bella67
04-23-2007, 02:44 PM
I was diagnosed about 3 yrs ago with fibromyalgia. I never really felt I matched the symptoms, but my doctor did blood work, and a general exam and didn't find any other conclusion to my issues. Today, I've been having some really scary symptoms and I think whatever I have is getting worse. Three days ago I began to get numb sensations on parts of my head. During that time I was also experiencing numb and tingling feet and hands. Now I was in a store with my sister walking around and I felt like I couldn't walk properly. I was having to swing my legs forward to get them to go. I began leaning on the cart just to take off some of the pressure, but eventually I had to sit down to take a break. I also get this tightness and aching in my shoulders and chest, along with these surges of electrical type pains down my arms and legs. For a long time I would have problems with my hands too. Even when I was a kid I couldn't write for a long period of time because my hands would just fall asleep at any given time. The fatigue is horrible! I try to get things done, but I pay for it later because I've just wore myself out with simple tasks. My vision isn't that great either. I get dimming in both eyes where it feels like I'm looking through sunglasses when I'm not. My right eye gets blurry and foggy all the time too. I have never been to a neurologist and I'm wondering if this is something that I should be concerned about? The reason I ask is because last time I tried to figure out what was wrong with me I was put on this specialist "rollercoast" where one doc would shuffle me off to the other, finding zero answers. Another reason that I've put it off is because I can't tolerate MRI machines from severe claustrophobia.
I have 2 disabled children and I can't afford to be in the hospital or incapacitated for an extended period of time, but I feel like my symptoms are becoming more and more debilitating. :confused:
I have 2 disabled children and I can't afford to be in the hospital or incapacitated for an extended period of time, but I feel like my symptoms are becoming more and more debilitating. :confused:
Sponsor
MSNik
04-23-2007, 03:10 PM
Hi Bella. I read your post and decided to respond to you because you sound so scared. And, something you wrote worried me. You said you have NEVER been to a Neurologist?? Who diagnosed your Fibro? Im afraid to ask. Sweetie, your symtoms do match MS symtoms to a certain extent, and they definately sound Neurological. There are so many things which are similar to MS, that you cant automatically assume that you have it, but you really need to see a Neuro. And, possibly an opthamologist. You sound from your eye symtoms like you have optical neuritis..not a huge deal, but it needs to be treated (usually with steroids, and always at home, or else outpatient). Not something which will screw you up for any period of time (the tests I mean). IN fact, none of my MS tests had me laid out for more than a few hours, the spinal tap had me flat on my back for an afternoon, but at least I was at home. I can relate to you being afraid of having to be away from your kids....
However, if you dont get this under control, you are going to wind up in the hosptial and at that point, not having had any tests done, your going to be there for a few days. So, you need to look into this now, while you still can get help from your sister, or whomever to take you to the doctors on an outpatient visit. I dont know your insurance situation but you mentioned you have seen specialists before. My suggestion to you is to find a Neuro, one who actually does have MS patients, and get into see him or her asap. Start the ball rolling, this ball can take a very long time to get the answers, so the sooner you start the more problems you can ward off in the future. You might be experiencing an undiagnosed relapse as we speak; wouldnt it be nice to be put on some meds to at least help with the symtoms??
good luck, keep us posted.
Nikki
However, if you dont get this under control, you are going to wind up in the hosptial and at that point, not having had any tests done, your going to be there for a few days. So, you need to look into this now, while you still can get help from your sister, or whomever to take you to the doctors on an outpatient visit. I dont know your insurance situation but you mentioned you have seen specialists before. My suggestion to you is to find a Neuro, one who actually does have MS patients, and get into see him or her asap. Start the ball rolling, this ball can take a very long time to get the answers, so the sooner you start the more problems you can ward off in the future. You might be experiencing an undiagnosed relapse as we speak; wouldnt it be nice to be put on some meds to at least help with the symtoms??
good luck, keep us posted.
