Aa
Have these kind of 'balance' problems happened to anyone?
One more question....I have had intermitent severe balance problems....most are just losing my balance so I have to catch myself or feel wobbly or unsteady....but I have had a few severe weird episodes...where it feels like I am falling off a step or being thrown sideways...no warning just a horrible feeling that literally makes me scream and grab on to the nearest object...it scares me to death. It happens so fast and is over in a split second. I don't feel dizzy or have any warning. I am getting to the point I am afraid to go out because I don't know what strange thing is going to happen to me! Thanks again for any feedback!
Laurie :)
Laurie :)
I will! And you please keep me updated on how it is going with you! :)
Talk to you soon!
Laurie :) oxoxoo
Talk to you soon!
Laurie :) oxoxoo
Wow is right! Not that any of us want to have these problems, but if we do have them, we want to be taken seriously and at least be on the road to finding answers, whatever those answers may be. So in that regard, great news!
I'm glad you found the site and I'm glad the friend request went through :) I feel as though we are kindred spirits. Please keep me/us updated and I will do the same.
Hugs and kisses rightbackatcha!
Minnie
I'm glad you found the site and I'm glad the friend request went through :) I feel as though we are kindred spirits. Please keep me/us updated and I will do the same.
Hugs and kisses rightbackatcha!
Minnie
It worked! we are friends! :) Guess what!? I called the Opthamologist at 9:15am...they told me to come right in...she examined me and said I had a 6th nerve palsy in my right eye....she called my neurologist (who she personally knew) while I was sitting there. He (neurologist) told her he thought I had MS...she told him what she found...he now wants me to have a LP and another brain MRI with and without contract using MS protocol. Wow!! I got more answers in ONE hour than I have in over the last several months!! :) Thank you for your advice!!! I am sooooooooooo glad I found this sight too!! Everyone has been so helpful!!
Hugs AND kisses!!
Laurie :)
Hugs AND kisses!!
Laurie :)
Wow, this is so surreal. Are you a Pisces, lol??! If I can do it right, I will send you a friend request through the site. I am so glad I began posting here. The folks are so nice and helpful, and regardless of what I've got, it helps to know there is someone out there who understands!
Hugs,
Minnie :)
Hugs,
Minnie :)
Ok....now I KNOW we are related!! You sound so much like me it is scarey!! I never wore glasses either! (just reading glasses now) I love the sun...and I pull weeds for therapy! I also disregard "symptoms" until they "STOP" me...I just don't have the time or patience do deal with it....you know, much more better things to do...PLUS..you know, I am SuperWoman, SuperGrandma, SuperMother-in-law, SuperMom....I could go on....I/
Marlye, I believe my first neurologist was the one you saw (sure sounds like him). He wouldn't look at my symptom list either. Told me right away he didn't think I have MS. I only went to him because I was referred. He said I don't get enough sleep, told me to take a muscle relaxer before bedtime, and that I have carpal tunnel.
Guess who doesn't have carpal tunnel? Not that I want anything worse by any means, but I went ahead and scheduled an EMG with him (while I was trying to line up Neuro Two). Figured I would get the test out of the way. If I had it then I could deal with that and if not, it would be something to rule out. Well, no carpal tunnel. He was very surprised and started treating me nicer. Too little too late. I wasn't making it up, and it took me a long time to even get up the nerve to bring up my new symptoms to anyone.
Just wanted you, and anyone else reading, to know that you aren't alone (sadly).
Take care and have a good week,
Hugs,
Minnie :)
Guess who doesn't have carpal tunnel? Not that I want anything worse by any means, but I went ahead and scheduled an EMG with him (while I was trying to line up Neuro Two). Figured I would get the test out of the way. If I had it then I could deal with that and if not, it would be something to rule out. Well, no carpal tunnel. He was very surprised and started treating me nicer. Too little too late. I wasn't making it up, and it took me a long time to even get up the nerve to bring up my new symptoms to anyone.
Just wanted you, and anyone else reading, to know that you aren't alone (sadly).
