MichelleRose
12-09-2004, 07:01 PM
Hello everyone, I'm newly DX, well if you want to call it that, I understand MS is very hard to dx. Anyway here are some of my syptoms and please if anyone has had any of these let me know, so I know I'm not going crazy or it's stress! Ok I have, left leg weakness, tingling in left leg, extreme pain in both legs like they are in a vice, I have right arm weakness and pain, left arm seems to be ok, extreme fatigue, slow thinking, slight short term memory loss, it takes me awhile to figure out what I want to say, muscle twitches in all parts of my body. I have had one episode of incontinence, and I have urgency and frequency in urination. Nothing wrong with the bowels. I have balanace issues, pain in the bottoms of my feet, and down my shins when I walk. This is something new as of this week, when I lay down I feel like my whole body is shaking but it's not, could this be a vision issue, and on 2 occasions I have had strobe lights in my eyes. Thanks for any support or information anyone can give me, this disease is sooo misunderstood! Thanks, Michelle
Sponsor
StephMA
12-09-2004, 08:45 PM
((Hugs)) to you. Who actually gave you your diagnosis? As you said, MS is difficult to diagnose. Also, the effectiveness of treatments are difficult to measure because in the case of relapsing/remitting MS, improvements can occur with or without treatment.
You've got a lot of different symptoms. Are they coming on quickly? If you read some of the older posts on this board you'll find info about other medical issues that resemble MS.
Your best bet for both diagnosis and treatment is to find a neurologist who specializes in MS, although I understand that's not always easy to do in some parts of the country.
To answer your questions, I don't have MS but my dh has relapsing/remitting MS. His first episode was that he woke up one morning in 1993 feeling like his legs were encased in concrete ... but he had full movement and control, just not the feeling. He was giving a series of neurological tests, but by the time they were finished he was fine. His next severe episode in 94 when he lost vision in his left eye. That's when an MRI of the head was done and he recieved the MS diagnosis. He did regain a lot of vision in that eye but has a 'blind spot'. Another time he was hit in the right eye, but that one recovered to 20/20 with glasses (which he wore before the Optical Neuritis anyway). He's had vairous episodes since then and has done a few steroid drips. His balance has deteriorated and he gets fatigued. He's had problems w/ urinating to sufficiently empty his bladder which in turns leads to Urinary Tract Infections. Your frequency/urgency issues could be signs of a UTI. These can be common among MS patients.
I hope you can get to the root of your dx and get some relief. (My dh has been on Copaxone for about 15 months ... he tried Avonex in the mid-90s , but his liver couldn't handle it.) I wish you the best.
You've got a lot of different symptoms. Are they coming on quickly? If you read some of the older posts on this board you'll find info about other medical issues that resemble MS.
Your best bet for both diagnosis and treatment is to find a neurologist who specializes in MS, although I understand that's not always easy to do in some parts of the country.
To answer your questions, I don't have MS but my dh has relapsing/remitting MS. His first episode was that he woke up one morning in 1993 feeling like his legs were encased in concrete ... but he had full movement and control, just not the feeling. He was giving a series of neurological tests, but by the time they were finished he was fine. His next severe episode in 94 when he lost vision in his left eye. That's when an MRI of the head was done and he recieved the MS diagnosis. He did regain a lot of vision in that eye but has a 'blind spot'. Another time he was hit in the right eye, but that one recovered to 20/20 with glasses (which he wore before the Optical Neuritis anyway). He's had vairous episodes since then and has done a few steroid drips. His balance has deteriorated and he gets fatigued. He's had problems w/ urinating to sufficiently empty his bladder which in turns leads to Urinary Tract Infections. Your frequency/urgency issues could be signs of a UTI. These can be common among MS patients.
I hope you can get to the root of your dx and get some relief. (My dh has been on Copaxone for about 15 months ... he tried Avonex in the mid-90s , but his liver couldn't handle it.) I wish you the best.
Dessell
12-09-2004, 09:01 PM
Hi MichelleRose,
Welcome:)
Hope you are handling things,this board is a good source to talk and meet others like yourself.I have the strobe lights at night also,drives me crazy!Have the strobe lights when eyes are open (being in the dark)and when I close my eyes,they jerk back and forth like watching cars go by.Are you taking any meds?I know how the fatique feels,but I have more energy now that the cooler weather is here,weird I know,lol.Wish you well and visit back here soon,
Dessell
Welcome:)
Hope you are handling things,this board is a good source to talk and meet others like yourself.I have the strobe lights at night also,drives me crazy!Have the strobe lights when eyes are open (being in the dark)and when I close my eyes,they jerk back and forth like watching cars go by.Are you taking any meds?I know how the fatique feels,but I have more energy now that the cooler weather is here,weird I know,lol.Wish you well and visit back here soon,
Dessell
tattoo31791
12-09-2004, 09:09 PM
MichelleRose,
I have some of the same symtoms, but not as many as you. I do fell the need to urinate more than usual. I had the numbness in my left leg and the tingling was more like pins and needles. My leg seems to be recovered now, but still have some weakness when I do alot of walking or standing. My Right arm and hand still have the numbness and tingling. I have noticed that I have to think of things in more depth now. I used to just be able to repeat things at work without any thinking.
My neuro has not confirmed if I have or do not have MS. Still waiting on Spinal Tap to come back (I see him on the 21st of Dec.), but he indicated that my symptoms do point in that direction. He has told me that it could be something else that has the same symptoms or symptoms that resemble MS.
Like everyone on here will tell you. Try not to worry and keep a journal of daily events. This will help you and the doctor with the diag.
Good luck and keep us posted.
I have some of the same symtoms, but not as many as you. I do fell the need to urinate more than usual. I had the numbness in my left leg and the tingling was more like pins and needles. My leg seems to be recovered now, but still have some weakness when I do alot of walking or standing. My Right arm and hand still have the numbness and tingling. I have noticed that I have to think of things in more depth now. I used to just be able to repeat things at work without any thinking.
My neuro has not confirmed if I have or do not have MS. Still waiting on Spinal Tap to come back (I see him on the 21st of Dec.), but he indicated that my symptoms do point in that direction. He has told me that it could be something else that has the same symptoms or symptoms that resemble MS.
Like everyone on here will tell you. Try not to worry and keep a journal of daily events. This will help you and the doctor with the diag.
Good luck and keep us posted.
MichelleRose
12-09-2004, 10:25 PM
First Of All I Want To Thank All Of You That Have Replied To My Post! I Wish You All The Best. I Am Seeing A Neurologist That Specializes In Ms. I Live In Ohio And He Is The Head Of The Neuro Clinic At The Medical College Of Ohio. It Helps That I Also Work There! :) He Said All The Signs Are There But Like We All Know Ms Does Mimic Other Things. I Had My Mri's With And Without Contrast Last Week, Still Haven't Heard Back Yet. I Had An Emg And They Found Damage In The Right Arm And Left Leg. I Go For My Vep On Wed. (12-15). I'm Not On Any Ms Drugs, But I Do Take 300mg Of Neurotin Tid. I Don't Think It's Helping As It Should, But I Do Notice That If I Forget To Take It, It Is Worse So I Guess It Is Helping To An Extent. I Haven't Had A Spinal Tap Yet, Not Looking Forward To It If I Do! I Didn't Have A Diary But Now That I Have Been Reading The Post, And My Memory Is Shot, I Just Started One Today! I Feel So Lucky To Have Found This Board And All Of You! Hugs And Prayers To You And Your Families!