In 2000 I had an MRI showing a large lesion on my spine and spinal tap showed the bands. My neuro wanted to confirm his diag of MS with a specialist. Prior to my appt I made a list of all the "odd" things that had occurred during the previous 20 yrs. This was very helpful when I was diag by the MS Specialist. I could have actually gone back much further. I was never into sports or any type of exercise program. However, my primary dr. as a teenager explained the pain in my knee and elbow was like having Tennis Elbow. At 13 I started suffering from extreme migraines. I've had the same type of vision problems as you describe and also have gone totally blind several times, which thankful only lasted a few minutes. I also had both thighs go numb, which prompted a visit to a Cardiologist. In 1981 when I was 5 mos pregnant with my first child, I lost feeling in my left hand, lost the right side of my vision, had stars floating in my eyes and couldn't remember my husband or my mother's names. Spent 2 weeks in the hospital with a diag. of TIA. From that point on I would have MRI every couple of yrs and always had a lesion which the drs. said was scar tissue from migraines. I have also suffered with the "MS Hug" since I was prob 6 or 7 but just recently found out what it was. I lost partial hearing in my right ear in 1983 and then a few yrs ago it came back and switched to my left ear....really thought I had lost my mind on that one. In '96 I lost control of my bladder. It would hit me in a matter of seconds and I had no way of stopping it...so you know what happened quite often....lol. I could go on forever but I won't. Bottom line is I was 40 when I was diag, however I can track definite symptoms back to my teenage yrs and if I include the "MS Hug" back to age 6 or 7.
I hope this helps to know that you are not alone. Best of luck to you.View Thread
I have suffered with extreme fatigue for many years. I've been on Provigil/Modafinil for about 8 yrs now. Believe me it has made a huge difference in my life. Prior to taking Provigil I would come home from work on Friday night and sleep until Monday morning. I've been on disability for 6 yrs and still would not be able to function without it. If you are exercising and eating right, your neuro should have no problem giving you a script for Modafinil to help with the fatigue. It's all about quality of life!!!
I also had symptoms for 20yrs before being diagnosed with MS. I had lesions on my brain during that period of time which they said were scar tissue from severe migraines. I was also miss diagnosed in 1982 with TIAs. In 1999 on X-mas eve I woke up with numbness in my left arm. By New Years eve I was numb from the chest down. You can imagine that I had no control over anything from the chest down. I had an MRI of the brain and spine. No lesions in the brain but a huge lesion on my spine. Spinal Tap confirmed MS. My Neurologist at that time told me I would never be able to use my left arm again, that was unacceptable to me. Well HE WAS WRONG!! And your GP my be wrong!!! I was in P/T and O/T 2 hrs a day, 3 times a week for 4 months. Today, I do use a cane occasionally and I use my left arm. The only people who can tell I have any residual effects are my Dr., my family and of course me. I have good days and bad days. Push your Dr. for P/T and O/T, get a good MS Specialist and be your own advocate. Kim is right...do your research, join a forum....it does help to talk with others. You have been dealing with this for over 20 years so you are strong.View Thread
The numbness started going away from the chest down. The feeling in my feet were the last to return. Considering my numbness started in my left arm ran down my left side and up the right til it reached my chest how it returned didn't seem that odd. I really think you need a new neuro. who specializes in MS. However, even some who say they specialize aren't always the most knowledgeable. Do your homework. I have had 4 neuro in 14 yrs, 2 were in the same office who I saw for 12yrs. I only switched due to insurance. I now travel an hour to a MS clinic....which I love. I get a complete neuro exam which even with an MS specialist I had never received in the yr and a half I saw him. You can also have nerve damage from MS. Good luck and keep us informed.View Thread
I also had the numbness from the chest down. I was on IV steroids for 5 days. To be honest it took about 4 months for total feeling to return. I was in PT & OT 3 times a week for 2 months. I am not saying this will be the same for you....as others have stated everyone is different. My concern is if your neuro doesn't think its MS has he indicated what he does think it could be? Has he sent you for additional testing or to another dr? I will say that I had a very large lesion on my cervical spine. I hope that if your dr. isn't trying to find out what is going on you will at least do so. Best of luck to you.View Thread
I have suffered and treated for severe frequent migraines since I was 12. I was diag. with RRMS at 40 and started taking Copaxone. After about 6 mos. on Copaxone the migraines became less frequent and eventually I would only have a mild one every 6 mos. My neuro at the time said there wasn't any connection between migraines and MS and the Copaxone couldn't have helped with my migraines. Well I know differently. Especially now that I have had to switch to Avonex....my migraines are back...not as severe but they are definately returning. I think the bottom line is we are learning so much about MS that we really can't rule anything out. I also thank God for this site where we can all share different experiences and make a connection with the symptoms that might otherwise go unnoticed as a part of MS. Case in point....MS Hug....I have had this for years and never knew it was from MS.
I find it interesting that I have only recently heard of the MS hug....I have experienced this for years and never made the connection and even the drs never made the connection. Warm compresses do help as hacker says. You may want to try wearing a sports bra...I tried wearing one about a month ago when the pain was intense and it does help somewhat.View Thread
I went yesterday for my OCT testing to check optical nerve damage. My neuro had suggested this test because some MS patients who have been diagnosed for many years have damage to these nerves. I am happy to say I do not have any damage. However, I was very confused when the technician told me that the Dr. will usually send his patients for the OCT when there will be a treatment change. So confusion sets in again. Well should have some answers..hopefully soon. MRI of cervical and thoracic spine tomorrow and MRI of brain on Saturday.View Thread
I am so very confused right now....I saw a new neuro yesterday after seeing the same one for 10yrs. The new neuro told me my MRIs of the brain from 2009 and 2011 were clear not typical of a person who was diag. 12yrs ago with symptoms of MS dating back 30 yrs. The exascerbation which led to my diag. was from a very large lesion on my spine which led to numbness from the chest down. At that time the MRI of my brain was normal, MRI of spine showed dimylating plaque. I also had a spinal tap which showed the bands were present. I was on solu medrol for 5 days and immediately started on Copaxone. All previous MRI show lesions including an MRI done in 1997, with the exception of the the last 2 which only show 2 small areas. Is it possible to have an MRI of the brain with no new lesions after all these years?View Thread
I do give credit to Copaxone, although my new neuro doesn't have alot of faith in it. Unfortunately, after 12 yrs on Copaxone I had to go off of it due to hives at injection sites. The hives gradually increased in size and I ended up with them every day. I was off treatment for 2 weeks before gradually starting on Avonex. Neuro did mention that the recent MRI's were done in the Open MRI due to claustrophobia, which might explain the lack of new lesions. I am scheduled for MRI's of brain, cervical and thoracic in the closed MRI to see if that shows more lesions. He also mentioned NMO, which is a type of MS that involves the T17 cells. If that is the case my research shows being on Avonex would cause MS symptoms to become worse. Believe me I am very pleased my MRI looks good, and I attribute that to Copaxone! I was treated for migraines from 12yrs to 21 yrs old. Then I was treated for TIA's for 10yrs. Then back to migraine treatment. I was finally diag. with MS. Now after 12 yrs of treatment I am told I may not have MS after all....I am in a whirlwind of emotions. Hopefully after new MRI's, NMO antibody blood tests and OCT testing I will have some idea of what is going on.
Thank you everyone for your responses and I would greatly appreciate any other comments, info, and suggests anyone has for me.View Thread