Take care and have a good week,
Hugs,
Minnie :)
I used to be a sun worshipper. I could hardly wait to get outside into the sunshine. I also enjoyed working in the flower beds (believe it or not, pulling weeds can be therapeutic ;)). We had a very early summer, as did the whole country, and I noticed I couldn't be outside very long at all.
I think I actually had my first incident of that at my daughter's house last year when I helped her with her yard sale and a couple of times at MIL's house when we were outside on their deck.
I began having strange symptoms here and there but just blew them off. They began to converge in late spring and some days it is all I can do to make it through work.
I tend to use the Ostrich Method... Bury my head in the sand and hope it goes away. Not very smart, yet I didn't want to make much ado about nothing. I now have a feeling it isn't nothing. It's just a matter of finding out what is is!
I hope you have a great week,
Hugs,
Minnie :)
I think I actually had my first incident of that at my daughter's house last year when I helped her with her yard sale and a couple of times at MIL's house when we were outside on their deck.
I began having strange symptoms here and there but just blew them off. They began to converge in late spring and some days it is all I can do to make it through work.
I tend to use the Ostrich Method... Bury my head in the sand and hope it goes away. Not very smart, yet I didn't want to make much ado about nothing. I now have a feeling it isn't nothing. It's just a matter of finding out what is is!
I hope you have a great week,
Hugs,
Minnie :)
Hmmm....it was this summer too...I took a turn for the worse...does the heat bother you? I was walking on the beach almost every other day...now I can hardly do anything without feeling weak and tired ect....I will let you know what I find out....please keep me/us posted at what you find out! I am not scheduled for a LP. I had an EMG last week and will have a SSEP this week. I am going to call the Eye doc tomorrow to get an appointment.
hugs back to you too!!
Laurie :)
hugs back to you too!!
Laurie :)
Yes, they are pressing on my spinal cord, and I have been told that I was too young to have it this bad. It's a real cluster-thingy back there ;-) Up until a few months ago I was managing my symptoms through pain management including exercise, PT, and trigger point shots. Then my symptoms changed. I just started the diagnostic process this summer.
As of yet, they haven't pushed surgery. Like you, I believe they are waiting to see what all this testing reveals. Looks like I'm up for a lumbar puncture next :( A few years ago I was quite athletic and active... Made it to brown belt in Wado Karate. I still try to exercise but my body doesn't want me to. It isn't my cardio, my body gets weak. I take vitamins, eat fairly well, take supplements and get B12 shots. Some days are better than others.
I am just going to keep doing the best I can. I figure one way or another eventually it'll get sorted out. Hopefully ;-)
Hugs and take care,
Minnie :)
As of yet, they haven't pushed surgery. Like you, I believe they are waiting to see what all this testing reveals. Looks like I'm up for a lumbar puncture next :( A few years ago I was quite athletic and active... Made it to brown belt in Wado Karate. I still try to exercise but my body doesn't want me to. It isn't my cardio, my body gets weak. I take vitamins, eat fairly well, take supplements and get B12 shots. Some days are better than others.
I am just going to keep doing the best I can. I figure one way or another eventually it'll get sorted out. Hopefully ;-)
Hugs and take care,
Minnie :)
We MUST be related!! lol You have cervical spondylosis too?! You are so young! They said I was too young to have it this bad.. Is your spurs/disc pressing on your spinal cord too? Are they going to do OR want to do surgery?
Do you officially have MS? Sorry for all the questions...The docs are still testing me....they don't think my balance stuff is ALL related to may neck. And now this eye thing...weird...oh well...it is nice to have someone who is related to me ;)...or at least, can relate :)
Laurie :)
Do you officially have MS? Sorry for all the questions...The docs are still testing me....they don't think my balance stuff is ALL related to may neck. And now this eye thing...weird...oh well...it is nice to have someone who is related to me ;)...or at least, can relate :)
Laurie :)
I hate Doctors! I can't believe the neuro wouldn't even look at your symptom list!!!!! Did you Pay for your visit?? I thought when you PAY for something... you get something in return?! I hope whatever is going on they will find it! I have had friends who said...."pray they find nothing..why would you want to have something wrong with you" My response is....when you feel like crap and your body isn't working...they BETTER find something wrong..and I want to KNOW what it is!!!!! Don't give up on trying to find the right neuro...unfortuately there are way TOO MANY bad ones out there....you KNOW your body! I wish you all the best. Please keep me posted on how you are doing and what they are going to do next!