Nikki
bella67
04-23-2007, 03:47 PM
Nikki,
Thanks so much for replying so quickly!! I was diagnosed by an internist and rheumy 3 yrs ago. Since that time I've tried really hard to just go on with my life, but something just doesn't seem right. The reason the dr concluded FMS was because I was fatigued all the time, achie on certain trigger points, and I was also having flu-like symptoms. He ruled out other disorders, but figured this might be it. However, I can deal with pain, that's not the problem, but it's the loss of feeling, coordination, and strength that has bothered me. I used to walk all the time, now I get tired doing basic things. The head numbness is a new thing. It started on the top of my head and later diminished with tingling just yesterday. I really have nobody to help me with the kids. My youngest is classically autistic and nobody seems to know how to care for him, nor do they want to. :rolleyes: When I try to tell my husband how I'm feeling he tells me it's all in my head (HELLO, yes, i'm feeling it there too!!). About 6 months ago I was in to see my doctor because my left hand was just non-functional. She wanted me to go for an EMG because she suspected I had carpal tunnel. I never went because so many of my friends scared me saying it was a horrible test. Ok, so I chickened out and I know I should have had it done, but I really don't want them to find anything, if you know what I mean?..lol Not that I can't handle having something wrong with me, it's just that I have a huge responsibility on my shoulders right now and nobody to take over if i'm sick.
I agree though that if I can mimimize the damage, and feel better in the long run it is totally worth pursueing answers. Now I just have to find a doctor that knows what he's doing. I know this isn't a one shot deal, and it takes time for them to find out what's wrong with me, but I just hope it can be done with minimal trips to the doctor, and nothing that would land me in the hospital for a long period of time.
On a side note when I gave birth to both of my children I had epidurals each time. I had a really bad reaction where I was having seizure like muscle spasms going from the spine to my head. It was horrendous pain and each time I landed in an ambulance. All they did was send me home with muscle relaxants, but then it took weeks before they went away. Just metioned that because I don't know if there's a relation or not.
Thanks so much for your advice. I will try to get into the Neuro soon. :wave:
Thanks so much for replying so quickly!! I was diagnosed by an internist and rheumy 3 yrs ago. Since that time I've tried really hard to just go on with my life, but something just doesn't seem right. The reason the dr concluded FMS was because I was fatigued all the time, achie on certain trigger points, and I was also having flu-like symptoms. He ruled out other disorders, but figured this might be it. However, I can deal with pain, that's not the problem, but it's the loss of feeling, coordination, and strength that has bothered me. I used to walk all the time, now I get tired doing basic things. The head numbness is a new thing. It started on the top of my head and later diminished with tingling just yesterday. I really have nobody to help me with the kids. My youngest is classically autistic and nobody seems to know how to care for him, nor do they want to. :rolleyes: When I try to tell my husband how I'm feeling he tells me it's all in my head (HELLO, yes, i'm feeling it there too!!). About 6 months ago I was in to see my doctor because my left hand was just non-functional. She wanted me to go for an EMG because she suspected I had carpal tunnel. I never went because so many of my friends scared me saying it was a horrible test. Ok, so I chickened out and I know I should have had it done, but I really don't want them to find anything, if you know what I mean?..lol Not that I can't handle having something wrong with me, it's just that I have a huge responsibility on my shoulders right now and nobody to take over if i'm sick.
I agree though that if I can mimimize the damage, and feel better in the long run it is totally worth pursueing answers. Now I just have to find a doctor that knows what he's doing. I know this isn't a one shot deal, and it takes time for them to find out what's wrong with me, but I just hope it can be done with minimal trips to the doctor, and nothing that would land me in the hospital for a long period of time.
On a side note when I gave birth to both of my children I had epidurals each time. I had a really bad reaction where I was having seizure like muscle spasms going from the spine to my head. It was horrendous pain and each time I landed in an ambulance. All they did was send me home with muscle relaxants, but then it took weeks before they went away. Just metioned that because I don't know if there's a relation or not.
Thanks so much for your advice. I will try to get into the Neuro soon. :wave:
MSNik
04-23-2007, 10:09 PM
gee Bella, I almost do not know what to say. You are dealing with so much. I too, have a husband who tells me "its all in your head" alittle too often. Yup, it is, its called MS and it affects my brain. He doesnt laugh...
Anyway, I have no idea if youre previous episodes have anything to do with this, but my gut tells me that until you see a Neuro, a good one, get references, and make sure this one is up and up on MS and other neurological diseases. You dont want a Neuro who specializes in Parkinsons disease.you need a good general Neuro, or even an MS one, if you feel that you want to rule out or confirm MS..but, until you see someone, youre not going to know what to do; and youll probalby continue to decline with symtoms. I had that test done for carpal- it was done in my Neuro's office. It took about 10 minutes and it hurt less than a bee sting. It was over in a matter of seconds, the pain....each time he "stuck" me, I felt something, and the muscle jerked, but that was it...youve had children, this will be nothing!!
