Anyone diagnosed with MS?

[tenisha]

Hi. Just wanted to ask if anyone here has been diagnosed with MS (multiple sclerosis). If so, how old are you (if you care to share ) how old were you when the diagnosis was made, and what were your symptoms. Also, what tests were done and how long did it take for a definite answer?

Thanks to all for sharing, in advance.

[Merczilla]

My MIL had it. I know she was diagnosed in her early 40's, but can't give you a specific age, nor what tests were done or how long it took. I think her early onset symptoms were like falling down/leg weakness. She had a progressive form. SOme days were better than others. She'd also had a triple bypass, so there were also heart problems involved ( I think unrelated to MS) She died 12 years ago.

So not much info there. She lived with us for a while, (which is a whole 'nother complicated story) and tried some "interesting" treatments, like bee sting therapy. I'm terrified of bees. lol

[smiles]

My mom's best friend has MS. She was diagnosed around the age of 30. She started having the numbness of limbs, ect. Her's is progressing overall slowly. I know she had lots of tests done to rule out other things like Lyme disesse before she was diagnosed. She has tried many different treatments like vitamin therapy, and different medications. She is still active, and doesn't have to many complication yet. She is 41 now.

My grandma has a cousin with MS that was diagnosed in her late 20's and she has been in a wheel chair for years and can't do much anymore.

[tacatcon]

Not me personally but my godfather. he is now wheelchair bound, has been for some time, but he still manages to run an insurance business with the help of his wife. He is an inspiration to me! They both are actually. She was recently diagnosed with breast cancer, had surgery, chemo, the whole nine yards. Their kids are grown and gone off to NY and they are still maintaining a beautiful home and running a business together. It's a wonder.

I hope that if you are asking for yourself, you are very proactive with your health. I know from reading, that MS can be one of those things that takes a long time to diagnose. Symptoms can be so similar to other diseases/illnesses.

[alarosalpn]

My mom was diagnosed at 40 years old. She is now 56. She was progressing very slowly (which is a good thing). She started off with feeling like one leg/foot was asleep all the time and almost like dragging her foot...She went for MRI's,spinal taps, cat scans,ect. She was put on some medication to slow the progression more. At one point she felt like she didn't have MS. She actually thought she was cured! (That's a whole other story! I Was MAD!) She stopped taking her meds! Well, quickly she went down hill. She ended up having to go for a type of chemo they use for MS. In between treatments she had to have a test called a 'mugascan' because it can cause heart problems. She now gets tired very quickly, falls frequently,her memory is going fast, her strength is poor.
My advice for anyone first diagnosed is stay fit! Stay active. You won't be able to do as much before you tire but don't be stubborn and try either. Take short walks frequently to keep up your endurance. Rest frequently. AND TAKE THE MEDS THE DR GIVES... Talk to the neurologist frequently. If you think something has changed call the dr. Don't wait.
And, most of all,don't go through this alone. There are tons of MS support groups out there. And, there is alot of help through the MS society.
If you have any more questions I will try to answer them.

[neglectarino]

I know 4 people w/ MS, my sister & mom among them. Sis dx late 30s. Mom dx early 40s. Mom uses betaseron (sp?) IIRC to control flareups. My sister did, but didn't like the side effects (plus she's trying to conceive) & stopped which is freaking all of us out. The reason we're concerned about my sister's desire to conceive his her age (now early 40s) & the stress it can have when the pregnancy is already high risk (I had my sons in my very late 30s so I know about this first hand). Definitely discuss this with your doctor.

Recommendations are to avoid stress (like a lot of traveling), stay healthy (a virus or cold can easily trigger a flareup), get plenty of rest, & avoid either extremes in hot old cold temps (sorry, don't recall which is worse & my mom lives in NY near VT & my sis is in GA, so I can't go by where they live). I have read (& have been told) that yoga is particularly beneficial because it is gentle on the body & is a good destressor.

Both my sister & mom are mobile, seem fine, but my mom has had occasions to use a cane because she gets wobbly. It can really mess with your mental reasoning processes, your vision, & your mobility.

Betaseron (I think there are many types or at least many types of MS medications) is designed to make it so you get no worse. In other words, if you are taking it, you will not improve, but the disease's progress is halted & you are where you were after your last pre-medication flareup.

Definitely talk to a doctor about your options. It is not as bleak a prognosis as it used to be. And if you are of child bearing years, my office manager had two children (she was diagnosed in her 20s). And the fourth person is the mom of a very good friend, & in a bizarre coincidence, a friend of my mom's--they went to HS together & got diagnosed around the same time which resparked their friendship. She's mobile & just fine too. Also on betaseron, IIRC.

HTH.

Oh, my mom was dx after a bad winter virus practically immobilized her & totally screwed with her balance & vision (peripheral was shot). She was hospitalized for a month off & on before they came up with that dx. This was in the late 80s. I don't recall exactly what happened w/ my sister, I think it was limb numbness (dx just a few years ago). Neither diagnosed with a spinal, my mom was dx based on symptoms & my sis w/ an MRI.

[JaimeK]

My mom was diagnosed when she was in her late 20's. She remebers her first symtom was not being able to hold a pencil. Those were the days where you still had to write out a letter and send it in the mail. She said she couln't get her hand to work.

After that initial year, my mom was in remission untill about 3 years ago. She takes daily injections now. Other than that, she is getting around great. She just painted the basement last week, ceiling and all!

[tn20]

My dad has MS. He was diagnosed at about 32 years old in 1985, I think (I was about a year old). He's 56 now. He was an enlisted officer in the Army and had to retire early. He first noticed numbness in his hands and having a hard time gripping ropes during training exercises. He was in a wheelchair for awhile, but after physical therapy he started getting around again. He was, I believe, in one of the first groups of people put on Beta Ceron.

