Aa
What on earth is wrong with me?
Hi. Just found this forum. I am 30 yr old female with 3 kids. I have been having some issues for the last few years that are getting worse. Restless leg syndrome I have had since mid teens, frequent headaches, weird twitching in my muscles mostly at night. I cant stand to take baths anymore or get hot or humid..it makes me "irk". I can't even fold laundry when it is warm anymore because it makes the ends of my fingers feel like they are creepy crawly or something. I have this weird vibrate inside me and at first when it happened I thought the whole bed was vibrating and I yelled because I thought it was ghosts or demons *blush* and my husband came running and said he could not feel a thing. I since realized it is coming from inside myself...it happens when I am trying to sleep or it wakes me up in the night. That use to happen only occasionally but now I notice this happens at least a few times a week now. My hands tingle constantly now, as if I had been holding onto a jackhammer all day or something and my feet feel the same way, and sometimes they have a burning sensation on the bottom that comes and go. Lately my right hand seems a little stupider/slower than it use to be in playing the piano and typing. Messing up on words and notes that it knows very well and should not be messing up on. I don't know if that makes any sense. And the other day I was sitting down and my right eyeball jerked up and to the right by itself repeatedly for a few seconds. I have never had that happen ever before and it stopped and has not happened since then. It was very strange to me. There are times where I have to lay down and have a nap by 10 or 11 am because I am just so tired and that goes on for a month or two and then there are times where I am not feeling so bad. Lately..it seems like I feel mostly bad and don't seem to have many times of feeling mostly well.
So I got sent to see a neurologist. I have only seen him once so far and was not impressed. He thinks maybe I have migranes even though I told him I only have those on occasion and I know the difference between a migraine and a regular headache. He put me on Topamax...and I must admit it has made me feel some better and I sleep a lot better. But the other symptoms have not gone away. I had an MRI with contrast done back in December before I saw the neuro. because of hearing problems I was having (my ENT sent me for it) and it was unremarkable except for something on the left temporal something or other that the radiologist said was likely a venous angioma? Neurologist didn't remark on that finding at all so I am guessing that it is nothing?
I also had an EEG and neurologist didn't say anything about the results on that either.
Actually... when I went to the neuro... he started asking me my symptoms and as I was explaining to him his cell phone rang and he took the phone call. He talked for a good 3 or 4 minutes to someone (a friend of his it sounded like) and then when he got off the phone he sent me in the next room for the EEG. So I didn't even get to finish explaining my symptoms to him. He never laid a hand on me for an exam. And then his nurse took a phone call right in the middle of my EEG and set up an appointment for her son to go to the YMCA while I was suppose to be relaxing with my eyes closed while some flashing lights were going on. I was very unhappy with that and shocked. Ugh... maybe I should just see about a new doctor.
What I am asking is... does this sound like I might possibly have this MS disorder? I have had blood tests of all sorts from all different doctors and nothing is being found. Does the MRI I had mean I do not have MS?
Thanks for anyone who can help me.
Dawn
So I got sent to see a neurologist. I have only seen him once so far and was not impressed. He thinks maybe I have migranes even though I told him I only have those on occasion and I know the difference between a migraine and a regular headache. He put me on Topamax...and I must admit it has made me feel some better and I sleep a lot better. But the other symptoms have not gone away. I had an MRI with contrast done back in December before I saw the neuro. because of hearing problems I was having (my ENT sent me for it) and it was unremarkable except for something on the left temporal something or other that the radiologist said was likely a venous angioma? Neurologist didn't remark on that finding at all so I am guessing that it is nothing?
I also had an EEG and neurologist didn't say anything about the results on that either.
Actually... when I went to the neuro... he started asking me my symptoms and as I was explaining to him his cell phone rang and he took the phone call. He talked for a good 3 or 4 minutes to someone (a friend of his it sounded like) and then when he got off the phone he sent me in the next room for the EEG. So I didn't even get to finish explaining my symptoms to him. He never laid a hand on me for an exam. And then his nurse took a phone call right in the middle of my EEG and set up an appointment for her son to go to the YMCA while I was suppose to be relaxing with my eyes closed while some flashing lights were going on. I was very unhappy with that and shocked. Ugh... maybe I should just see about a new doctor.
