Willow97
09-04-2008, 06:02 PM
:wave: Just wanted to say this is my first time on this Message board, and I must say it is the best one I have come across...just seems to have a more human touch!
I am in the midst of trying to find out what is going on with me...a really long journey(nightmare, more like it)...
Anyway, I was diagnosed with Fibromyalgia Nov/07, I really think there is more going on.
Since approx. June/06 I have had many episodes of symptoms (ie. internal vibrations- all over my body, vision-double, blurry, smokey and sometimes achy eyes, tingling and numbness in different places- hands,feet, legs and most recently my face and tongue went almost completly numb(scary). sensation of cold water dripping on legs or sitting on a wet chair. arm pain and weakness, leg weakness, cognitive problems across the board, head tingling(like an egg was cracked over my head) I'm sure there is more but I'm sure you get the idea...
I am just so sick and tired of being sick and tired....I did have an MRI in June/07 that came back all clear. Then the symptoms got better for a while, but everytime it comes back it seems worse and a little different. I am finally going to a Neuroligist on Monday...I just want answers so I can try to get my life back...
Sorry, so long I just got on a roll.....Any imput you have would be appreciated.............. thanks Willow97 :)
I am in the midst of trying to find out what is going on with me...a really long journey(nightmare, more like it)...
Anyway, I was diagnosed with Fibromyalgia Nov/07, I really think there is more going on.
Since approx. June/06 I have had many episodes of symptoms (ie. internal vibrations- all over my body, vision-double, blurry, smokey and sometimes achy eyes, tingling and numbness in different places- hands,feet, legs and most recently my face and tongue went almost completly numb(scary). sensation of cold water dripping on legs or sitting on a wet chair. arm pain and weakness, leg weakness, cognitive problems across the board, head tingling(like an egg was cracked over my head) I'm sure there is more but I'm sure you get the idea...
I am just so sick and tired of being sick and tired....I did have an MRI in June/07 that came back all clear. Then the symptoms got better for a while, but everytime it comes back it seems worse and a little different. I am finally going to a Neuroligist on Monday...I just want answers so I can try to get my life back...
Sorry, so long I just got on a roll.....Any imput you have would be appreciated.............. thanks Willow97 :)
Sponsor
DavidLeeK
09-04-2008, 06:11 PM
Willow, welcome to the forums and sorry to hear about your symptoms
there are so many things that can mimic MS, that it can be hard to find the problems sometimes
the neurologist should be able to get you on the right path to diagnosis, hopefully another MRI, blood work, and go from there
keep us up to date on what is happening
there are so many things that can mimic MS, that it can be hard to find the problems sometimes
the neurologist should be able to get you on the right path to diagnosis, hopefully another MRI, blood work, and go from there
keep us up to date on what is happening
Nenu
09-04-2008, 06:49 PM
Welcome Willow! :)
A lot of your symptoms you mention do sound in the field of MS, but certainly not restricted to MS.
When you had your previous MRI, was it brain only? Make sure if possible to have an MRI from head to spine. Lesions from MS can also appear in the spinal area.
How long do your symptoms present? You mention they come and go. Make sure you make a list up for your appointment of symptoms you've experienced so you can provide this to your neurologist you see, who will ask about symptoms.
A lot of your symptoms you mention do sound in the field of MS, but certainly not restricted to MS.
When you had your previous MRI, was it brain only? Make sure if possible to have an MRI from head to spine. Lesions from MS can also appear in the spinal area.
How long do your symptoms present? You mention they come and go. Make sure you make a list up for your appointment of symptoms you've experienced so you can provide this to your neurologist you see, who will ask about symptoms.
april1848
09-04-2008, 07:43 PM
Welcome!
I agree with Nenu that the symptoms could be MS, but they could be something else. Make sure you get bloodwork to rule out other things, like Lupus, that mimic MS. An MRI of the cervical spine is a good idea, and a spinal tap may help you get answers too. To diagnose MS, you have to rule out everything else first.
You may also want another MRI of the brain, since lesions can appear somewhat quickly. There are people on this site with MS who have clean MRIs. Seeing a neurologist is a great idea! If he/she can't figure it out, I would suggest seeing an MS specialist. They know exactly what to look for.
This is a tough journey. Please feel free to come here often and ask questions or vent. Everyone here is incredibley supportive and understanding. You will never be alone here! Please keep us updated and let us know what the neuro says.
I agree with Nenu that the symptoms could be MS, but they could be something else. Make sure you get bloodwork to rule out other things, like Lupus, that mimic MS. An MRI of the cervical spine is a good idea, and a spinal tap may help you get answers too. To diagnose MS, you have to rule out everything else first.
You may also want another MRI of the brain, since lesions can appear somewhat quickly. There are people on this site with MS who have clean MRIs. Seeing a neurologist is a great idea! If he/she can't figure it out, I would suggest seeing an MS specialist. They know exactly what to look for.
