Aa
Realy need help with this
I am 33 years old and a couple of years ago came down with being tired all the time. Went to family dr and they sent me for MRI blood work and everything was normal so sent me to sleep specialist . I had sleep study and confirmed I was very tired and said I had Hyperinsomulance?? not sure of spelling but its kinda like Narcolapsy... but a year into this my blood pressure has been low so dr said before taking meds to see why it was 90/60. I have these dizzy spells since October 2010 which I almost faint and Dr sent me to Cardiologist who confirmed I have Mitral Valve Prolapse, Murmer and Pulmonary Valve regurgitation, The Dysautonomia name came up at Feb appointment with dr when I told him about dizziness. He said Orthstatic Hypotention from the Dysautonomia. My blood pressure has fallen to as low as 67/53. Last week I had a dizzyspell that was followed by shaking of my entire body for a min I just need to know if anyone else has this or can help with what exactly is happening to my body. My neighbor saw the shaking episode and said I needed to go to ER but I did not as I have had some shaking but never that long and she said my eyes looked glazed over when it was happening. Please help.
Hey, I noticed you said you had head pressure....just wanted you to know I had that SO bad for about a week(still have it sometimes)...went to the ER and they did a CT scan and nothing showed up. I attribute it to POTS....they couldn't figure out another reason. I also have low blood pressure. Motrin seemed to help the pressure. Hope you feel better soon and get it figured out.
Hi j105!
How you been doing, i read a whole lot if your symptoms and the amount if test and Drs visits! Its crazy and i feel horrible that you had to go through all this. Would love to know hiw you been?
How you been doing, i read a whole lot if your symptoms and the amount if test and Drs visits! Its crazy and i feel horrible that you had to go through all this. Would love to know hiw you been?
Well the Great Physician knows exactly what the trouble is and I prayed God would give your earthly doctors wisdom. I really feel it is difficult to have symptoms that are so severe for you & hope you get relief soon.
He said go back to cardio dr to see if any thing from thier stand point. In the mean time tremors in jaw are getting more frequent and left side of face feels different than right side. left eye is bloodshot on the corner again and I am at a loss . Neighbor thinks something is going on but I don't know why drs cannot tell what it is. When I had kidney stones it took less than an hour to tell what it was. Why drs can not tell what this is is upsetting.
Did he propose you see a cardiologist as well, since he felt your mitral valve prolapase was causing such significant symptoms? 2 mm does sound pretty small, but if you are still concerned about that, I'd ask a doctor if an MRA/MRV on a 3 Tesla magnet machine would give better detail on it. Please keep us posted on the outcome of the June appointment?
Sorry, when you say Mathias word ... was that the name of a diagnosis he was wanting to rule out? Could it have been Myasthenia Gravis, or was it something else? Sorry if that's not it, I might just not know of whatever it is that he was thinking of or maybe I'm just confused about what you meant. (It happens. More often than I'd like, hahaha.)
Well, I'm really glad you're at least getting funneled toward docs who may be able to aide in your diagnosis. We'll continue to "stay tuned" to find out how things go with these upcoming consultations for you. Please remember that you're welcome to keep us appraised of your condition and continue asking questions in the meantime!
-Heiferly.
Well, I'm really glad you're at least getting funneled toward docs who may be able to aide in your diagnosis. We'll continue to "stay tuned" to find out how things go with these upcoming consultations for you. Please remember that you're welcome to keep us appraised of your condition and continue asking questions in the meantime!
-Heiferly.
Yes, Second Opinion Dr told me for head pressure it is probably Migraines, for Dizzyness, Numbness and weird back numbness it is probably Mitral Valve Prolapse Related , The bulge they found in my head is fine it is 2 mm and probably been there for some time . He is at a loss to figure out what is causing Jaw Tremor and recommended me seeing movement disorder specialist. I took a video of a shaking episode and he said he had never seen anything like it before in all his practice one side of jaw was frozen while other was shaking and moving. He said he is not able to help and said I probably need to go to a place like Cleveland Clinic Movement Disorder specialist . Called and spoke to Aunts Nerurologist in Cleveland (They both have Parkinson and mild strokes ) Have an appointment closer to where I live with a movement specialist that Cleveland dr suggested in June. Second opinion dr did say something about possbly ruling out a Mathias word with other dr ...so I am hoping the next dr can tell me what is going on .
