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Old 07-30-2008, 02:02 PM   #1
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Is it still MAV or something else??

Hi,

I'm looking for some reassurance. I have had symptoms of what they thought was MAV for almost 3 Years. I feel in a fog all the time. I am always off balance and have trouble walking. I am just off balance all the time. I also have visual issues. I see heat waves on things. Things seem to be moving or dancing. There have been alot of other funky things also. I have always had some better days and some worse. In March things seemed to get worse with my balance. I started having muscle twitching. I did have low vit D and was treated for this. I also feel kinda weak alot of the time. I went to a neuro for a second opinion. He wondered if it was some sort of cerebellar degeneration. If you read the symptoms it could be. Since March I have been going for 2nd opinions and not really coming up with much. My neuro otologist is now saying to take the neuro route and see what happens. One neuro says it still could be MAV the other wants to do a spinal tap. I am scared out of my mind. At the same time, I am wondering if I just created this by continuing to not trust my MAV dx. All my MRIs have been normal. . The anxiety is about to put me over the edge. We all know how much that helps the symptoms. Does anyone have any thoughts or advice?? Thank you so much in advance.

CK

Last edited by cknmbbl; 07-30-2008 at 02:19 PM. Reason: more info

 
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Old 07-30-2008, 03:17 PM   #2
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Re: Is it still MAV or something else??

Gosh I am so sorry that you are going through all of this. I do have MAV or mine is really Migraine Syndrome. Alot of the things you described I can relate to. Some things I am not to sure, but really when we describe feelings and sensations, our the words we chose to describe could just be different. I know that I have been REALLY anxious in the past and had myself dx with all sorts of things and I was truly convinced!!!! I am wondering if you should trust the 1st dx and begin treatment for Migraine? I am assuming the Neuro's did all the different testing that they do? and you said your MRI's are normal, so all of this is good!!! What treatment did the doc want to do for MAV?

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Old 07-30-2008, 04:25 PM   #3
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Re: Is it still MAV or something else??

I can relate to EVERYTHING you have said, including the heat waves on objects, the fact that objects are always moving, and the muscle twitching. I have it all!! The thing that HELPS you here, is the fact that you have had this for 3 years, and you are still walking and talking, and all your MRI's are still normal. I have been researching cerebellar degeneration, because oddly enough, I was starting to think that was MY problem as well, and I have read many case studies, and most people do NOT get 3 years from the onset of symptoms, to where you are, without having REAL cerebellar symptoms. The problem with the cerebellar diagnosis for you right now, is that you aren't having any TRUE cerebellar symptoms. Here is an excerpt about typical cerebellar symptoms:

<<<Symptoms: The most characteristic symptom of cerebellar degeneration is a wide-legged, unsteady, lurching walk, usually accompanied by a back and forth tremor in the trunk of the body. Other symptoms include slow, unsteady and jerky movement of the arms or legs, slowed and slurred speech, and nystagmus -- rapid, small movements of the eyes.>>>

Don't forget, you would most likely have abnormalities on your neurological exam. Do you have an abnormal neurological exam?? 3 years is a long time to still come up with nothing on your MRI/CT scans. I would have expected you to have problems much sooner. I am 6 months into my symptoms, and I am about where you are now. So I'm a bit more frightened, because I don't have TIME under my belt. Anything can still happen for me. 3 years is a pretty good cushion.

I think it's a little irresponsible for your neuro to suggest a cerrebellar degeneration problem when your neurological exam is normal, and your MRI is normal. Something doesn't sound right. Is this something HE said, or is this something YOU have talked yourself into?? It sounds like he is grasping at straws because he doesn't know what is wrong with you, and he has probably checked you out 100 times with no conclusions. You and I have VERY similar symptoms, if not EXACT, and they can't find anything wrong with me either. I was diagnosed with migraine. Migraine doesn't show up on scans. This could be fate that we found each other here. No kidding, I was just looking up cerebellar degeneration not 10 minutes ago before we were talking. The symptoms are not what you are describing. Have you ever watched a sobriaty test on COPS? that would be more or less what it's like. Alocohol incapacitates your cerebellum which is why you can't coordinate yourself. Your first signs of cerebellum degeneration would therefore be related to those specific areas. You would have problems with finger-to-nose (which doesn't require walking if you have a TRUE vestibular problem, and would certainly be affected by the cerebellum as well), and other than be imbalanced, you would have coordination problems between your hand/limbs, you would KNOW something was not right. Does that sound like what you are having?? Doesn't seem like it. See what the neuro says, and perhaps a lumbar puncture would not be a bad idea but cerebellar degeneration, after 3 years of symptoms, and STILL with near-normal motor skills and normal MRI??? Sounds odd to me

Rich

 
Old 07-30-2008, 07:05 PM   #4
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Re: Is it still MAV or something else??