Laurie :)
Laurie :)
Oh wow, I have cervical spondylosis and the neck issues you have. Lol, are we related? We're even having the same type of balance and vision issues.
Just wanted to say I relate :) Hopefully we can both get some answers soon.
Hugs,
Minnie
Just wanted to say I relate :) Hopefully we can both get some answers soon.
Hugs,
Minnie
I hate carnival rides, LOL, never could ride any of them. Tried and always ended up throwing up. I could manage the Merry-go-round up until a few years ago, had to even stop that.
The neuro I went to see even refused to look at my symptom list. That's when I knew I had a problem and he wasn't going to be any help.
Going to be calling my GP tomorrow, got new symptoms showing up. Of course I have been online checking them out. Apparently the tremors I have more resemble dystonia most of the time, and are getting painful. Just about had my boyfriend call the ambulance last night cause it affected my chest and breathing. But went away, just leaving me with a cough and a slightly sore throat.
I do have fibromyalgia, was diagnosed with that about 15 years ago. But what is going on now is mostly all new. I do know fibro can make things worse. Going to see if my GP can send me to someone about my fibro to see if it may be contributing to all this.
The neuro I went to see even refused to look at my symptom list. That's when I knew I had a problem and he wasn't going to be any help.
Going to be calling my GP tomorrow, got new symptoms showing up. Of course I have been online checking them out. Apparently the tremors I have more resemble dystonia most of the time, and are getting painful. Just about had my boyfriend call the ambulance last night cause it affected my chest and breathing. But went away, just leaving me with a cough and a slightly sore throat.
I do have fibromyalgia, was diagnosed with that about 15 years ago. But what is going on now is mostly all new. I do know fibro can make things worse. Going to see if my GP can send me to someone about my fibro to see if it may be contributing to all this.
I am glad you are going to see a new neuro! I had severe symptoms 20 years ago....after all the tests they ruled out MS and said I had Fibromyalgia and Neurocardiogenic Syncope...then after a couple of years of ups and downs......I seemed to get better ..almost....Well, now at 53 it is all back...only with just some of the old problems and a LOT a new neuro symptoms....My MRI showed increased signals on my brain stem which my Neuro and Spine Dr saw (MRI report didn't mention it)....Spine Dr thinks I have MS. My neuro won't say for sure until he finishes testing...My Orthopedic Surgeon wants to do surgery on my neck but is waiting to be cleared by the Neuro Dr. At least this time they aren't treating me like I am just "stressed" or have "anxiety" like they did 20 yrs ago. I thought I was too old for MS too...until I started reading the posts on here...so many have been diagnosed in their 50's! I find my self always saying WHOA! loudly when I feel like I am going to topple over or run into the wall! Feels like I am on a carnival ride sometimes....Whoopy free entertainment! Let me/us know when you see the new Neuro! Hope this one is a good one!! When I had my nerve conduction test the other day...the neuro-tec told me they call my neuro "House" because he figures out tough cases! (House is the Doctor show staring Hugh Laurie) I was happy to hear that!! I am one of those weird and unusual ones!! I remember...back 20yrs ago...when I saw one of the many neurologists..I was telling him my symtoms....he responded back to me..."you have too many symptoms"....I got mad and answered him back.."which ones would you like me to not mention?" True story!
Prayers, Laurie :)
Prayers, Laurie :)
My orthopedic doctor sent me to the neurologist I saw , he felt I had some neurological problems plus the MRI showed lesions. Personally I think the neuro was an idiot (sorry) that just didn't care. He didn't think I had MS because of my age (57). Said I should have shown symptoms by now. After going through the symptoms people with MS have I know that I have had some of them for years, I just chalked it up to stress, anxiety and fibromyalgia. My family doctor is trying to get me into see another neuro since he still thinks I may have MS.
I have a lot of back issues, too many to list, and have had surgery for a compression fracture back in 2000. But all these other symptoms have just been getting worse, especially over the last few months.
I have not had a spinal tap done or any nerve conduction tests.