For the record, my best friend also has an autistic child. I spend alot of time around both of them, you have my empathy. These children need alot of special attention; however, they are some of the most loving kids on the planet.
Good luck to you, if there is anything we can do (I can do) or say, please ask...Ill be waiting to hear more from you.
Nikki
Anyway, I have no idea if youre previous episodes have anything to do with this, but my gut tells me that until you see a Neuro, a good one, get references, and make sure this one is up and up on MS and other neurological diseases. You dont want a Neuro who specializes in Parkinsons disease.you need a good general Neuro, or even an MS one, if you feel that you want to rule out or confirm MS..but, until you see someone, youre not going to know what to do; and youll probalby continue to decline with symtoms. I had that test done for carpal- it was done in my Neuro's office. It took about 10 minutes and it hurt less than a bee sting. It was over in a matter of seconds, the pain....each time he "stuck" me, I felt something, and the muscle jerked, but that was it...youve had children, this will be nothing!!
For the record, my best friend also has an autistic child. I spend alot of time around both of them, you have my empathy. These children need alot of special attention; however, they are some of the most loving kids on the planet.
Good luck to you, if there is anything we can do (I can do) or say, please ask...Ill be waiting to hear more from you.
Nikki
bella67
04-24-2007, 01:01 AM
That's really neat that you have someone in your world with Autism. I have always tried to spread awareness, but some people are not always receptive. Many confuse it with mental retardation, but my 10 yr old is on the honor roll and is a gifted student, and my younger one who can barely talk - can do complicated math, and does very well in other areas. It's just hard with the everyday stuff. My other son is 7 yrs old and we are still working on potty training still. :dizzy:
Anyways, I really appreciate the concern and advice. I hope things are going ok for you. I'm 39 and I feel like I'm 90.. lol Ahhh, gone are the days when you were fearless and faced each morning with energy and excitement. Now I'm just happy to get out of bed without hitting the floor. :p While the kids are in school tomorrow I'll be surfing around for the Neuro. I don't drive , so going far out to a top-notch doc is kinda hard. Whatever is wrong with me, I'll just take it one step at a time. My schedule is full most days so no time for self pity. However, I just get angry at myself that I can't accomplish as much as I want to in a day. My house has never been so disorganized. I used to be the biggest neat freak! It's clean, but cluttered and lifting things and moving stuff around just isn't possible.
Well, I'll keep you posted, and Thanks again for being so helpful!
Anyways, I really appreciate the concern and advice. I hope things are going ok for you. I'm 39 and I feel like I'm 90.. lol Ahhh, gone are the days when you were fearless and faced each morning with energy and excitement. Now I'm just happy to get out of bed without hitting the floor. :p While the kids are in school tomorrow I'll be surfing around for the Neuro. I don't drive , so going far out to a top-notch doc is kinda hard. Whatever is wrong with me, I'll just take it one step at a time. My schedule is full most days so no time for self pity. However, I just get angry at myself that I can't accomplish as much as I want to in a day. My house has never been so disorganized. I used to be the biggest neat freak! It's clean, but cluttered and lifting things and moving stuff around just isn't possible.
Well, I'll keep you posted, and Thanks again for being so helpful!
MSNik
04-24-2007, 05:26 PM
HI Bella, no need for thanks. If Im helpful to you, then Im grateful to be able to help. Im 40, and yes, I do have more knowledge than the average person of Autism....its a good thing to spread the word. Meanwhile lets worry about you. PLease, Keep in touch and let me know when you find that Neuro when your appt is, meantime, Ill be thinking of you..
Nikki
Nikki
c57s53
04-24-2007, 05:50 PM
To Bella and Nikki............regarding Autism, i have a 7 year old Grandson with Autism that I love dearly. He is such a special child, totally gifted with the computer and math, loves to read and sing, he has a total fettish with trains and doesn't verbalize as much as we would like, but he is so very special. It is very tiring to give them the attention that they need, as often as they need it and especially when you don't feel well yourself. I hope you can find a good Neuro that will get to the bottom of your problems and get you treated one way or another to make you feel better. My prayers are with you and your family. keep your chin up and just keep thinking that things will get better.
Connie
Connie
lilc
04-24-2007, 10:06 PM
Hi, Bella. A couple of things: The "electric shock" sensation, does that happen when you bend your neck forward (like putting your chin to your chest)?