Thank you for your replys!!!! I have been a wreck. The neuro that said cerabellar degeneration I have not been back to. I was so freaked out when I left. He told me he would be in touch....he never called . That is when I went back to my neuro otogist. He wasn't sure, but thought that my gait was a little concerning. He made an appt for a second opinion. My neuro exam was ok other then a little spasticity on exam. I have told myself alot of things can cause that. He ordered another MRI which was normal. He said to come back in aug. and we would talk about the spinal. In the meantime I made an appt with another highly recommended neuro. He thought migraine and suggested a scop patch. I have been on inderal in the past to no avail. I have tried a few other things, but had issues with side effects. Maybe it is meant to be. I have been praying for a sign or some kind of info that points me in another direction to come about. I just feel horrible when I can't walk into a grocery or make dinner or any of the other little stuff that has become overwhelming. I need to make peace with the dx and find a new "normal" for my life. You mentioned you had this for 6 months. What meds have you tried?

 
Old 07-30-2008, 07:48 PM   #5
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Re: Is it still MAV or something else??

a scopolamine patch for intractable vestibular migraine?? This guy doesn't know what he is talking about. You need a migraine PREVENTATIVE for what is happening to you. That patch is useless. I wouldn't go back to that guy.

As far as your exam goes, the spasicity could be from anything. Are you limiting your movements? have you been in bed or limiting your activities a lot? That really isn't specific to the cerebellum anyway. You have NO cerebellum signs lol at all, after 3 years with this thing lol. And a normal MRI. You might not be in the clear, but your looking pretty darn good! I'd get into this other neuro right away, and see what he has to say. Did you ask this other neuro WHY he thought there was cerebellar degeneration?? Where was the evidence for this??

I am only on Topamax right now, which is stablizing me, but not giving me any miracles. I am trying Effexor next. Chances are, our conditions are not some rare neurological condition. It doesn't fit the profile! I'd be lying if I didn't say I was nervous about my own senerio, but you have 3 years under your belt and you are still walking and talking and on top of that, your MRI is still normal. You are looking good.

What exactly are ALL your symptoms and when did it start? How old are you?

Rich

Last edited by Boslee2008; 07-30-2008 at 08:28 PM.

 
Old 07-31-2008, 10:50 AM   #6
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Re: Is it still MAV or something else??

I am so glad to talk to you. My symptoms started about 2 1/2 years ago. Around Thanksgiving I was feeling kinds dizzy and anxious. Then off and on the next two months I would feel like I was falling side to side just out of the blue. Then in Feb, I walked my daughter to the bus stop and all of a sudden I just couldn't walk. I felt dizzy, but not in a spinning way. My dr said it was a panic attack. I spent about 2 weeks in bed. After that everything just changed. I'm always in a brain fog. I have ALOT of trouble walking. If I'm standing I feel like I'm weaving and sometimes I am. I'm not as sharp as I used to be. I do get bad headaches sometimes. I get alot of muscle twitching. Feels like I have trouble holding my head up at times and just general weakness. My vision is always shaky. Things seem to be moving. When I lay down it feels like someone is moving the bed. I feel crazy half the time and sound crazy the other half.
I'm 40 years old. I used to excercise, but don't anymore. When I feel better I do get on the treadmill. I can't even walk around the block because of the dizziness. This has been very hard on my family. Thank God I don't have to work. What is your situation? What was your onset like? And age?

CK

 
Old 07-31-2008, 02:08 PM   #7
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Re: Is it still MAV or something else??

I really want to help you sort out some of this so I want to try and get more specific.