I know what you mean about fighting to keep your balance, I'm constantly grabbing things to keep from falling. Sometimes all I can do is laugh at myself. My boyfriend finally quit asking me why I was laughing, he didn't think it was funny. Now he just joins in with the laugh.
I have a lot of back issues, too many to list, and have had surgery for a compression fracture back in 2000. But all these other symptoms have just been getting worse, especially over the last few months.
I have not had a spinal tap done or any nerve conduction tests.
I know what you mean about fighting to keep your balance, I'm constantly grabbing things to keep from falling. Sometimes all I can do is laugh at myself. My boyfriend finally quit asking me why I was laughing, he didn't think it was funny. Now he just joins in with the laugh.
I am so sorry to hear about all your balance issues! I haven't fallen YET! Why doesn't your neuro think you have MS? I 'feel lightheaded too, but NOT vertigo..I KNOW the difference...that is what scares me so...I don't have any warning...I feel like I have to 'fight' to keep my balance ALL the time. I have not been diagnosed yet either...still in testing..one thing all docs are in agreement with is they believe i have something else BESIDES my spinal cord compression in my neck...because of my intolerance to heat and severe balance issues...please let me know how you are doing and when they find out what is going on...
Have they done a spinal tap or nerve conduction tests ect....yet? I still haven't been scheduled for a spinal tap...but having all the other tests done.
Laurie :)
Have they done a spinal tap or nerve conduction tests ect....yet? I still haven't been scheduled for a spinal tap...but having all the other tests done.
Laurie :)
I am not diagnosed yet with anything for certain. My balance problems, shaking and weakness in my left side is what led my orthopedic doctor to send me for MRI of my brain. Within the last 2 weeks balance has gotten so bad I have ended up in ER because I fell 3 times in one day and just could not stand up at all. My family doc prescribed a walker for me since I have so much trouble. He still thinks I have MS but neuro didn't. He said I have something terribly wrong.
The ER diagnosed me with vertigo, but I have no spinning. I don't really feel dizzy, but I do feel lightheaded. I just veer to the left all the time, run into things and fall down. My boyfriend is always asking me where I am going. LOL. I have so many bruises on me from running into things. I have also quit driving due to all these balance issues plus the tremors that just started a little over a week ago.
The ER diagnosed me with vertigo, but I have no spinning. I don't really feel dizzy, but I do feel lightheaded. I just veer to the left all the time, run into things and fall down. My boyfriend is always asking me where I am going. LOL. I have so many bruises on me from running into things. I have also quit driving due to all these balance issues plus the tremors that just started a little over a week ago.
Just got home from seeing my new grandson.finally..and having the EMG and NC tests this morning...I asked the doctor about my brain MRI and told him about the severe balance attacks....he said he will let me know all of the results after my test on Oct 11th. Problem is they can't get me in to review all the results until Oct 22nd since I am going out of town on Oct 13-20. Oh well... :( I just have to be patient I guess...Oct 11th is when I hav!e the SSEP test. I just wish I didn't feel so tired and weak! I am looking forward to my trip starting the 13. My youngest son (31 yrs) is taking ME for HIS birthday driving through the Blue Ridge Mountains to see the beautiful fall trees. Don't get fall or winter here in south Florida! He lives in Georgia. I don't know how familiar you are with the United States...but the Blue Ridge Mountains are just beautiful in the fall.. I am so looking forward to getting away and escaping my reality...even though I have to take my body along....I don't know if I mentioned but I lost my job on Sept 4th...so I have no money coming in and a lot going out!! I am in the process of filing for disability. My docs think I should...
thanks again for
caring and support!
Laurie :)
thanks again for
caring and support!
Laurie :)
Good morning! I mean...good evening to you! So good to hear from you!!
So I've got you thinking huh?? Join the crowd! LOL! I have been known to deflate a Doctors Ego in less than an hour!! ;)
I have not yet fallen to the ground from one of these balance attacks....I was lucky enough to be near a wall...car..chair..ect to catch my self...Thank God because falling could literally paralyze me due to I have 2 bone spurs pressing onto my spinal cord! That is why I am so afraid to go anywhere...if I fall...it could literally paralyze me!!