Regarding head numbness, I get that sometimes, mainly the back side of my head. Pretty freaky, isn't it!
Also, I friend of my mother's was diagnosed with fibro. At the time I knew nothing at all about fibro OR MS. I thought she was a whiney old lady. Knowing what I know now (about the similarities between the 2 disorders) I am so ashamed of my prior opinion! I know now that she was very strong, wish I could see her again and tell her how much I admire her...
Finally (I know, more than "a couple" of things!) I lived next door to the most beautiful, adorable autistic little boy for about 5 years. Watched him grow from 1 to 6, never heard him speak a word. It took some time to gain his trust, but well worth the time. I loved little Johnny. A very cool thing was when he got a baby brother, 2 years younger. As they grew the littler guy would speak for both of them - he truly understood his big brother. I often remember a time when John did something wrong and got yelled at, the little guy came running to his mom and dad and declared, "WE're SORRY!"
I've only just "met" you, Bella, and I already feel inspired by you. Please, stay in touch!
Regarding head numbness, I get that sometimes, mainly the back side of my head. Pretty freaky, isn't it!
Also, I friend of my mother's was diagnosed with fibro. At the time I knew nothing at all about fibro OR MS. I thought she was a whiney old lady. Knowing what I know now (about the similarities between the 2 disorders) I am so ashamed of my prior opinion! I know now that she was very strong, wish I could see her again and tell her how much I admire her...
Finally (I know, more than "a couple" of things!) I lived next door to the most beautiful, adorable autistic little boy for about 5 years. Watched him grow from 1 to 6, never heard him speak a word. It took some time to gain his trust, but well worth the time. I loved little Johnny. A very cool thing was when he got a baby brother, 2 years younger. As they grew the littler guy would speak for both of them - he truly understood his big brother. I often remember a time when John did something wrong and got yelled at, the little guy came running to his mom and dad and declared, "WE're SORRY!"
I've only just "met" you, Bella, and I already feel inspired by you. Please, stay in touch!
bella67
04-24-2007, 11:39 PM
To Bella and Nikki............regarding Autism, i have a 7 year old Grandson with Autism that I love dearly. He is such a special child, totally gifted with the computer and math, loves to read and sing, he has a total fettish with trains and doesn't verbalize as much as we would like, but he is so very special. It is very tiring to give them the attention that they need, as often as they need it and especially when you don't feel well yourself. I hope you can find a good Neuro that will get to the bottom of your problems and get you treated one way or another to make you feel better. My prayers are with you and your family. keep your chin up and just keep thinking that things will get better.
Connie
Thanks Connie,
It really helps when others know what you go through and also the joy you experience from having wonderful kids like this. It does get tiring, but I realize that I was lucky enough not to have to go through what they do on a daily basis. I try my best to be understanding and patient, but some day are just exhausting like you said. Each person in my household has different eating preferences, sensory issues, and tolerance levels. Some days I feel like I'm in the twilight zone, but then I look at how far they've come and I feel so very grateful. :)
God bless your grandson, and I appreciate the prayers too!
Connie
Thanks Connie,
It really helps when others know what you go through and also the joy you experience from having wonderful kids like this. It does get tiring, but I realize that I was lucky enough not to have to go through what they do on a daily basis. I try my best to be understanding and patient, but some day are just exhausting like you said. Each person in my household has different eating preferences, sensory issues, and tolerance levels. Some days I feel like I'm in the twilight zone, but then I look at how far they've come and I feel so very grateful. :)
God bless your grandson, and I appreciate the prayers too!
bella67
04-24-2007, 11:49 PM
Hi, Bella. A couple of things: The "electric shock" sensation, does that happen when you bend your neck forward (like putting your chin to your chest)?
Regarding head numbness, I get that sometimes, mainly the back side of my head. Pretty freaky, isn't it!
Also, I friend of my mother's was diagnosed with fibro. At the time I knew nothing at all about fibro OR MS. I thought she was a whiney old lady. Knowing what I know now (about the similarities between the 2 disorders) I am so ashamed of my prior opinion! I know now that she was very strong, wish I could see her again and tell her how much I admire her...