<<<I am so glad to talk to you. My symptoms started about 2 1/2 years ago. Around Thanksgiving I was feeling kinds dizzy and anxious.>>>

First, can you explain this further?? What does "dizzy" mean? What was it like? Was it violent spinning vertigo, like tumbling round and round?? Was it like feeling drunk, like being on a boat?? Did it have a lightheaded quality to it?? Did you feel like you could pass out at any moment?? Did head motions make your symptoms worse??

Also, tell me about the anxiety. What came first, the dizziness or the anxiety? Or, did they come on at the same exact time?? Were these intermittent spells that would soon stop?? When the dizziness stopped did the anxiety stop?? Was there anything else going on in your life just prior to these attacks??


<<<Then off and on the next two months I would feel like I was falling side to side just out of the blue.>>>

First, were the episodes you were talking about above continuing, or did they stop?? Now, these sensations of falling, were they feelings like you just couldn't stand upright, or did you feel like you were being pulled or thrown to the left or right??

<<<Then in Feb, I walked my daughter to the bus stop and all of a sudden I just couldn't walk. I felt dizzy, but not in a spinning way. My dr said it was a panic attack. I spent about 2 weeks in bed.>>>

What do you mean you just couldn't walk?? You physically could not initiate any muscle control over your body?? Or the dizziness was bad and you had to sit?? Was there an anxiety component either just before or at the same time?? Was the dizziness the same as the episodes around thanksgiving?? Can you think of anything that might of initiated them?? How did you get yourself home??

why did you lay in bed for 2 weeks?? What finally got you OUT of bed??

<<After that everything just changed. I'm always in a brain fog. I have ALOT of trouble walking. If I'm standing I feel like I'm weaving and sometimes I am.>>

Balance problems typically cause mental fogginess and although it is scary, it's very non-specific and doesn't mean you are in danger. Weaving and an unsteady gate can happen with inner ear problems, migraine, Mal de debarquement, as well as neurological conditions but with neuro conditions, especially after being symptomatic for years, you would expect abnormal neuro exam and scans. Yours are normal.

<<I do get bad headaches sometimes.>>

This could be the migraine/anxiety aspect because there is no structural reason for your headaches as evidence from your scans

<<I get alot of muscle twitching.>>

Where are the muscle twitches?? Are they always in the same place?? Are they in different places?? How long do they last?? This can be neurological but they can also be related to stress and anxiety. These are non-specific indicators and don't tell specifically anything that's happening. Are you taking ANY medications that could be causing this symptom?? I'm on topamax which can cause muscle twitching, and my muscles have definitely have been doing this more since getting on the medication. Not exercising, eating strangely, and low vitamin levels can do it too. My vitamin D level is extremely low as well. So that could be where this is coming from. I also wouldn't be surprised if this could come from the migraine itself.

<<Feels like I have trouble holding my head up at times and just general weakness.>>

hmmm. Have you lost weight?? Are you eating and drinking enough?? Have you been to a doctor to check your blood pressure?? Here's a clue...do you get lightheaded when you go from a laying down to a seated or standing position?? Do your legs "give out" or shake when you walk?? Probably not, as the neuro would have picked all this up. This could be the stress you are going through. Be honest, has this gotten worse since the stress has gotten worse?? I can tell you flat out that my condition has gotten FAR WORSE since my stress/anxiety has gone up. I wake up in the middle of the night and can't breathe, I'm tired all the time, and I KNOW this is in direct correlation with my stress level. Do yourself a favor and get this under control now, while you still have a level of sanity lol. I'm very close to losing my mind. I'm being honest because I don't want to be a hippocrate. My anxiety is very high but I recognize that unless I treat it, I will get FAR worse still.

<<My vision is always shaky. Things seem to be moving.>>

You are describing symptoms that ONLY migraineours and MdDS sufferers talk about!! Try this...does this get better when you drive?? Does the shaky/jumpy vision stop when you move or drive, but when you come to a complete stop, it comes back?? MANY of us have that, so feel comfortable knowing you are not the only one with this one!!

<<When I lay down it feels like someone is moving the bed.>>

Ah, bed spins!! I have heard other migraineours speak of this, but nobody from this forum. A lady from another board spoke of this symptom with her migraine.