I don't know if you read my other post mentioning what I DO have...Cervical Spondylosis, Cervical Stenosis with Spinal cord compression at C4-5 and C5-6. They want to do surgery, but because of my "symptoms" and the 2 Brain MRI's I had showed increased signals on my brain stem which my neurologist wasn't sure what it was...sent them to be read by a neuroradiologist...I go for an EMG test this morning....I hope my neuro will let me know about my MRI. And I do have one small white spot on my cerebellum.
I hope to get 'some' answers today....I will let you know when I get back..have to get ready...
So great to talk with you!!
Lots of love....Laurie :)
So I've got you thinking huh?? Join the crowd! LOL! I have been known to deflate a Doctors Ego in less than an hour!! ;)
I have not yet fallen to the ground from one of these balance attacks....I was lucky enough to be near a wall...car..chair..ect to catch my self...Thank God because falling could literally paralyze me due to I have 2 bone spurs pressing onto my spinal cord! That is why I am so afraid to go anywhere...if I fall...it could literally paralyze me!!
I don't know if you read my other post mentioning what I DO have...Cervical Spondylosis, Cervical Stenosis with Spinal cord compression at C4-5 and C5-6. They want to do surgery, but because of my "symptoms" and the 2 Brain MRI's I had showed increased signals on my brain stem which my neurologist wasn't sure what it was...sent them to be read by a neuroradiologist...I go for an EMG test this morning....I hope my neuro will let me know about my MRI. And I do have one small white spot on my cerebellum.
I hope to get 'some' answers today....I will let you know when I get back..have to get ready...
So great to talk with you!!
Lots of love....Laurie :)
COMMUNITY LEADER
hmmmm got to watch those showers, have to admit to not understanding your "ready to fall" comment, are you meaning you dont actually fall or start going down but you do become unstable or wobbly? Personally, if i'm in motion i'll fall forward but if i'm standing when i close them, i go over backwards and i dont usually become 'aware' that i am falling, until its way too late to stop it because i'm already past the point of no return.
One of my tremors is kinesthetic, its a 24/7 low grade hrts or constant rythmic rippling but the longer my body is unsupported and moving around, the more pronounced the tremor becomes. I often dont notice its becoming bigger and so noticable unless i'm reaching for something, or people are staring (lol) thats probably because i'm more focused on trying to walk normally and staying on my feet. lol shopping is so not what it use to be! I have tried to push through but it just gets bigger and everything else is going south so its just not worth the fall out.
Never had a 'sweating attach' though, can't actually recall others in our community mentioning it either, so thats got me really wondering. Totally not sure whats going on there, or why it lasted for days if it was connected to over doing it on your 2 mile walk. What typically happens in MS, is that once you've rested and cooled down, you revert back to your baseline (normal) its called a psuedo relapse. So not real or a true relapse and usually only lasting a short time afterwards, usually talking about hours rather than days.
In my mind, experiencing 'sweating attacks' for 3 days, is not typically what happens to pwMS who over do it and it sounds more like the entire episode could of been caused by something like an infection eg UTI, overall it just makes more sense to me. lol you've sure got me thinking!
Cheers.........JJ
PS please let us know how you go today.
One of my tremors is kinesthetic, its a 24/7 low grade hrts or constant rythmic rippling but the longer my body is unsupported and moving around, the more pronounced the tremor becomes. I often dont notice its becoming bigger and so noticable unless i'm reaching for something, or people are staring (lol) thats probably because i'm more focused on trying to walk normally and staying on my feet. lol shopping is so not what it use to be! I have tried to push through but it just gets bigger and everything else is going south so its just not worth the fall out.
Never had a 'sweating attach' though, can't actually recall others in our community mentioning it either, so thats got me really wondering. Totally not sure whats going on there, or why it lasted for days if it was connected to over doing it on your 2 mile walk. What typically happens in MS, is that once you've rested and cooled down, you revert back to your baseline (normal) its called a psuedo relapse. So not real or a true relapse and usually only lasting a short time afterwards, usually talking about hours rather than days.