Finally (I know, more than "a couple" of things!) I lived next door to the most beautiful, adorable autistic little boy for about 5 years. Watched him grow from 1 to 6, never heard him speak a word. It took some time to gain his trust, but well worth the time. I loved little Johnny. A very cool thing was when he got a baby brother, 2 years younger. As they grew the littler guy would speak for both of them - he truly understood his big brother. I often remember a time when John did something wrong and got yelled at, the little guy came running to his mom and dad and declared, "WE're SORRY!"
I've only just "met" you, Bella, and I already feel inspired by you. Please, stay in touch!
Lilc,
I don't really get the sensation when i bend my head, but usually if I've had a rough day, gotten over a cold, or had my monthly friend. :rolleyes: Then the sparks start to fly throughout my body. I used to think I had the chills, and I'd put on sweaters or blankets, only to feel overheated but still tingly. Just recently I began to get the numb spots on my head. I thought I was having a stroke or something, and that really freaked me out!! I sometimes get this rush of heat up the back of my neck too, and it can radiate down my arms and across my chest or spine. I had an ulnar injury a several years ago and ever since then my hand hasn't been back to normal either.
Kids are so sweet and understanding when they are younger. I have the opposite scenario here. My older one is very high functioning, so much so that you can barely tell he has it. His is classified as asperger's syndrome. Now my younger son has moderate Autism and behaves about 4 yrs behind his actual age. So, it's a challenge, but so are most of the things worth doing in life. ;) I do have more on my plate besides the kids. My husband also has bipolar disorder and asperger's as well, so there's alot of chaos to contend with. This is why I told nikki I don't have anyone I can really rely on if something happens to me.
I feel blessed to have found this board and look forward to talking more with all of you.
Thanks for the warm welcome!
Oh, and Nikki, I would have called the Neuro today, but my Dad was rushed to the ER and I had to go with my Mom. I definitely plan on calling tomorrow!
Regarding head numbness, I get that sometimes, mainly the back side of my head. Pretty freaky, isn't it!
Also, I friend of my mother's was diagnosed with fibro. At the time I knew nothing at all about fibro OR MS. I thought she was a whiney old lady. Knowing what I know now (about the similarities between the 2 disorders) I am so ashamed of my prior opinion! I know now that she was very strong, wish I could see her again and tell her how much I admire her...
Finally (I know, more than "a couple" of things!) I lived next door to the most beautiful, adorable autistic little boy for about 5 years. Watched him grow from 1 to 6, never heard him speak a word. It took some time to gain his trust, but well worth the time. I loved little Johnny. A very cool thing was when he got a baby brother, 2 years younger. As they grew the littler guy would speak for both of them - he truly understood his big brother. I often remember a time when John did something wrong and got yelled at, the little guy came running to his mom and dad and declared, "WE're SORRY!"
I've only just "met" you, Bella, and I already feel inspired by you. Please, stay in touch!
Lilc,
I don't really get the sensation when i bend my head, but usually if I've had a rough day, gotten over a cold, or had my monthly friend. :rolleyes: Then the sparks start to fly throughout my body. I used to think I had the chills, and I'd put on sweaters or blankets, only to feel overheated but still tingly. Just recently I began to get the numb spots on my head. I thought I was having a stroke or something, and that really freaked me out!! I sometimes get this rush of heat up the back of my neck too, and it can radiate down my arms and across my chest or spine. I had an ulnar injury a several years ago and ever since then my hand hasn't been back to normal either.
Kids are so sweet and understanding when they are younger. I have the opposite scenario here. My older one is very high functioning, so much so that you can barely tell he has it. His is classified as asperger's syndrome. Now my younger son has moderate Autism and behaves about 4 yrs behind his actual age. So, it's a challenge, but so are most of the things worth doing in life. ;) I do have more on my plate besides the kids. My husband also has bipolar disorder and asperger's as well, so there's alot of chaos to contend with. This is why I told nikki I don't have anyone I can really rely on if something happens to me.
I feel blessed to have found this board and look forward to talking more with all of you.
Thanks for the warm welcome!
Oh, and Nikki, I would have called the Neuro today, but my Dad was rushed to the ER and I had to go with my Mom. I definitely plan on calling tomorrow!
MSNik
04-25-2007, 10:00 AM
HI Bella. I hope your dad is okay. I have been following along here- but personally Ive been feeling crappy for the past two days. I think its just "that time of the month" crappiness, but overall, I feel like going to bed and staying there!