He has now been on another drug called Avonex for several years that isn't too widely used. (Its very expensive & few insurances want to cover it- I think it is $1500/wk.) He was a test patient on it and I think he is on a patient review board for the drug. He gets weekly shots and it has done wonders with him!

24 years after being diagnosed and 22 years after being in a wheelchair, he is completely ambulatory (sp). He's more active than most people his age and is doing wonderfully. He loves to travel and is involved in local politics.

His full blown attacks (hospitalization required) are few and far between... I think the last one was about 5 years ago! He has had surgeries to help with his nerves in his arms and legs, which he has very little sensation in. That is probably his biggest issue at this point. A couple of years ago he was outside doing some yard work and cut his leg open pretty bad. He couldn't feel it, so he kept on working and by the time he realized he was bleeding everywhere, he'd lost a good amount of blood. His poor arms and legs are all scarred up from banging them into things and usually not even noticing.

I remember being a teenager and we would have punching contests (don't ask why- I have no clue how this got started)... we would progressively punch each other harder in the arm until one of us cried mercy. I knew I could hit hard, but my dad never flinched and I lost every single time. Then, one day he admitted to me that he always won because he felt nothing but some pressure, no matter how hard I hit. What a cheater!

I've been really amazed at how well my dad is doing. I remember the wheelchair and then the walker, and the hospital visits. Meeting other people with advanced MS as a young child and thinking that my dad was soon going to be like that. But the last 20 years, medicine has come a LONG way in treating MS. Beta Ceron and Avonex really work wonders.

[tenisha]

Thanks to all. I was asking for myself, and have an MRI scheduled for next week. I just had a CT scan two weeks ago. The assistant in radiology that I saw when I went for the CT was the same person I saw again for the MRI (really sweet), and she was like: "Oh yes, I remember you you came in for the CT last week? I knew they were going to send you back for an MRI... how are you feeling?" Then I went to see the neuro and he prescribed LYRICA. I peeked over at his notes on the computer (when he walked out the room) and I saw my diagnosis was MS (and on my referral sheet, that was listed under diagnosis as wel). I asked him what he thought was wrong and he said oh- "maybe a pinched nerve or carpal tunnel (!) or something" (This doc was a Neuro Specialist, not someone I regularly see). I guess maybe he didn't want to say anything yet until maybe after the MRI ? Or maybe let my Primary Care doc "officially" tell me? So, I guess I'm still waiting on a definite diagnosis...

My mobility is limited in my right arm/hand. It aches alot and I get spasms, numbness and tingling (also occurs in legs/feet). The spasms that I get are excruciating. With the last arm spasm my fingers, hand and wrist locked up into a "question mark" shape for a few minutes. I also get blurry/dizzy spells and am off balance at times. The problem aside from that is, I don't think that my family understands that I am really tired and I do feel really crappy most of the time. I put on a brave front all the while my symptoms were getting worse- and I don't let on that I am in pain most of the time when I really am. Everyone kind of just thinks that I can just pop a pill and take a nap and I should be OK, so anything after that is just me "complaining" or "being lazy".

[CouponQueen2609]

Originally Posted by tenisha Thanks to all. I was asking for myself, and have an MRI scheduled for next week. I just had a CT scan two weeks ago. The assistant in radiology that I saw when I went for the CT was the same person I saw again for the MRI (really sweet), and she was like: "Oh yes, I remember you you came in for the CT last week? I knew they were going to send you back for an MRI... how are you feeling?" Then I went to see the neuro and he prescribed LYRICA. I peeked over at his notes on the computer (when he walked out the room) and I saw my diagnosis was MS (and on my referral sheet, that was listed under diagnosis as wel). I asked him what he thought was wrong and he said oh- "maybe a pinched nerve or carpal tunnel (!) or something" (This doc was a Neuro Specialist, not someone I regularly see). I guess maybe he didn't want to say anything yet until maybe after the MRI ? Or maybe let my Primary Care doc "officially" tell me? So, I guess I'm still waiting on a definite diagnosis... My mobility is limited in my right arm/hand. It aches alot and I get spasms, numbness and tingling (also occurs in legs/feet). The spasms that I get are excruciating. With the last arm spasm my fingers, hand and wrist locked up into a "question mark" shape for a few minutes. I also get blurry/dizzy spells and am off balance at times. The problem aside from that is, I don't think that my family understands that I am really tired and I do feel really crappy most of the time. I put on a brave front all the while my symptoms were getting worse- and I don't let on that I am in pain most of the time when I really am. Everyone kind of just thinks that I can just pop a pill and take a nap and I should be OK, so anything after that is just me "complaining" or "being lazy".

WOW! I hear ya! I don't not have MS. However, I do have Charcot Marie Tooth (CMT) which is the same as MS just with the ending.

I have 4 boys under 8 and I get very tired. When I become stressed and tired that is when I have problems. You mentioned the hand cramping into a question mark...That happens to me all the time and it hurts. I have trouble cooking, I have dropped more food on the floor to the point that I prep the food, clean veggies, cut meat and so forth. My husband cooks it for us.

My legs are always off balance and I tend to back up a lot. I always walk into walls. I just laugh and sometimes I even say "Hello wall" if someone is watching. If I was ever accused of being drunk and had to walk a straight line...I'd be arrested for DUI. LOL!

I just take one day at a time. Do not over tire yourself, exercise just enough, but NEVER get tired. That can and will wear on your muscles causing problems. Know when to say yes to some help. Carrying groceries, sweeping or moping floors. All that can wear you out. Be careful not to get around sick people. Stay healthy, two days in bed can reek havoc on your muscles and make them weak from laying in bed.

You can do a lot of things as long as you mind what your doing. Feel free to PM me if you need to chat with someone WHO can relate.

Kimberly