What I am asking is... does this sound like I might possibly have this MS disorder? I have had blood tests of all sorts from all different doctors and nothing is being found. Does the MRI I had mean I do not have MS?
Thanks for anyone who can help me.
Dawn
Jazzy..I guess I have to do some more research. I am sure that my heart issues are caused by position... the racing always happens when I bend to pick something up, or when I switch to my side when I am laying down etc. I am guessing they will do a tilt table test to see?
And have you had a lumbar puncture? Anyone know if that tells you accurately if you have MS or not? Can't I just request that test? Sounds simple.. but obviously it doesn't work that way or everyone here would have confirmed dx or know that they don't have it huh? *sigh*
And have you had a lumbar puncture? Anyone know if that tells you accurately if you have MS or not? Can't I just request that test? Sounds simple.. but obviously it doesn't work that way or everyone here would have confirmed dx or know that they don't have it huh? *sigh*
Gosh sorry! I didnt' mean for it to give you more to worry about.
Myself- I have already been found to have the orthostatic hypotension, and I just want to know if my problems are autonomic or MS, or autonomic being caused by MS :-P because the treatments are very different and I want the correct treatment.
Jazz
Myself- I have already been found to have the orthostatic hypotension, and I just want to know if my problems are autonomic or MS, or autonomic being caused by MS :-P because the treatments are very different and I want the correct treatment.
Jazz
Thanks. Well I know I sure hope it's not that dysautonomia. I wish Google had never been invented now lol.
Hello Heather, I have read through the thread and know I will have to read through it again for it to all register (gotta love the brain) but one thing that jumped out at me was you being sent to see the EP.
After nearly 5 years of horrible trouble, in Dec. a doctor took my blood pressure lying down and standing up and found problems. (I always have low heart rate & low blood pressure sitting readings). I am being scheduled to see someone also, that deals with autonomic nervous system problems.
If you read about it - many of the symptoms resemble MS, and I have had 2 other doctors tell me they believe I have MS. (Not my neurologist). I am hoping this gives me some much needed final answers.
If you look up 'dysautonomia' you will find good info on it.
I will have to stop back in later,
Jazzy Fizzle
After nearly 5 years of horrible trouble, in Dec. a doctor took my blood pressure lying down and standing up and found problems. (I always have low heart rate & low blood pressure sitting readings). I am being scheduled to see someone also, that deals with autonomic nervous system problems.
If you read about it - many of the symptoms resemble MS, and I have had 2 other doctors tell me they believe I have MS. (Not my neurologist). I am hoping this gives me some much needed final answers.
If you look up 'dysautonomia' you will find good info on it.
I will have to stop back in later,
Jazzy Fizzle
Bless your heart. Hang in there and let us know if you get any definitive news!
As for the heat, only those who suffer similiarly understand. This past summer, some girlfriends were planning a summer outing and I was going to go. As the day grew nearer, the forecast firmed up into highs in the upper 90s. I said, "girls, I can't go." They said, "Oh, we'll push you around in a wheelchair so you don't have to walk, find you some shade, take cool water along to wet towels and put on you." I said, "no. I can't explain it and it sounds unfathomable, but I CANNOT be out in that heat regardless." They weren't mad, but I could tell they didn't really get it.
Anyway. Hope you find out something on the 15th!
As for the heat, only those who suffer similiarly understand. This past summer, some girlfriends were planning a summer outing and I was going to go. As the day grew nearer, the forecast firmed up into highs in the upper 90s. I said, "girls, I can't go." They said, "Oh, we'll push you around in a wheelchair so you don't have to walk, find you some shade, take cool water along to wet towels and put on you." I said, "no. I can't explain it and it sounds unfathomable, but I CANNOT be out in that heat regardless." They weren't mad, but I could tell they didn't really get it.
Anyway. Hope you find out something on the 15th!