Interesting how many people are learning about Autism, isnt it? My husband came home from work and told me that a guy he works with, his 3 year old was just diagnosed yesterday, the poor man was beside himeslf at work. ITs a shame but as people learn more about it, the stigma will decrease.
I do hope your dad is okay...and please get yourself to a doctor !!
Hugs,
Nikki
Interesting how many people are learning about Autism, isnt it? My husband came home from work and told me that a guy he works with, his 3 year old was just diagnosed yesterday, the poor man was beside himeslf at work. ITs a shame but as people learn more about it, the stigma will decrease.
I do hope your dad is okay...and please get yourself to a doctor !!
Hugs,
Nikki
bella67
04-25-2007, 03:15 PM
Hey Nikki,
Sorry to hear you're not feeling hot today. :( I dunno where you're from but it's all cloudy and damp here in chicago, and I beat too, and having a painful day. I went to visit my dad this morning and he's not doing so hot. He has a mile long list of health problems, but mainly it's his heart and kidneys they are worried about. He started collecting fluid in his abdomen, and now they found his liver is leaking into it. So, this morning he had a liver biopsy, and later today he's getting fluid drained off, I think they call it parasenthesis. I tried to cheer him up with some things he likes, but he was just too exhausted to stay awake. Ty for asking about him.
As far as the Autism epidemic, it's now 1-150 children as opposed to last year when it was 1-166. Decades ago the prevelance was about 1-1000. So, yes, it is likely that everyone in the world knows someone effected by this disorder. Kinda hard to believe , ha?
Still working on the Neuro situation. I have it narrowed down to 2. So, that's progress I guess.. lol
hugz!
Lisa
Sorry to hear you're not feeling hot today. :( I dunno where you're from but it's all cloudy and damp here in chicago, and I beat too, and having a painful day. I went to visit my dad this morning and he's not doing so hot. He has a mile long list of health problems, but mainly it's his heart and kidneys they are worried about. He started collecting fluid in his abdomen, and now they found his liver is leaking into it. So, this morning he had a liver biopsy, and later today he's getting fluid drained off, I think they call it parasenthesis. I tried to cheer him up with some things he likes, but he was just too exhausted to stay awake. Ty for asking about him.
As far as the Autism epidemic, it's now 1-150 children as opposed to last year when it was 1-166. Decades ago the prevelance was about 1-1000. So, yes, it is likely that everyone in the world knows someone effected by this disorder. Kinda hard to believe , ha?
Still working on the Neuro situation. I have it narrowed down to 2. So, that's progress I guess.. lol
hugz!
Lisa
MSNik
04-25-2007, 05:04 PM
Hi Lisa,
Thats a start, 2 Neuros!! Make sure they treat MS patients, ok??
Sorry to hear about your dad. Im in the NY/Phila corridor, half way between each. THe weather today is warm, but also damp and rainy...
I feel for you, having to deal with your dad on top of all this is tough. Ill say a prayer for you and your family tongiht. Promise.
Keep us posted.
Nik
Thats a start, 2 Neuros!! Make sure they treat MS patients, ok??
Sorry to hear about your dad. Im in the NY/Phila corridor, half way between each. THe weather today is warm, but also damp and rainy...
I feel for you, having to deal with your dad on top of all this is tough. Ill say a prayer for you and your family tongiht. Promise.
Keep us posted.
Nik
Skimmer
04-25-2007, 09:50 PM
Hi everyone. I am lurking on this board, trying to find out what's wrong with my sister. She is having the numbness, heavy legs and arms and having trouble walking. It came on quite suddenly - so much so, that she went to the ER thinking she might be having a stroke or heart attack!! Well, they ruled all of that out. So far, she's had MRI, MRA, EKG, CAT Scan, sono of carotid artery, MRI of lumbar & thoracic, stress test (medically induced because she couldn't walk fast enough to get her heart rate up) and she's seen an opthamologist because this all started with her vision going blurry while driving one day. She had a retinal hemorrage in her eye. Sooooo - after all that - and all the tests coming back negative, they have told her to just sit tight and come back in 2 weeks and see if it's gotten any better? She's seeing a neurologist too. She's beside herself....and she has now given up driving, because she can't feel whether she's pushing down on the accellerator or not. She described her legs as "walking through taffy". I guess the last thing to do would be to get the spinal tap done to get a definite diagnosis for MS? They were also thinking it might be a case of Guilliane's Barre? She is also waking up in the middle of the night with a racing pulse - and that happened in the ER too - fine one minute, then a racing pulse the next. Does this sound like MS?? Thanks for all your posts - they really do help everyone....it's scary how many people are out there walking around in pain, with something wrong, and none of the doctor's can figure it out!!
bella67
04-26-2007, 08:40 AM
Thanks Nik,
I'll say a prayer for you too! He was well enough to call me late last nite to complain about the nurses, so hopefully he's feeling a bit better. I am kinda used to handling chaos, but when you're not feeling great it does seem overwhelming at times.
