Anyone here with Multiple Sclerosis?

[Simba's Mom]

Please help me calm down. I went to a neurolgist for a second opinion on my lower back/walking/drop foot issues and he decided I might have MS. Naturally, I'm freaking out here (I admit-I'm easily freaked out-I expected him to say "Yeah, it's just your back). I've done some reading and although I've got some classic symptoms, I don't have fatigue, vision issues, heat problems other than "hate heat". I just returned from WDW, and other than using a cane, I was OK. So what can anyone tell me about my future? Any exercise recommendations? Any websites you'd recommend that have good info?

 

[aaarcher86]

Please help me calm down. I went to a neurolgist for a second opinion on my lower back/walking/drop foot issues and he decided I might have MS. Naturally, I'm freaking out here (I admit-I'm easily freaked out-I expected him to say "Yeah, it's just your back). I've done some reading and although I've got some classic symptoms, I don't have fatigue, vision issues, heat problems other than "hate heat". I just returned from WDW, and other than using a cane, I was OK. So what can anyone tell me about my future? Any exercise recommendations? Any websites you'd recommend that have good info?

The first doctor must not have suggested MS? Sounds like the second didn't diagnose it yet either? I'd just calm down until something actually comes back definitive. Maybe even go for a third opinion if the first two has differing opinions.

 

[Simba's Mom]

Did the first opinion doctor think you had ms too?

No, she's a GP, the "second opinion" was the first neurosurgeon I've seen. She, whom I've been seeing for years, just figured my bulfing discs, sciatica, degenerative disc disease caused all the symptoms. And my only symptoms ARE below the waist, mostly back and legs.

 

[kaytieeldr]

I'm not a doctor, but I did stay at a Holiday Inn Express once. Can you think of anything you might have done lately that might cause the specific problem? A few years back, I tripped over a box at work and ended up limping. After some time, the limp caused drop foot. That caused me to trip over nothing about four times in one week, the last time at the MRI center. Broken leg only, no longlasting illness or condition except clumsiness.

 

[Allison]

Don't get ahead of yourself as it doesn't sound like you actually have a diagnosis. I can't imagine the neurologist just said you might have MS without further recommendation. What does the doctor say should be done next?

I know the person I am close to with MS had to start a regimen of medications and had a lot of testing done including looking for lesions on the brain.

Has the doctor started that process? Again if not, you need to know what the next steps are and go from there.

 

[Apopper74]

MS here. First things first take a deep breath and relax. Couldn't tell you how many times someone has come to me asking questions because a relative saw a doctor and might have MS. None of those situations ever had MS, so let the testing give you the DX. If it is MS, remember it is a life sentence not a death sentence. I was a quick diagnosis because my mother also had it so as soon I had my first symptom I saw a Doctor immediately, within a months time I had all my testing done and got a second opinion from one of the foremost experts on MS at Mt. Sinai in NY.

Within the last 15 yrs there has been so many discoveries and new treatments that really delay as well as improve symptoms. Just do whatever your Dr tells you. Be positive, I was diagnosed 10 yrs ago and I am doing fabulously. I am sensitive to heat and will on occasion suffer from fatigue but endless cups of coffee help. I have never had vision problems. Feel free to PM me with any questions.

 

[Echo queen]

There is a MS message board that you could find out some info on MS. Try not to jump the gun just research It.

 

[Cheryl726]

Is the MS message board on the Dis, or do you mean one on like MS Society? DH has MS, was diagnosed 5 years ago when he was turning 40. It was scary at first because of the unknown, but I do read a lot of articles and have met a few people who also have it. It is definitely a disease where everyone is different. He stopped working last July and that has been difficult, adjusting to him always being home and waiting for disability to come through, which he was approved for this past May.

I hope you all are getting the medical attention you need and try to take one day at a time and think positive.

 

[Simba's Mom]

Update! I went to another neurologist and it turns out I have Spastic Paraplegia. It's somewhat similar to MS, but just limited to my legs-I have no other symptoms. I take Baclofen now, and the good news is that my back doesn't hurt any more! I walk wonky and therefore use a cane. I exercise every day, mostly stretching and balance. I wanted to go to a physical therapist, which they say is useful, but my insurance gave me a hard time, so exercises will have to do for now. Thanks for the info on the MS message boards-I'm going to check there since there is a similarity.

 

[tluvstink]

I was diagnosed with transverse myelitis in 2011 and have been taking Baclofen since then.

It has really helped me and I hope it does the same for you

 

[Echo queen]

Ms world.org

 

[Simba's Mom]

I was diagnosed with transverse myelitis in 2011 and have been taking Baclofen since then.

It has really helped me and I hope it does the same for you

How much do you take? In what way has it helped? So far it's helped me feel a lot better, but I don't walk any better at all. I take about 20-25 mg/day

 

[tluvstink]

How much do you take? In what way has it helped? So far it's helped me feel a lot better, but I don't walk any better at all. I take about 20-25 mg/day

I take 45mg daily and it helps with my spacticity. The biggest difference for me was I no longer have "drop foot" issues but my gait is still off if that makes sense. I can walk and use a cane occasionally. Feel free to ask me anything

Terri