MNsue Posted March 17, 2006 Report Share Posted March 17, 2006 Does anyone else with POTS have days when it seems more difficult to balance? The MD's have ruled out MS, but I have days when my left side is weak and I am more unsteady. I also have lots of tremors. I am wondering if this is just part of POTS. Thanks for any thoughts you may have.Rhonda Quote Link to comment Share on other sites More sharing options...
futurehope Posted March 17, 2006 Report Share Posted March 17, 2006 So I assume you've had a neurological workup? Just wondering.I hope you get help in figuring this out. Quote Link to comment Share on other sites More sharing options...
MNsue Posted March 17, 2006 Author Report Share Posted March 17, 2006 I have had every test possible in Neurology. They can't explain the weakness or unbalance.I seem to be a medical mystery. Rhonda Quote Link to comment Share on other sites More sharing options...
kmpower Posted March 17, 2006 Report Share Posted March 17, 2006 So the neurologists have probably ruled out the bad stuff like strokes and tumor. I think that my EEG abnormality was because my brain has periods of not enough blood, even though the body measurements (BP and heart rate) are not so bad at the moment. I think it is especially when my BB peaks about 3 hours after I take it. I read a study on PubMed about the brain controlling blood differently than the rest of the body, so it can have its own problems.If the frontal and parietal lobes of one side of your brain are getting less blood at the time, they may not act right and give opposite side body weakness. It can also be a brainstem (cerebellum, actually) weakness on the same side of your body weakness. Our blood flow dysregulation sure can cause uncomfortable symptoms. I hope your unbalance gets balanced soon.OLL Quote Link to comment Share on other sites More sharing options...
Clairefmartin Posted March 21, 2006 Report Share Posted March 21, 2006 I get the same exact sensations Rhonda, and it usually is my left side and includes my eye feeling week or droopy, and my vision getts fuzzy. I have major tremor feelings too...but they are rarely visible, but I FEEL them! I had an EEG last week, still waiting to hear what's up, it probably came back normal as usual though so I am not getting my hopes up.I am going to see en eye doctor this week to rule out MS, my PCP says that even though my MRI looks ok early MS can still be present. I'll let you know.....Good luck! Quote Link to comment Share on other sites More sharing options...
Be Still Posted March 21, 2006 Report Share Posted March 21, 2006 Just thought I'd mention:I've been reading on this site for about six weeks. This subject of one-sided weakness comes up repeatedly and it is always on the left side and frequently is accompanied by some comment about doctors not being able to find out what is wrong.As for myself, this is present, but not pronounced, mostly my left foot tripping me.BTW, tearose reported some sx improvement by exercising her nondominant hand.Keep posting this stuff, we are creating quite a database of information for any doc who is curious to check, (or maybe just us couch researchers. Right, Lady of Light?) Quote Link to comment Share on other sites More sharing options...
kmpower Posted March 21, 2006 Report Share Posted March 21, 2006 Oh, where is that study when you want it? I will try to find it since I printed it out and put it in a logical place.Anyhoo, last fall at PubMed, I found a study which says that when orthostatic patients are tilted up and down, the right side of the frontal lobe is what doesn't fill and empty like the rest of the brain and like on normal people. Right sided frontal lobe means left sided muscle weakness. I had a screening blood flow test which showed my right frontal lobe had some problems, but it didn't show up on my EEG. The right brain is much more associated with autonomic regulation per lots of researchers. Maybe when our brain fogs up, the right fogs more.OLL Quote Link to comment Share on other sites More sharing options...
bttrflyamby1981 Posted March 21, 2006 Report Share Posted March 21, 2006 I never noticed if the weakness I have is more on the left side or not. I guess I should pay att.I do know that when I get migranes they are mostly on the left side, would that be related?The only reason I was aware of this is because I did a log on the migranes I had.Maybe I should do the same with the POTS symptoms.Amber Quote Link to comment Share on other sites More sharing options...
MNsue Posted March 21, 2006 Author Report Share Posted March 21, 2006 Thank you everyone for your input. My left side weakness is better this week, and so is my low pulse. I think it must have to do with circulation. The tremors are still very bothersome.I see a new specialist at the U of M on Thursday. If I find anything out I will post it. Rhonda Quote Link to comment Share on other sites More sharing options...
dianaD Posted March 21, 2006 Report Share Posted March 21, 2006 Hi,Im going to buck the trend here. My symptoms are on my RIGHT side. But it isn't weakness per se, but those horrible shakes. But why the right side? My neurologist just shrugged, and said, "Well, it is a neurological condition". And one we don't really understand, too....Sometimes it feels weak, but when tested, it is just as strong as the left side... Weird.Aren't we special? Quote Link to comment Share on other sites More sharing options...
Sunfish Posted March 21, 2006 Report Share Posted March 21, 2006 i have "notable" left-sided weakness from top to bottom but 95% of the time it's not something i notice unless getting "tested" by my neuro or PT. residual from my traumatic disk herniation (C4-5) and related muscle injury several years back could explain weakness in my shoulder/arm but as for lower body/leg who knows.i would be very interested to see the mentioned article if you do come across it lady...as i'm sure my neuro & PT would as well. melissa Quote Link to comment Share on other sites More sharing options...
kmpower Posted March 22, 2006 Report Share Posted March 22, 2006 Hi. I found it.Head-down maneuvre in patients with a high symptom score for orthostatic intolerance reveals impaired right frontal lobe vasoreactivityhttp://www.ncbi.nlm.nih.gov/entrez/query.f...l=pubmed_docsumShakes might be a whole different issue, DianaD. Do they occur with using your right side, or when you are not using it?OLL Quote Link to comment Share on other sites More sharing options...