Were you able to go to that second opinion appointment today, and if so, how did it come out?
I'm glad your neurologist was humble enough to admit he was at a loss and welcomed a second opinion! Please let us know what happens!
Sorry if someone else has already suggested it and I missed it in trying to get up-to-speed on this thread, but one thought I'm having is you may want to suggest a video EEG in an epilepsy monitoring unit if that hasn't been done already. That's an inpatient EEG that can last up to (or even longer than in rare cases) a week where you are continuously hooked up to the EEG and are also under constant video surveillance (except when washing up and using the restroom). They do everything they can during that week to try to provoke your episodes to see if they are indeed seizures, and to get a video and EEG recording of them (for example, they take you off any medications that possibly inhibit seizures, sleep deprive you, stress you in other ways like making you exercise if they think that will help, use flashing lights, hyperventilation, etc.). That would be superior to you having to wire your house for surveillance to try to "prove" your shaking episodes are real!
It's so sad when we have to jump through so many hoops to prove ourselves to doctors. So many of us have been down the road you are going down now. This will get better. You will start getting more answers eventually. Hang in there and be persistent. Keep talking to us. We're here to support you as best we're able.
Nice to meet you and sorry it took me so long to chime in here.
-Heiferly.
It's so sad when we have to jump through so many hoops to prove ourselves to doctors. So many of us have been down the road you are going down now. This will get better. You will start getting more answers eventually. Hang in there and be persistent. Keep talking to us. We're here to support you as best we're able.
Nice to meet you and sorry it took me so long to chime in here.
-Heiferly.
Second Opinion scheduled for May 12 so hopefully that dr can make sense of the symptoms and be able to tell me why one year ago MRI normal and now this one shows that bulge but my current dr said it is an incidental finding. Nero Dr called me again and said that he has run the tests he thinks would rule out problems and does not want to put me through any other testing. He said I should wait to see what symptoms will do in 6 mo to a year and if they get worse or change then he might be able to make diagnosis ?? He was thinking Fibromyalgyaia again but said that does not cause the facial numbness that I had. I think he is looking for anything that fits and thats what he is going to call it Told him I am seeking a second opinion he said that he is agreeing to that as he is at a loss to figure out what this is. Blood Pressure was very low this morning but when I mention that they tell me to eat more salt so I did not even bring it up to him today. Have cameras in house set up so if I have a shaking episode i can grab and record.
Those are excellent ideas about letting someone call 9-1-1 for you, as well as getting a second opinion!
An EEG can be normal and you may still be having seizures. my son has had seizures for several years and just now his EEG came out positive. He had two that were negative but he was clearly having seizures. It just makes me so angry when dr.'s don't know the answers and rather than admitting they don't know they say 'conversion disorder' or you are just 'stressed.' I would suggest reading this book "My imaginary illness' it is about a young woman who was very ill and doc's kept saying she had a conversion disorder-turned out she had a rare form of an autoimmune disease called 'myasthesia gravis.' Also you can have seizures from Dystanomia-I know of another person who has them. I am sorry you are going through this. I have had doc's say some off the wall things to me because they did not know what i had for a long time.
Dr said normal EEG actually went to sleep during it according to him. He said at this point he is calling it a possible conversion disorder till down the line with symptoms. He has ruled out everything major he said so I looks like I am getting a second opinion as the only thing that is causing me stress is what is happening to me. Which no one can figure out. Next time dizzyness/shaking happens in front of person who wants to call emergency I am letting them as this is getting ridiculous not being able to tell what this is.
Still no answers called dr office Monday and today and they have yet to call me back. I the mean time Saturday episode of shaking while handing neighbor garbage can lid started jaw shaking had rush to garage to avoid questions about whats going.