Thanks Ess. I see this electrophysiologist on the 15th, the day after i see the neuro. I hope they can just tell me what the heck is going on.
Hang in there, gal. A huge amount is going on with you and you've been holding up well, so hold up a little longer. At least you're getting good medical attention and I'm hoping you'll get a good diagnosis and treatment soon.
As to aspartame, all these claims are from fanatics. I don't advocate a lot of artificial sweeteners or artifical anything for that matter, but they don't cause MS or any other documented illness.
ess
As to aspartame, all these claims are from fanatics. I don't advocate a lot of artificial sweeteners or artifical anything for that matter, but they don't cause MS or any other documented illness.
ess
Well and I just got another call from my reg. doctor. I had to wear a holter monitor Monday all day and night because of flutters Id been feeling (Ive worn one before 5 years ago and it was normal but Dr wanted me to wear one again) Well...they just called me and said it was abnormal and recorded extra beats and they are sending me to a electro physiologist (sp) that specializes in the electrical aspects of how the heart works...?
gosh.. someone just shoot me.
gosh.. someone just shoot me.
Well.. and the eyeball thing, since it only happened once I don't even know if I should mention it to the Dr. Well, mainly because it's embarrassing (because I was peeing at the time it happened and honestly I'd be embarrassed to mention WHAT I was doing at the time that it happened and I'm sure he will ask) Maybe the eyeball jerking thing was a fluke kind of thing. It was just so strange because I'm sitting there..doing my thing.. and staring at the sink when my right eye jerked up and to the right over and over. My left eye was still looking at the sink..and my right eye was looking at the shower curtain. A very strange thing indeed because I didn't even know eyes could do such a thing. I always thought that if one eye looked at something, the other eye had to look at it too. I never thought you could SEE two different things at the same time.
I have had many of the same symptoms as you all. Neurologists cant find anything wrong on many of the tests, what I have discovered is that Aspartame ie the chemical sweetner as in Candrel etc and in diet drinks, causes many neurological problems, including visual problems too. The best thing to do is to come off all aspartame foods for 2 months and see if symptoms improve.. also check out web site www.dorway.com which will give further information.
Anything is worth a try, plus if you find it is that then you can try with others to spread word and get it banned.
Karen
Anything is worth a try, plus if you find it is that then you can try with others to spread word and get it banned.
Karen
Thanks ya'll. I just knew something wasn't right with the neuro. I felt so intimidated already because I don't like doctors to begin with, Id rather just stay at home thank you much! That makes me mad too, I didn't even think that he might possibly bill my insurance for a full exam. Grrr. I see him for the second time on Valentine Day. I'll see what he has to say and then I will likely start my search for a different doctor. Thank you for making me feel a little more at ease.
Quix.. you know with the hands and feet you know..I have had the tingling for so long it is almost just part of ME. I want to say both hands at the same time. (Feet came later I think but started both feet at same time too I guess..not just one first) I know it is more pronounced and noticeable now. Use to be like a low hum in my teens, like a slight annoyance but not really bothersome. But now it is just there and letting me always be aware of it. Always in both hands (and feet) but if I hold something really warm in one hand..that hand will tingle harder. Or washing the dishes in a little hotter than warm water really gets the hands going. And an especially weird thing...If I clap my hands together you know how you get the higher amount of tingle? It lasts that higher amount for a long time.. it does not go right away..as if it won't forgive me for the clap I put it through (if you understand that way of putting it). As I said..I've had this tingle in hands and feet since mid/late teens but it has only in the last couple years become very noticeable and only in the last year become very bothersome.
*I have recently had some average blood lab work done...Glucose was normal at 94, CBC was normal and I am not anemic, Thyroid was 0.9 and normal and Sedimentation rate was normal* I was just told this today by my family Dr because she was worried about the numbness/tingle I described to her. The neuro also did some bloodwork but I don't know what kind or what the results were yet.