MNsue Posted March 23, 2006 Author Report Share Posted March 23, 2006 Thank you for the acticle. I have the shakes everywhere, not just one sided. I can feel them even when I am in bed resting. I used to be able to blame it on coffee, but since I have had a recent flare, I have given up all caffene and most sugar. I guess I must be desperate Quote Link to comment Share on other sites More sharing options...
Richland acres Posted March 23, 2006 Report Share Posted March 23, 2006 Yes Rhonda pick me! Ha I am like Clair! I have the trembling and all not visable but there. I also am very weak, legs upper thighs, arms and low back. Its hard to climb stairs and hang pictures and such. I also had one sided weakenss and ignored it when I was shopping on a good day. I ended up having a TIA stroke, so now if I feel really weak I just take it easy on that day. My left eye droops a lot, no myasthina gravis been tested for that, also have had more emg's then I care to ever have, one is to many, ha. Nothing positive, so go figure! i know when my bp is low I get shakey inside and am very weak. I thought I could pin point it to what I ate, but it came any ways. Blamed it on sugar, so stopped eating it and I still had it. We sure are complicated! I hope research find more answers some day!!Best wishes,Brenda Quote Link to comment Share on other sites More sharing options...
smiles Posted March 24, 2006 Report Share Posted March 24, 2006 Does anyone else with POTS have days when it seems more difficult to balance? The MD's have ruled out MS, but I have days when my left side is weak and I am more unsteady. I also have lots of tremors. I am wondering if this is just part of POTS. Thanks for any thoughts you may have.RhondaI have recently been diagnosed with dysautonomia but didn't even know enough about it to ask the Dr. what kind. I have a mixure of many symptoms that don't fit neatly into one category. I am unbalanced alot. More so when tired or sick or recovering from infection (which takes me months). I have been thru all the nuero testing and although have symptoms of myastenia gravis all testing was neg. I had to go thru PT to walk again it was so bad. That's when we realized my whole right side was weaker. MRI was fine. I get shakey too. Too many other symptoms also to mention here. Quote Link to comment Share on other sites More sharing options...
MNsue Posted March 24, 2006 Author Report Share Posted March 24, 2006 Yes Rhonda pick me! Ha I am like Clair! I have the trembling and all not visable but there. I also am very weak, legs upper thighs, arms and low back. Its hard to climb stairs and hang pictures and such. I also had one sided weakenss and ignored it when I was shopping on a good day. I ended up having a TIA stroke, so now if I feel really weak I just take it easy on that day. My left eye droops a lot, no myasthina gravis been tested for that, also have had more emg's then I care to ever have, one is to many, ha. Nothing positive, so go figure! i know when my bp is low I get shakey inside and am very weak. I thought I could pin point it to what I ate, but it came any ways. Blamed it on sugar, so stopped eating it and I still had it. We sure are complicated! I hope research find more answers some day!!Best wishes,BrendaBrenda,I am also from MN. Do you also have high blood pressure? What do they think caused the TIA? I asked my MD if my sudden weakness could be a stroke, but the MRI has been negative. I am going in for a single fiber EMG in April, but nothing else points to gyastina gravis or MS. Are you close to Minneapolis? If so what MD do you see?Thanks for letting me know that I am not alone in my strange symptoms. I was told today by my new MD that he is seeing more patients like us. They do not really understand why.Rhonda Quote Link to comment Share on other sites More sharing options...
lizzy Posted March 24, 2006 Report Share Posted March 24, 2006 hi .. you guys are he best.just got home for er .the emt cedcapt me when i passed out and got brain fogg alitle at the store.for the last month i have been getting week on the one side and the other stuff so thank you for bring it up , you do not know how much this site helps me i do not post much but do read alot, but thing posot came on the perfet time ..thank you. Quote Link to comment Share on other sites More sharing options...
Richland acres Posted March 26, 2006 Report Share Posted March 26, 2006 Brenda,I am also from MN. Do you also have high blood pressure? What do they think caused the TIA? I asked my MD if my sudden weakness could be a stroke, but the MRI has been negative. I am going in for a single fiber EMG in April, but nothing else points to gyastina gravis or MS. Are you close to Minneapolis? If so what MD do you see?Thanks for letting me know that I am not alone in my strange symptoms. I was told today by my new MD that he is seeing more patients like us. They do not really understand why.RhondaHi Rhonda,I am actually 45 miles south of Rochester, the cities in North of Rochester, so i am not to close to the cities. They are not sure what caused the TIA, still wondering what is up. I do know that my body gets exhausted easy, muscles are very weak and if I push myself I can go into tremors, the time I had a TIA I had pushed my self. So I now take many breaks and if I cant do things with out it being to hard for me I dont do it. I use to be this strong fit woman and now I am so weak, its ridiculous but I guess there is not much I can do. I exercise daily but do not get any stronger. I feel like I am walking on stilts, like from my knees down are wooden, its a weird feeling. I actually am seeing Dr. Fealy at Mayo. He is awesome!! he is sooo knowledgable. As for the muscle weakness I am waiting to see a specialist. I have had so many emg nothing shows up positive, so they are stumped. My bp goes hig if I do some thing strenous, like carring a pail of water to my dogs, I am so weak and work hard to do it, my bp will go high 168-180 and then it drops suddenly and I collaps. My heart rate will climb high to about 145 and then when bp drop it does to and is so weak its hard to find a pulse. This is all the time. So i am assuming that when I pushed it that day I set my body off into a stroke. Thank God nothing was permament damage. It took about 6 mos. though to get my "normal" functioning back. I tell ya we sure are tough & complex to figure out.Hope your emg goes well.Brenda Quote Link to comment Share on other sites More sharing options...
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