Hi, this does sound like a seizure to me-usually these will set off migraines. I was just diagnosed with POTS and CFIDS and have severe migraines. My son has epilepsy and I have been doing research-from what I have read and heard from others in severe cases of dystanomia you can have seizures. Just so you know even if you EEG is negative, you still may have had a seizure. My son's were negative at first and he has seizures all the time. Only after he had a very long one (over five minutes) did they show on an EEG. Dystanomia is also related to autoimmune diseases. I would have them check an ANA-ASAP. You can have central nervous system involvement with vasculitis and Lupus. My doctor also is planning on giving me a spinal tap because my bloodwork showed neuro imflammation and because of my headaches. I wish you luck-this is a very complex disease. Please let us know what happens
I think sometimes techs may not always offer accurate timing of turn around time on results. Interested to find out if it showed anything! Was the scoliosis characterized as mild, moderate or severe?
Yes DR said the MRI was of cervical spine. Scoliosis is in cervical spine. Called today and they said give them a few more days for the EEG results and try back Monday. Tech that did the EEG said results should be done next day so not sure on how to take that . Hopefully something will show up on that as I did have a few min of shaking in Drs office while hooked up to EEG monitor. Jaw bounced around fast. So maybe they are still trying to tell what that was I am not sure but will post results.
Did the MRI include the neck part of the spine?
Scoliosis- a curvature of the spine- I have some of that myself, as does a sibling- what part does it say that's in?
Has the doc looked now & still doesn't think swelling at back of head/neck could have anything to do with cerebrospinal fluid? Did they order the EMG test they figured on doing after the MRI as well? Please let me know how EEG comes out?
Scoliosis- a curvature of the spine- I have some of that myself, as does a sibling- what part does it say that's in?
Has the doc looked now & still doesn't think swelling at back of head/neck could have anything to do with cerebrospinal fluid? Did they order the EMG test they figured on doing after the MRI as well? Please let me know how EEG comes out?
MRI normal for spine except for scolois? which i have never had before this . talked to Dr about finding out sooner than later and he ordered a EEG test which I am having done tomorrow afternoon. He said that sometimes tremors and balance Problems could be result of seziures? He is at a loss to describe the tremors,head pressure ,shaking,numbness left side of face now in back area and the obvious dizzy and tiredness that have been ongoing. He was thinking Fibromyalgia but he said that does not cause shaking/tremors so he is at a loss. Jaw tremors are getting more noticeable daughter is asking why I am so cold all the time and I have tried biting my top lip or clenching both lips together when it happens but it still does not stop it. Hope tomorrow is the day they figure out what is wrong with me
Why is the doctor waiting 4 to 6 WEEKS? I don't understand unless he's intending to also refer you to a specialist more knowledgeable in the appropriate medical field for your symptoms? Glad you expect MRI results tomorrow- please let me know how it comes out?
Dr scheduled followup for 4-6 weeks and will let me know MRI results monday. Radiologist that did MRI could not tell me anything just said if its a immediate matter that my dr would call me. Yesterday while eating dinner I had a shaky dizzy episode went to stand up and whole body started shaking had bad head pressure while it was happening over in a few min . Not sure what this is but I am getting worried about these shaking episodes. Neighbor thinks they could be mild seizures but I am fully awake and know what is happening to me I just can not control what happens so I don't think they are that. I may seek another opinion if Dr can not tell me what this is soon.
Iam really sorry that you are going through all this health problems.
I have chronic fatigue syndrome and POTS , one of the viruses among others that we have high is the Epstein Barr , have they ruled out CFS ( chronic fatigue syndrome) in your case?
I am not sure where you live , but I have one of the best drs for cfs i( Florida)
take care , hope you find the help that you need,
I have chronic fatigue syndrome and POTS , one of the viruses among others that we have high is the Epstein Barr , have they ruled out CFS ( chronic fatigue syndrome) in your case?
I am not sure where you live , but I have one of the best drs for cfs i( Florida)
take care , hope you find the help that you need,
So does he think it isn't possible there is an increase in cerebrospinal fluid or spinal meningitis? Please let me know the outcome of tomorrow's MRI? Do you have a f/up w/him scheduled for next week?
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