Moving to Texas was the most horrible thing I could have done to myself heat wise. I am so glad there there are others who understand what simple heat can make a person feel like! I have been here for 3 years now. My husband does not really understand how it affects me and it has put a strain on us (I tear up at the mention of this, the heat is a biggie for me because it interferes with my life) and for the longest time I thought that I must be a very big wimp. A nice hot shower or a nice tub soak with a good book(something I like because it is relaxing) starts out fine but ends with me feeling miserable and needing to actually rest from. Our family loves to go camping and fishing and it is hard for me not to complain. I feel like a burden sometimes when we have family time outdoors and I am a healthy weight, not out of shape, we eat very healthy and hardly any processed foods (grow our own organic mostly) and should not be having to rest so much from just a walk outdoors. And a hobby of mine is gardening but it has become so difficult for me with the sudden "fatigue" that sometimes happens, my energy that suddenly disappears. I think the heat is what saps my energy. And what I call "irking" is this weird thing with my hands where I can't handle touching warm clothes from the dryer. Because of the tingling in my hands already and the creepy crawly thing it does to the ends of my fingers it makes me want to constantly flick my fingers against my thumbs as if I could get the tingle to fling off them. It looks completely stupid to be honest and I just keep my hands balled up if they are irking. Ugh...I just hate it. I have to make my oldest daughter fold the laundry that is fresh from the dryer. But I must say I have always had a similar sort of "irk" since I was a kid. I was born premature (I am an identical twin) and my sister had this thing where she took most of the nutrients/food and so she weighed 4 lbs and I only weighed 2 and we were born 6 weeks early. I have always not liked to have my feet rub on carpet or my hands rub on carpet or certain texture cloths etc. It literally hurts me inside (this will probably make no sense..it does not even make sense to me..I just call it my "irk") And it has nothing to do with the tingling I have in my hands and feet now Im sure since I didn't have those until my teens. At least, that is what I am guessing. To this day I can not walk on carpet with bare feet unless I curl up my toes (lol I know...yes I am a 30 yr old adult and it's a bit silly) and I make my kids wear shoes on carpet so I don't have to see them rub their feet on carpet *blush*) That is explaining just so you get my definition of what "irk" is to me. My family knows it well :)
Anyways...the fatigue. I actually have not had this feeling in a couple of months! Thank God. What the fatigue feels like to me is I wake up and before even lunch time I feel like I have not slept in days and I absolutely must have a nap! My eyes will be heavy and I can not concentrate on anything but how tired I feel. This is most often when i feel the vibrating inside. I will lay down and try to rest...only to have this vibrating going on inside me that will simply not go away no matter what position I change to. Even if I do catch a nap..the fatigue does not completely go away. This can go on for weeks.
The sudden stupidity/dumbness in my right hand has only recently started going on within the past few months that I have noticed. I wrote it off as maybe I needed more practice on the piano even though I practice daily. Then I started messing up in my typing only with my right handed letters. I have always had great typing skills.. at least 70 wpm and no carpel tunnel symptoms or wrist pain. It was like my brain would blink and go "duh" while I was reading the music notes or thinking the words I was typing and seemed very unusual to me. It isn't a constant happening, but it does alarm me when it happens. I will bring it up to the neuro on the 14th.
Ahhh...I feel better though just getting that all written/typed out. A listening ear anyways... better than the neuro I saw a few weeks ago. Grrr.
Quix.. you know with the hands and feet you know..I have had the tingling for so long it is almost just part of ME. I want to say both hands at the same time. (Feet came later I think but started both feet at same time too I guess..not just one first) I know it is more pronounced and noticeable now. Use to be like a low hum in my teens, like a slight annoyance but not really bothersome. But now it is just there and letting me always be aware of it. Always in both hands (and feet) but if I hold something really warm in one hand..that hand will tingle harder. Or washing the dishes in a little hotter than warm water really gets the hands going. And an especially weird thing...If I clap my hands together you know how you get the higher amount of tingle? It lasts that higher amount for a long time.. it does not go right away..as if it won't forgive me for the clap I put it through (if you understand that way of putting it). As I said..I've had this tingle in hands and feet since mid/late teens but it has only in the last couple years become very noticeable and only in the last year become very bothersome.