Have a great day (or at least try to;) )
Lisa
I'll say a prayer for you too! He was well enough to call me late last nite to complain about the nurses, so hopefully he's feeling a bit better. I am kinda used to handling chaos, but when you're not feeling great it does seem overwhelming at times.
Have a great day (or at least try to;) )
Lisa
c57s53
04-26-2007, 12:09 PM
Hi everyone. I am lurking on this board, trying to find out what's wrong with my sister. She is having the numbness, heavy legs and arms and having trouble walking. It came on quite suddenly - so much so, that she went to the ER thinking she might be having a stroke or heart attack!! Well, they ruled all of that out. So far, she's had MRI, MRA, EKG, CAT Scan, sono of carotid artery, MRI of lumbar & thoracic, stress test (medically induced because she couldn't walk fast enough to get her heart rate up) and she's seen an opthamologist because this all started with her vision going blurry while driving one day. She had a retinal hemorrage in her eye. Sooooo - after all that - and all the tests coming back negative, they have told her to just sit tight and come back in 2 weeks and see if it's gotten any better? She's seeing a neurologist too. She's beside herself....and she has now given up driving, because she can't feel whether she's pushing down on the accellerator or not. She described her legs as "walking through taffy". I guess the last thing to do would be to get the spinal tap done to get a definite diagnosis for MS? They were also thinking it might be a case of Guilliane's Barre? She is also waking up in the middle of the night with a racing pulse - and that happened in the ER too - fine one minute, then a racing pulse the next. Does this sound like MS?? Thanks for all your posts - they really do help everyone....it's scary how many people are out there walking around in pain, with something wrong, and none of the doctor's can figure it out!!
Hi Skimmer....I don't know what your sister's ailment is, but it sounds painfully the same as what I experience when i am having a flare of Fibromyalgia. my legs and arms hurt so bad I can't hold the blow dryer to dry my hair, I can't fold laundry, and my husband pushes me in a wheelchair. I get brain fog where it feels like I have an infection in my head, dizzy spells. my limbs feel like they weigh a ton each, it's difficult to concentrate....so many issues with Fibromyalgia and it seems fairly consistent to have it with some autoimmune conditions like MS, Lupus. I hope your sister finds an answer to her problems soon, but in the interim she should try aquatic therapy to at least work her muscles a little. When she gets out of the water her legs will feel like a ton but at least while she in the water she will be able to move somewhat better. Is she seeing a Rheumatologist to rule out some things?
Connie
Hi Skimmer....I don't know what your sister's ailment is, but it sounds painfully the same as what I experience when i am having a flare of Fibromyalgia. my legs and arms hurt so bad I can't hold the blow dryer to dry my hair, I can't fold laundry, and my husband pushes me in a wheelchair. I get brain fog where it feels like I have an infection in my head, dizzy spells. my limbs feel like they weigh a ton each, it's difficult to concentrate....so many issues with Fibromyalgia and it seems fairly consistent to have it with some autoimmune conditions like MS, Lupus. I hope your sister finds an answer to her problems soon, but in the interim she should try aquatic therapy to at least work her muscles a little. When she gets out of the water her legs will feel like a ton but at least while she in the water she will be able to move somewhat better. Is she seeing a Rheumatologist to rule out some things?
Connie
MSNik
04-26-2007, 06:29 PM
HI Lisa and Connie and Skimmer-
Lisa, hows your dad today? Ive been sending you positive vibes all day....I hope that your dad is better and that you are feeling good today as well. I made it thru my week- thursday is my Friday, since I take most fridays off...so, I made it!
Connie and Skimmer- First of all, since your post has such specific symtoms, questions... I am suggesting starting a new thread and not continuing this one with your questions....reason being I want you to get the full benefit of everyone reading it and being able to help you with your questions...not for any other reason.