This is a tough journey. Please feel free to come here often and ask questions or vent. Everyone here is incredibley supportive and understanding. You will never be alone here! Please keep us updated and let us know what the neuro says.
Tasia W
09-04-2008, 08:39 PM
Willow,welcome to the board. You are right this board has a great "human touch" and hope that you find the answers and support that you are seeking;)
Tasia
Tasia
zadie
09-04-2008, 09:23 PM
Welcome
Willow it can be along road getting some kind of solution but this place is a great sounding board a great bunch of people.
Michele
Willow it can be along road getting some kind of solution but this place is a great sounding board a great bunch of people.
Michele
Willow97
09-04-2008, 09:44 PM
Thanks everyone for your caring support, it's nice to not feel alone!!!
A little more info. on my "Journey" it has been going on for more than 2 years now. My GP originally thought it could be MS, hence the first MRI just of my brain. Turned out normal and I seemed to get better, for a while at least until it hit again so he sent me to a Rheumy because of my achy joints, he ran all kinds of tests to rule out things like RA and Lupus...
During this time I would get a bit better, but not totally, lots of fatigue also. But for the last year my symptoms are more neurological sensations, lots of dizziness too...sometimes so bad I don't drive...Hence the reason I no longer drive School Bus (not good to have a dizzy bus driver:dizzy:) But some day's it might have been helpful :)
Anyway, during my researching symptoms I keep coming back to MS. I pray it's not, but at this point I just want to know.....I have so much living to do!
I feel really confident in the Neuro. I am going to see on Monday, because I know that during his residency he was trained under the big MS specialist in Toronto...and also my friends daughter just went to see him also, she was just diagnosed with MS and Devic's...she is only 21 !!!!! Tough to see!
Thanks for caring.....I am really going to push for another brain MRI w/contrast and a Lumbar Puncture (Scary)
Willow :)
A little more info. on my "Journey" it has been going on for more than 2 years now. My GP originally thought it could be MS, hence the first MRI just of my brain. Turned out normal and I seemed to get better, for a while at least until it hit again so he sent me to a Rheumy because of my achy joints, he ran all kinds of tests to rule out things like RA and Lupus...
During this time I would get a bit better, but not totally, lots of fatigue also. But for the last year my symptoms are more neurological sensations, lots of dizziness too...sometimes so bad I don't drive...Hence the reason I no longer drive School Bus (not good to have a dizzy bus driver:dizzy:) But some day's it might have been helpful :)
Anyway, during my researching symptoms I keep coming back to MS. I pray it's not, but at this point I just want to know.....I have so much living to do!
I feel really confident in the Neuro. I am going to see on Monday, because I know that during his residency he was trained under the big MS specialist in Toronto...and also my friends daughter just went to see him also, she was just diagnosed with MS and Devic's...she is only 21 !!!!! Tough to see!
Thanks for caring.....I am really going to push for another brain MRI w/contrast and a Lumbar Puncture (Scary)
Willow :)
Nenu
09-04-2008, 11:42 PM
Thanks for caring.....I am really going to push for another brain MRI w/contrast and a Lumbar Puncture (Scary)
Yes, do push for MRI with contrast. That's important (smack me, I forgot to mention that!). My MRI looked 'fine' apparently reading the report without the contrast, but once they explored with contrast, it was a whole other tale. They found multiple lesions in the classic "MS area".
I only had a brain MRI, but I wish I had known more then to request the spine too. In any event, what they found on contrast on my brain MRI was sufficient to diagnose MS.
I had the LP procedure done. I'm a tiny girl, so my neuro thankfully didn't have to use anything but the smallest needle. Honestly, since they freeze you first (felt like a tiny sharp pinch, not bad at all) you will likely not feel much else, aside from a pressure feeling. I got a tickle down to my tailbone, which made me laugh (it felt tickly!).
Once you get up to the LP part (if they require this), if you have questions pop back in here, we'll be glad to share our 'post LP' experiences. Some good, some not so good, but definitely not a procedure in itself to worry about. I thought the 11 vials of blood was worse than the LP honestly.
Yes, do push for MRI with contrast. That's important (smack me, I forgot to mention that!). My MRI looked 'fine' apparently reading the report without the contrast, but once they explored with contrast, it was a whole other tale. They found multiple lesions in the classic "MS area".
I only had a brain MRI, but I wish I had known more then to request the spine too. In any event, what they found on contrast on my brain MRI was sufficient to diagnose MS.
I had the LP procedure done. I'm a tiny girl, so my neuro thankfully didn't have to use anything but the smallest needle. Honestly, since they freeze you first (felt like a tiny sharp pinch, not bad at all) you will likely not feel much else, aside from a pressure feeling. I got a tickle down to my tailbone, which made me laugh (it felt tickly!).
Once you get up to the LP part (if they require this), if you have questions pop back in here, we'll be glad to share our 'post LP' experiences. Some good, some not so good, but definitely not a procedure in itself to worry about. I thought the 11 vials of blood was worse than the LP honestly.