*I have recently had some average blood lab work done...Glucose was normal at 94, CBC was normal and I am not anemic, Thyroid was 0.9 and normal and Sedimentation rate was normal* I was just told this today by my family Dr because she was worried about the numbness/tingle I described to her. The neuro also did some bloodwork but I don't know what kind or what the results were yet.
Moving to Texas was the most horrible thing I could have done to myself heat wise. I am so glad there there are others who understand what simple heat can make a person feel like! I have been here for 3 years now. My husband does not really understand how it affects me and it has put a strain on us (I tear up at the mention of this, the heat is a biggie for me because it interferes with my life) and for the longest time I thought that I must be a very big wimp. A nice hot shower or a nice tub soak with a good book(something I like because it is relaxing) starts out fine but ends with me feeling miserable and needing to actually rest from. Our family loves to go camping and fishing and it is hard for me not to complain. I feel like a burden sometimes when we have family time outdoors and I am a healthy weight, not out of shape, we eat very healthy and hardly any processed foods (grow our own organic mostly) and should not be having to rest so much from just a walk outdoors. And a hobby of mine is gardening but it has become so difficult for me with the sudden "fatigue" that sometimes happens, my energy that suddenly disappears. I think the heat is what saps my energy. And what I call "irking" is this weird thing with my hands where I can't handle touching warm clothes from the dryer. Because of the tingling in my hands already and the creepy crawly thing it does to the ends of my fingers it makes me want to constantly flick my fingers against my thumbs as if I could get the tingle to fling off them. It looks completely stupid to be honest and I just keep my hands balled up if they are irking. Ugh...I just hate it. I have to make my oldest daughter fold the laundry that is fresh from the dryer. But I must say I have always had a similar sort of "irk" since I was a kid. I was born premature (I am an identical twin) and my sister had this thing where she took most of the nutrients/food and so she weighed 4 lbs and I only weighed 2 and we were born 6 weeks early. I have always not liked to have my feet rub on carpet or my hands rub on carpet or certain texture cloths etc. It literally hurts me inside (this will probably make no sense..it does not even make sense to me..I just call it my "irk") And it has nothing to do with the tingling I have in my hands and feet now Im sure since I didn't have those until my teens. At least, that is what I am guessing. To this day I can not walk on carpet with bare feet unless I curl up my toes (lol I know...yes I am a 30 yr old adult and it's a bit silly) and I make my kids wear shoes on carpet so I don't have to see them rub their feet on carpet *blush*) That is explaining just so you get my definition of what "irk" is to me. My family knows it well :)
Anyways...the fatigue. I actually have not had this feeling in a couple of months! Thank God. What the fatigue feels like to me is I wake up and before even lunch time I feel like I have not slept in days and I absolutely must have a nap! My eyes will be heavy and I can not concentrate on anything but how tired I feel. This is most often when i feel the vibrating inside. I will lay down and try to rest...only to have this vibrating going on inside me that will simply not go away no matter what position I change to. Even if I do catch a nap..the fatigue does not completely go away. This can go on for weeks.
The sudden stupidity/dumbness in my right hand has only recently started going on within the past few months that I have noticed. I wrote it off as maybe I needed more practice on the piano even though I practice daily. Then I started messing up in my typing only with my right handed letters. I have always had great typing skills.. at least 70 wpm and no carpel tunnel symptoms or wrist pain. It was like my brain would blink and go "duh" while I was reading the music notes or thinking the words I was typing and seemed very unusual to me. It isn't a constant happening, but it does alarm me when it happens. I will bring it up to the neuro on the 14th.
Ahhh...I feel better though just getting that all written/typed out. A listening ear anyways... better than the neuro I saw a few weeks ago. Grrr.
I have a question in your response to Dawn, you asked if both hands began tingling or one then the other same as the feet? Why is this important? I started out with one hand and one leg tingling now its both not always at the same time though? I haven't been dx w/ MS just wondering. The only positive test thus far is the abnormal VEEG and that he said was not your typical seizures it was due to inflammation in the brain. I started Trileptal yesterday. I have some small foci of white matter ( 2-3 lesions) unchanged in 6months. Thanks for your input.