<<I'm 40 years old. I used to excercise, but don't anymore. When I feel better I do get on the treadmill. I can't even walk around the block because of the dizziness.>>

I think this can safely account for your weakness. When you stop moving, your body QUICKLY atrophies. I was in bed for the first 2 weeks of my condition, and when I started walking around again, my legs would buckle when I would walk up the stairs, and I SWORE I thought I had MS at that point. My heart would race doing the smallest activities. All of that got a little better as I got a little more active. I now get out of the house for short distances and I do walk around the house and walk outside although it's a far cry from what I used to do. So I still get fatigued. But remember, your body is used to doing FAR MORE, so now that it isn't getting the exercise, it's responding by getting lazy, and you are feeling the results. But you intepret that as you are losing function, or getting a neurological condition. At least that's EXACTLY how I feel, (or felt), and realize that this is not the case 99.9% of the time with these balance problems that accompany normal MRI's/CT scans and normal neurological exams.

<<What is your situation? What was your onset like? And age?>>

My onset was EXTREMELY sudden. It came on, all at once on January 24th 2008. I woke up extremely sensitive to light, the world was shifting and moving, I felt a little drunk walking around, my eyes couldn't focus, i felt nauseated, my brain couldn't process the outside world (they call that visual vertigo), and i became intolerant to all visual motion and environments. This happened, virtually all overnight. I was under a lot of stress in the 2 months prior, and I think that it all just came to a head, and when it all finally resolved, this was when it hit me. this is sometimes refered to as the migraine "crash", as the migraine hits you once the stress starts to diminish. From that day forth, I have never been the same. Oh, I am also intolerant to head motions and any head/eye motions make me dizzier as well. It's been HELL on earth since this started, and the stress of it all has literally torn my family apart. Im 32 years old, and have 21 month old twins and a wife. It sucks!!!

BUT, I have sought out EVERY test known to man lol, and they have all been normal so far. I have seen various neuro-otologists, neurologists, GP's, opthalmalogists (you would be surprised how much neurology can be picked up from eye exams!!), cardiologists, and various other specialists. I have had MRI's, CT scans, EEG's, ENG, EEG, VEMP, MRA's, exams, visual acuity tests, and the list goes on and on. Only the EEG showed some slight abnormality, which may show that there IS indeed a migraine going on. It wasn't specific to seizure. Nothing else shows up. So, I am on Topamax, a migraine preventative, which has stablized me so that I no longer have SUICIDAL days, then Crappy days on and off. I hated the inconsistency. now I only have HELL ON EARTH days consistently, which tells me I'm at least stablizing to SOME degree. My symptoms don't fluctuate at all anymore. I'm stuck where I am. I used to have breakthrough days of feeling near normal. I don't have those any more, but then again, I'd also have days where I felt like I would literally die. Now I am stable at CRAPPY all the time. That's something I guess lol. My next step is Effexor, which may take me to a new level. we shall see.

Have you been examined by a neuro-otologist in this entire 2 1/2 year time or just recently?? It sounds like from your posting that you have only RECENTLY persued testing and other things but please correct me if I am wrong.

Rich

 
Old 07-31-2008, 04:53 PM   #8
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Re: Is it still MAV or something else??

