with us. We have missed you and welcome home.
I'll be praying,
Carol
OH thank you gang. There is no place like this!
I guess the ones showing on my MRI are not considered TIA's then? They are called -
'area of bright irregularity involving the deep white matter of the periventricular region, right parietal lobe; and small area of increased signal on FLAIR squences in periventricular white matter of frontal lobe. Old small vessel ischemic infarcts' Left side of brain appears normal.'
What does this mean then?
If I am having 'TIA's' since these, is this why I have periods of time of problems and then they resolve to some degree? (Never back to like I used to be)
Sherry, How did they determine they were later lesions? My Neuro completely believes this is stroke and not lesions. What happened with you?
Yes, I am to see the heart surgeon on Oct. 31 to see if they will close the PFO.
Hugs!
Jazzy fizzle
I told you before that you are part of this family and you can't leave us!!!! I am so glad you are back!
Stay with us now!
Love
Doni
Besides you have to hang around here to give weight and validation to the purpose of ruling out MS mimics. See you belong on an MS site! I can rationalize anything!
and becasue TIA are, by definition, Transient, they don't do permanent damage or cause lesions on MRIs.
Me, Too!! Welcome Back. I was sitting here picturing blank post after blank post signed off with frowny faces. We definitely have more pizazzle for J-Fizzle!
Quixizzle
HI!!!!
You belong here! Of course I can't answer your question, but I got a good laugh out of your pausing sobs, and your explanation of the friendless, speachless forum!
Glad to see you still around!
SL
I lingered between the forums myself and you are so right . . . this is the place to be. I began this summer thinking I was having TIA's, but the foci on my MRI were referred to as "small strokes" (ends up they were lesions, long story). If I understood my info correctly TIA's and mini strokes are the same thing and do not leave permanent damage; in fact, they seldom show up on an MRI. Small strokes, which are different, do show up on MRI's and do leave permanent damage.
Are you having other tests? Didn't you say there was a surgical procedure?
So great to hear from you
Sherry
Hi friend,
Don't have the answer but just soooooo glad you came back to us...
you were missed.... sorry that the other forum is not so friendly... this is a great place to hang out...so, hang out with us.
Glad to hear from you.
I am sure you will get an anwer soon about the tia/mri issue.
God bless,
Frann