Mary Beth
Mary Beth
Hi, Dawn, I'm glad you found us. You are in that awful position of knowing that something is wrong, and having seen a totally defective, jerk of a neurologist, you wonder how you will be able to get someone to listen to you. I am Quix. I am a retired pediatrician with MS. I spend my time here unofficially trying to help people get the work up and answers they need and, hopefully, the diagnosis they deserve. I am not a neurologist and I cannot diagnose anything online. But, I can speak about the things you have told us in the context of MS and those diseases that mimic MS.
Sonaya gave you a lot of good advice, as will other people here. It truly is a great bunch of women and men who know a lot and have been through more.
You describe a great number of symptoms that can be MS, but can also be part of other disorders, some of them as simple as a vitamin B12 deficiency. The diagnosis of MS starts with a VERY THOROUGH History and Physical. The doctor should ask about the timing of how the symptoms began, how they lasted and if they went away completely or partially. They should ask about your diet and meds and supplements and your family history of any neuro disorders. They should do a thorough neurological exam, head to toe examining all the nerves of your eyes and face, your balance and coordination, muscle strength all over, reflexes, your able to feel sharp, vibrational, and position all over, the pattern and smoothness of your gait, and more. Clearly you didn't get this.
The Restless Legs, muscle twitches and headaches are common and do not point at all to MS. That said, RLS is more common in the MS population than in the general population.
What catches my attention more is the inability to tolerate any heat. I bet summers there in Texas have become difficult for you. This is very common in MS and in a few other disorders. The creepy-crawly (pins&needles) sensations are also very common, but again these can be a part of many diseases.
The weird vibrational feelings don't seem to be understood by many neurologists, but we know them well here!! Most of us have had them in one form or another. They do not mean you have MS, but it is a symptom we all understand.
I have a question, Did both hands begin tingling at the same time or did one hand begin and the other eventually join in? Same with your feet?
The fatigue that stops us in our tracks is another very common symptom in MS, but also occurs in other disorders. It is a type of fatigue that is different from just being tired for most of us.
The sudden stupidity (I like that!) of your right hand is concerning and the doctor needs to pay attention to this. Because you play the piano, you have better fine motor control than many and the simple tests done by the neuro might not show the problem, so you need to make this very clear.
Well, it's late at night and I need to goto bed, so I will finish talking to you tomorrow evening. I just want to welcome you again and to reinforce what Sonaya said. An important part of the work up for MS is showing that you don't have something else. So you will be needing a good and, again thorough, testing for those other diseases. You need to begin looking for a new neurologist. This guy was a loser, and he probably billed insurance for a full exam!!
I hope you'll hear from a bunch of others tomorrow. There is so much to say. It's a good group and I think you will enjoy being here. I hope they will talk to you about forming a Timeline of your symptoms so we can see any patterns developing of them coming and going.
Take care, we specialize in helping people find their diagnosis - whatever it may be.
Quix
Sonaya gave you a lot of good advice, as will other people here. It truly is a great bunch of women and men who know a lot and have been through more.
You describe a great number of symptoms that can be MS, but can also be part of other disorders, some of them as simple as a vitamin B12 deficiency. The diagnosis of MS starts with a VERY THOROUGH History and Physical. The doctor should ask about the timing of how the symptoms began, how they lasted and if they went away completely or partially. They should ask about your diet and meds and supplements and your family history of any neuro disorders. They should do a thorough neurological exam, head to toe examining all the nerves of your eyes and face, your balance and coordination, muscle strength all over, reflexes, your able to feel sharp, vibrational, and position all over, the pattern and smoothness of your gait, and more. Clearly you didn't get this.
The Restless Legs, muscle twitches and headaches are common and do not point at all to MS. That said, RLS is more common in the MS population than in the general population.
What catches my attention more is the inability to tolerate any heat. I bet summers there in Texas have become difficult for you. This is very common in MS and in a few other disorders. The creepy-crawly (pins&needles) sensations are also very common, but again these can be a part of many diseases.