Rich,

At Thanksgiving I thought it was like anxiety. I sat down and just felt off balance. I felt kinda light headed. I got through the day and the next morning I got up and went upstairs to talk to my kids. I got really hot and like I was going to puke. I got light headed and went back to bed. The light headed dizzy feeling did not go away. I felt like I could pass out. My husband travels and my parents had to come stay. I pushed though the next month thinking that it was anxiety. (my dr. said it was). Then I felt better in Jan other then the sudden falling side to side feeling. When I went to the bus stop I just felt sick and kinda week. I turned around and the world "dropped". A neighbor brought me home and I called the dr. (husband gone again) They said it was anxiety. When my husband came home we found a new PCP. He sent me for a MRI. It was ok and then he sent me to a neuro. That neuro said it was inner ear and sent me to a neuro otogist. After a bunch of test he said MAV. I did have decreased function in both ears. I THINK that the anxiety comes after the dizziness, but I hardly trust myself so I'm not sure.
THe muscle twitching is usually in my calves, but it can be anywhere. I'm not taking anything that would cause this, but I could have low vit D again.
The weakness is not all the time, but fairly recent. My legs do shake, but more often they do not. I do get tingling in my hands and feet sometimes. I get scared about feeling weak, but I know I'm not excercising and I'm not eating right because its too hard to make decent food.
I was ok with the MAV dx until this March when I stopped having "good" days. I felt more weak then I had and just tired of the whole thing. Thats when I went to neuro that talked about spino cerabeller atrohy. I was so scared I saw my neuro otogist who refered me to another dr to get that off the table. He ordered a spinal MRI. It was fine. He thought a spinal tap was in order. He thought it was more then migraine, but the only abnormal thing other then gait disturbance, was the spasticity. Not sure why this would be other then the excercise issue. I was suppost to see him next week, they called today to reschedule to OCT. While all this was going on I went to another neuro. He thought it was migraine, because all 3 MRIs have been normal. Also 3 weeks ago I woke up with the room spinning like a ferris wheel. I was SO SICK. I had never had anything like that before. We went to the ER. They gave me a bunch of stuff there and got it stopped. I did spend 3 days in bed after that. I get up in the mornings get ready for the day and spend the majority of it laying down. I get up for about 5min at a time to do stuf here and there. I like to ride in the car. It helps. I have 4 kids 18,16,9,6. I hate the kind of mother I have become. My husband is great for about a day and then the stress gets him. I know for me that anxiety plays some kinda roll. I just can't figure it all out and am becoming more confused then clear.
I can not imagine being in your shoes with little, little ones. I know how it makes every relationship you have in your life hard. I still have days when its so bad I don't think I can go on. On those days "this is temporary".
Sorry to go on and on. But ask away...any insite is appreciated.

CK

 
Old 07-31-2008, 06:28 PM   #9
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Re: Is it still MAV or something else??

You have migraine as far as I can see. Spinocerebellar atrophy is a genetic disorder from the reading I have done for you, and if you had it, you would know it because your parents would have had it, or your grandparents and you would have known it. They would have been in a wheelchair either early in life, or later in life and the diangosis would have come sooner or later. The disease is also passed on to your children and out of the 4 children you have, SOME of them would have come down with the condition, and not one of them has it. That neuro was barking up the wrong tree I think. I still think you SHOULD get checked out by another neuro, but let me see if I get this straight......

the neuro suspected spinocerebellar atrophy, so he ordered a spinal MRI and it was normal. So basically that diagnosis should have gone out the door yes?? Yes, the spasicity CAN be a factor in cerebellar syndromes but I think it is more likely that you just haven't been that active. Can the neuro do an EMG? That tests the nerves to make sure they are working well.

According to my research, the rate that people with cerebellar degeneration problems start to lose function varies with each case but once symptoms of ataxia and spasicity become apparent, shrinkage of the cerebellum on MRI is usually evident. I don't think a lumbar puncture is a dumb idea at this point, and it may serve to ease your mind, but ALL of these symptoms sound more like migraine than anything else.

Do you have a family history of any neurological problems??

Rich

 
Old 07-31-2008, 08:00 PM   #10
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Re: Is it still MAV or something else??

The neuro who suggested the cerebellar degeneration did nothing but scare me. He did say that you can not see it on MRI. He also said it was rare, but some people do just get it. After him I went to a new neuro who ordered the spinal MRI. I told him about what the first neuro had said. He said "HMMM". Then I went to another neuro who a friend had told me was suppost to be good at a different hospital. He looked at all my stuff and said migraine and inner ear, but he was also the on who gave me the patch along with valium. The valium because I had gotten it in the hospital when I had true vertigo several weeks before. He did say at my next appt we would talk about the topamax. Meanwhile the first dr felt things needed to be explored further. This because of the amount of time this has go on and the other the possible spactisity.(I don't know how to spell anymore). He suggested a spinal tap which was to be disscussed with me and my husband at my Aug visit, that he just reschuled to Oct. No one in my family has anything weird at all. Not even migraine.
You are really knowledgable on all this stuff. I have always know that
anxiety has always played a part for me. Its just gotten so hard to tell what is what. That is why I was asking about the MARD. Do you still think its migraine related? Would you be at piece with that dx? It did help me to know that there was a "migraine syndrome" I had never heard that before. Again thanks for all your help. Are your symptoms 24/7?

CK

 
Old 07-31-2008, 08:24 PM   #11
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Re: Is it still MAV or something else??

I think the spasicity is what is throwing these guys for a loop. If it weren't for that, they would tell you they don't know what's wrong with you, and would send you out the door. What muscles are spastic?? The lumbar puncture might be a good idea. I'm considering one myself. Not the most pleasant thing, but not the end of the world either.