But since you did start it here, Im going to tell you- your sisters symtoms could be absolutely anything but do sound neurological. The racing pulse, Im betting is axiety related. Not to say that she is crazy, but most likely terrified. Almost all of us have experienced that pulse racing really scary feeling. ITs almost normal. There are several drugs which can help her get thru this period, and none of them have to be taken long term or need to be addictive. Theres a huge difference between anti-anxiety and anti-depressents, her doctor can help her with this. Does she have a primary care provider she can see while waiting to see the Neuro?? As for the exact symtoms you described, some of them sound like MS- some of them Ive experienced..but many of them do not. Its going to take a really good Neurologist to rule out or dx MS...as for the other diseases, I do not have them, know very little about them and hesitate to comment.
I really think you should post something in the main thread area asking if anyone else has had these symtoms, or if they have had similar experiences. Youll get more feedback then inserting this into this thread. Unforunately this thread has been going on for awhile and since Lisa and I seem to be the only ones jumping in (for the most part) you might get alot more response by opening up a new thread...does that make sense? Please do not feel that we dont want you here. WELCOME to our board but hopefully not to our world!! We dont wish anyone to become a member, but we certanly do welcome you and your questions with open arms.
Nikki
Lisa, hows your dad today? Ive been sending you positive vibes all day....I hope that your dad is better and that you are feeling good today as well. I made it thru my week- thursday is my Friday, since I take most fridays off...so, I made it!
Connie and Skimmer- First of all, since your post has such specific symtoms, questions... I am suggesting starting a new thread and not continuing this one with your questions....reason being I want you to get the full benefit of everyone reading it and being able to help you with your questions...not for any other reason.
But since you did start it here, Im going to tell you- your sisters symtoms could be absolutely anything but do sound neurological. The racing pulse, Im betting is axiety related. Not to say that she is crazy, but most likely terrified. Almost all of us have experienced that pulse racing really scary feeling. ITs almost normal. There are several drugs which can help her get thru this period, and none of them have to be taken long term or need to be addictive. Theres a huge difference between anti-anxiety and anti-depressents, her doctor can help her with this. Does she have a primary care provider she can see while waiting to see the Neuro?? As for the exact symtoms you described, some of them sound like MS- some of them Ive experienced..but many of them do not. Its going to take a really good Neurologist to rule out or dx MS...as for the other diseases, I do not have them, know very little about them and hesitate to comment.
I really think you should post something in the main thread area asking if anyone else has had these symtoms, or if they have had similar experiences. Youll get more feedback then inserting this into this thread. Unforunately this thread has been going on for awhile and since Lisa and I seem to be the only ones jumping in (for the most part) you might get alot more response by opening up a new thread...does that make sense? Please do not feel that we dont want you here. WELCOME to our board but hopefully not to our world!! We dont wish anyone to become a member, but we certanly do welcome you and your questions with open arms.
Nikki
Skimmer
04-26-2007, 06:45 PM
Thanks Nikki and Connie and Lisa. I will try and post this in a new thread - I think she has decided to get the spinal tap to rule one way or the other and to try and find a Dr. in the Tampa area that specializes in MS symptoms...
Thanks for your posts.....
Skimmer
Thanks for your posts.....
Skimmer
MSNik
04-26-2007, 08:48 PM
Skimmer, its an excellent idea to find an MS specialist...a spinal tap is very important, although there have been patients who have had a negative spinal tap, and still had MS...its such a hard disease to track and diagnosis. The key to a good diagnosis, is a good doctor. God Bless and good luck to your sister.
PLease do start a thread. We all have things to say which might help!
Nikki
PLease do start a thread. We all have things to say which might help!
Nikki
bella67
04-27-2007, 03:45 PM
Nik,
He's a bit better, but still pretty sick. Keep those good vibes coming though, because he can use them... lol As far as myself I'm not having a good day physically. I'm very off balance, I feel like I'm carrying bricks on my back, and the numbess is still happening. My sister even noted today that I'm walking funny. I called the neuro but they are out to lunch. I'm trying back in an hour.
Hope you're having a better day though!
luv n hugs
Lisa
He's a bit better, but still pretty sick. Keep those good vibes coming though, because he can use them... lol As far as myself I'm not having a good day physically. I'm very off balance, I feel like I'm carrying bricks on my back, and the numbess is still happening. My sister even noted today that I'm walking funny. I called the neuro but they are out to lunch. I'm trying back in an hour.
Hope you're having a better day though!
luv n hugs
Lisa