In my mind, experiencing 'sweating attacks' for 3 days, is not typically what happens to pwMS who over do it and it sounds more like the entire episode could of been caused by something like an infection eg UTI, overall it just makes more sense to me. lol you've sure got me thinking!
Cheers.........JJ
PS please let us know how you go today.
Hi Laurie,
You are very lucky to have such a caring grandson!
I have had MS for about 30 years but only got the dx about 4 years ago. My left leg is my biggest problem. It is very weak and stiff due to extreme spasticity. This is probably why I have the balance and mobility problems. I need a cane or rolling walker to (very slowly) walk. It totally frustrates me. I am blessed that other than fatigue these are my only MS symptoms.
Are you on a DMD?
I truly wish you well :)
Deb
I truly wish you well
You are very lucky to have such a caring grandson!
I have had MS for about 30 years but only got the dx about 4 years ago. My left leg is my biggest problem. It is very weak and stiff due to extreme spasticity. This is probably why I have the balance and mobility problems. I need a cane or rolling walker to (very slowly) walk. It totally frustrates me. I am blessed that other than fatigue these are my only MS symptoms.
Are you on a DMD?
I truly wish you well :)
Deb
I truly wish you well
Hi Deb,
thanks for your response....I am sorry to hear you have the same balance problems...This balance stuff and weakness too....is what really gets to me! I never know when I am going to "loose" it because it just happens! I thought I was going crazy! I am glad I am not the only one that this happens to. The same day I had the worst loss-of-balance- attack ...I was standing in the kitchen eating a slice of pizza along with my 9 year old grandson. The next thing I knew My slice of pizza that "was" in my hand was now 4 feet away and splatted on the floor! I didn't feel my hand jerk or anything....it just happened. My grandson reached down to pick up my smooshed piece of pizza...looked at me with sad eyes and asked me if I still wanted to eat it! I hate that my family has to see me like this!
How long have you had MS? Have you had any other symptoms?
Laurie :)
thanks for your response....I am sorry to hear you have the same balance problems...This balance stuff and weakness too....is what really gets to me! I never know when I am going to "loose" it because it just happens! I thought I was going crazy! I am glad I am not the only one that this happens to. The same day I had the worst loss-of-balance- attack ...I was standing in the kitchen eating a slice of pizza along with my 9 year old grandson. The next thing I knew My slice of pizza that "was" in my hand was now 4 feet away and splatted on the floor! I didn't feel my hand jerk or anything....it just happened. My grandson reached down to pick up my smooshed piece of pizza...looked at me with sad eyes and asked me if I still wanted to eat it! I hate that my family has to see me like this!
How long have you had MS? Have you had any other symptoms?
Laurie :)
i have exactly the same balance issues that you have. I work on my balance each week at PT. I am progressing with balance but I still have an awful time on uneven surfaces and in the dark. I tried walking on the beach this summer and had trouble walking on the sand even while holding my hubby's hand. I am unable to walk heel to toe unless I hold on to something I do not have vertigo or dizziness, just debilitating balance problems.
I hope you can work things out!
Hang in there,
Deb
I hope you can work things out!
Hang in there,
Deb
So good to talk with you!! Guess you are now sound asleep! On this side of the world (South Florida) it is 12:30PM not AM! :)
I can't walk in the dark either! and if I close my eyes..like you say instinctively especially in the shower.....WHOA! I am ready to fall!
I WAS walking 2 miles every other day on the beach, ect...but now I can't go out in the heat...makes me weak and shaky :( I I get these HORRIBLE sweating attacks for days afterward....I will feel real hot then break out in profuse sweating everywhere and then feel weak and shaky....weird, I know! Anyway thanks again for all your 'stories'....it helps out a lot!! :)
Laurie :)
I can't walk in the dark either! and if I close my eyes..like you say instinctively especially in the shower.....WHOA! I am ready to fall!
I WAS walking 2 miles every other day on the beach, ect...but now I can't go out in the heat...makes me weak and shaky :( I I get these HORRIBLE sweating attacks for days afterward....I will feel real hot then break out in profuse sweating everywhere and then feel weak and shaky....weird, I know! Anyway thanks again for all your 'stories'....it helps out a lot!! :)
Laurie :)
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