The weird vibrational feelings don't seem to be understood by many neurologists, but we know them well here!! Most of us have had them in one form or another. They do not mean you have MS, but it is a symptom we all understand.
I have a question, Did both hands begin tingling at the same time or did one hand begin and the other eventually join in? Same with your feet?
The fatigue that stops us in our tracks is another very common symptom in MS, but also occurs in other disorders. It is a type of fatigue that is different from just being tired for most of us.
The sudden stupidity (I like that!) of your right hand is concerning and the doctor needs to pay attention to this. Because you play the piano, you have better fine motor control than many and the simple tests done by the neuro might not show the problem, so you need to make this very clear.
Well, it's late at night and I need to goto bed, so I will finish talking to you tomorrow evening. I just want to welcome you again and to reinforce what Sonaya said. An important part of the work up for MS is showing that you don't have something else. So you will be needing a good and, again thorough, testing for those other diseases. You need to begin looking for a new neurologist. This guy was a loser, and he probably billed insurance for a full exam!!
I hope you'll hear from a bunch of others tomorrow. There is so much to say. It's a good group and I think you will enjoy being here. I hope they will talk to you about forming a Timeline of your symptoms so we can see any patterns developing of them coming and going.
Take care, we specialize in helping people find their diagnosis - whatever it may be.
Quix
Oh my yet another nasty neuro.....you will find many of us here who have had some very bad experiences with doctors, specialists, neuros etc etc etc. First thing I would do is go see ANOTHER NEURO.
I am suffering similar symptoms where my doctors want to put it down to migraines, I am having an EEG next week for the twitching too. I have some classic MS symptoms and yet then I have some others that just don't fit.
I think for you, more testing needs to be done.
In saying about migraines, migraines can in actual fact cause many of our problems too.Ive been doing some research on all the many different types of migraine out there, and let me tell you they can be nasty in itself. I went through the intial stages of ....oh they are just trying to pass me off as a migraine patient and thats it. But because all my symptoms dont really fit neatly into the migraine, ms, epilepsy or lupus categories, Im going to have to push to be seen by several specialists to get to the bottom of this.
Its a very frustrating time, but just know yo ur not alone and many of us here, are lurkers and stick around this MS forum, not because we have a confirmed diagnosis of MS but because the ladies here are so very wonderfully supportive and we all know what its like waiting for results, tests, a diagnosis etc etc.
If you read some of the posts around the place here, you will find many of us might have started out wondering if we had MS. I was even told by one doctor I might have it, but tests so far have proved not.
Try to start getting copies of all your results....ring around, get the actual copies of the reports- gather your information- write down a little timeline, diary of whats been happening to you and then go get a referral for a new neuro. This one to me was no good at all and the fact they did no other form of physical exam on you is not right.
Just my thoughts.
All the best
I am suffering similar symptoms where my doctors want to put it down to migraines, I am having an EEG next week for the twitching too. I have some classic MS symptoms and yet then I have some others that just don't fit.
I think for you, more testing needs to be done.
In saying about migraines, migraines can in actual fact cause many of our problems too.Ive been doing some research on all the many different types of migraine out there, and let me tell you they can be nasty in itself. I went through the intial stages of ....oh they are just trying to pass me off as a migraine patient and thats it. But because all my symptoms dont really fit neatly into the migraine, ms, epilepsy or lupus categories, Im going to have to push to be seen by several specialists to get to the bottom of this.
Its a very frustrating time, but just know yo ur not alone and many of us here, are lurkers and stick around this MS forum, not because we have a confirmed diagnosis of MS but because the ladies here are so very wonderfully supportive and we all know what its like waiting for results, tests, a diagnosis etc etc.
If you read some of the posts around the place here, you will find many of us might have started out wondering if we had MS. I was even told by one doctor I might have it, but tests so far have proved not.
Try to start getting copies of all your results....ring around, get the actual copies of the reports- gather your information- write down a little timeline, diary of whats been happening to you and then go get a referral for a new neuro. This one to me was no good at all and the fact they did no other form of physical exam on you is not right.
Just my thoughts.
All the best
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