And cerebellar degeneration CAN be seen on MRI, so I don't know what the heck this guy is talking about. It is seen as a "shrinking" of the cerebellum later in the disease process, however, this is not always the case, which may be what he is talking about, but there are definitely tell-tale signs, and you are not really displaying any "oh my god, you have cerebellar degeneration" symptoms. you are not slurring your speach, you can still do fine motor tasks like writing and tieing your shoes, typing on a computer, etc. AND, the fact that you have displayed these INTENSE symptoms from day one, with no major worsening in 3 years, doesn't really play into the course of a cerebellar degeneration syndrome. Those typically come on slow, and take years to finally put you in a wheelchair, unless it's a hereditary form, which you DON'T have. I don't think you have it, but if you want to rule it out, REALLY rule it out for your own piece of mind, you need a neuro who deals with that sort of thing all the time. You need an expert. I've read case study after case study. It doesn't fit. I'm not saying you shouldn't get checked out. That would be irresponsible. But a lot of conditions are associated with imbalance. That doesn't mean your cerebellum is shrinking for god's sake! With the amount of symptoms that you have been experiencing since day one, and the speed at which it came on, if you DID have cerebellum degeneration syndrome, you would probably be disabled by now. I can't imagine someone being hit as hard as you got hit, and then have no major worsening of symptoms in 3 years. That fits the profile of migraine, not CD syndrome. See what the neuro says but geez, october?? Couldn't they push it up any sooner?? Perhaps a different neuro??

Is the spasicity limiting your movements?? can you feel it??

Rich

 
Old 07-31-2008, 08:35 PM   #12
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Re: Is it still MAV or something else??

I cracked up when I read your post. Can't say why but I did. See how freaked out I can get myself. No I can't feel any spasticity. They found it by hitting my knees and feet with that thingy. Also, when I was in the hospital a few days before I did have low potassium. Don't know what all that can do to ya, but hey could be. My brother in law had a spinal tap(for dizziness) he said it was the worst experiance of his life. Hes had some bad experiences. They finally found tumer in his spine. Therefore, I'm a little nervous about that. Terrified really. I noticed you went to Dr Hain. I have very seriously consitered going to see him. What did you think of him? I do have to say I feel better about the migraine dx than I have in a long time, thanks to you.
CK

 
Old 07-31-2008, 09:15 PM   #13
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Re: Is it still MAV or something else??

Your potassium was low just a few days before the exam lol???? My God well that could explain a lot!! If I were you, I would pay extra attention to my diet lately, make sure you are getting a wide variety of foods, and drink bottled water with added electrolytes. Also take a multivitamin (check with your doctor). This will make sure that you have all the nutrients you need. The low potassium and electrolytes in general will cause spastic muscles lol. I think you were taken for a loop because of all this! Again, I'd still persue it, because we are dealing with neurological symptoms (even though it is most likely just migraine) but I think a LOT can be explained. You don't have a hereditary cause as you would know family members who have been struck down by this sort of thing. And cerebellum degenerative conditions are EXTREMELY EXTREMELY rare. The more I hear of your history, the less likely it seems possible, based on everything I know regarding cerebellum pathologies, and everything I DO know about migraine. Feel free to research it yourself but I have read case studies of cerebellum degenerative conditions and the presentations are quite different. You would be a very very very very rare case lol. Welcome to migraine :-)

Rich

 
Old 08-01-2008, 08:47 AM   #14
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Re: Is it still MAV or something else??

Thanks for all the info. I know I eat terrible when I am in the throws or this thing. It just takes so much effort to make decent food. I have to agree with the vitamins as I was planning on doing this. When I wake up on days like today and I feel so dizzy and shaky and just weak, thats when I get scared its so much more. I hate this. I have research the brain degeneration. I was so caught up in it I didn't know if it applied or not. Thanks for being the second eyes. All your info is really, really helping me.
Hope you have a great day!

CK

 
Old 08-01-2008, 09:49 AM   #15
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Re: Is it still MAV or something else??

no problem. By all means, follow up with the neuro and do the tests, but for the most part, I'd let the brain degeneration thing go. It doesn't make a BIT of sense

Rich

 
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