Know Multiple Sclerosis

In many cases, the patient knows very little about MS and relies on the learned doctor to speak to the truth.

I just want someone to talk to about my symptoms. I'm having an MRI (brain and spine) done on Thursday. I had blood work done yesterday. I know I'm not crazy or that it is all in my head. The neuro mentioned MS yesterday, but if it isn't MS I don't know what to do next. I want to find out what symptoms other people have.
Please help.

Rhonda,

I know the feeling - not knowing, for me, truly was the worst part. If it is MS, the good news is that there are options. It's not a death sentence. There are a variety of treatments, both traditional and alternative, which have worked well for people. I've had MS for nine years and I take one of the approved treatments. I've been relapse-free for nine years. I'm not saying everyone will do well - I just want people to know that some do.

My initial symptoms were double vision when exercising and numbness (no sensation including hot/cold) on the right side of my body from my ribs down. That lasted about 3 weeks. I had MRIs and the spinal tap done to confirm diagnosis, although that process took many months because my first neurologist was indecisive:). My advice would be to make sure you have a neurologist you trust. If not, the National Multiple Sclerosis Society can refer you to one at 1-800-FIGHT-MS.

Best of luck with everything.

J

My husband started loosing his balance about 3 wks ago. He is now on a walker. He is also experiencing temporary memory loss and speech impirments. This happened after a few episodes that the doctors are saying were not any type of strokes. We aren't sure waht it is, but MS keeps comming up in therapy and doctors visits. Can anyone say that they went from walking and doing the "normal" things to being on a walker with no balance at all in 3 - 4 days? I am stunned by this and am trying to do all I can to help him. Getting more info and understanding what we might be dealing with is key for me.

I was diagnosed on 7-11-07 through MRI's. I have four lesions on my brain, two on my neck and three on my spine. I'm 33 years old and was told in 2001 that I may have had MS. At that time, I had yet to really start my life and could not handle knowing if I had MS. Since the birth of my daughter two years ago, my energy among other things just hasn't been right. I kept thinking it was due to weight gain. Two months ago the bottoms of my feet went numb, then it felt like both feet had fallen asleep constantly. Yet I could still walk normal. Then a tingling/vibration starting rising up my legs and settled in my abdomen. That was a permanent strong vibration. As if someone had rang a bell and how the bell shakes and vibrates that's how if felt/feels. I was admitted into the hospital for IV steroids for five days. I've been out of the hospital for a week and two days, calling my neuro daily to get an appt set up but its vacation season. So I'm out here, tapering down off predisone which is causing severe constipation and insominia. I feel like I'm going crazy. On top of everything, my parents have not been supportive at all. I am on leave w/o pay for the next two months to see how things progress. Then I will either file for disability or go back to work in some compacitity. I'm a probation and parole officer so my job is pretty stressful and confrontational. I do not think it would be in my best interest at this time to return but we'll see. I am engaged to a very loving man with whom we share a two year old daughter. He works a full time job and part time job. So my parents would have to help out very little in the meantime. Besides my folks have ran a successful business so with all their hard work over the years they are not hurting for money. Less than two days of my release from the hospital and as of today my mother has went into great detail about what a burden I am to them. How I'm ruining their retirement. How we are not gonna survive and I best get my symptoms under control and get to work. All I've ever wanted is to raise my daughter. Now that I have diagnosed with a disease, I feel I should have that right. Whether we do w/o other luxuries, I want to be her full time mom. I have always known and cried many nights that I will not get this time back with her. But at the same time I don't want her to resent me later b/c we can't buy her all the fancy things that I'm sure grandma and grandpa will be able to. This just sucks in general. I have been so healthy my whole life, nothing like any of this runs in my family. Heart attacks is about it. I'm afraid this is gonna sort of rob me of my youth with the aches and pains that I shouldn't have to feel until maybe my 40's. All I can do now is pray that my symptoms start going away, my vision becomes clear and that God will help me feel confident about my financial decisions in the future.

My first symptoms were four years ago; the backs of my legs and bottoms of my feet went numb. I was constantly checking in the mirror to see if the back of my pants had ripped, or if something was hanging off me, because if either of those things had happened, I wouldn't have been able to tell.

I entered symptoms on my medical CD-ROM, and narrowed it down to quite a few things. After more narrowing (not diabetic, not end-stage alcoholic, not elderly Jewish man) I came up with MS. Then I went to a GP, who said Guillian-Barre(sp?), and not MS, because, he said, MS is never symmetrical, always has gait problems, always has eye problems, and never hits after age 40. I was 42 at the time.

He was wrong, and three years later a neuro diagnosed, but didn't tell me. His PA started discussing drug treatments with me, but never actually said I had MS, and according to her, the only difference between the drugs is the frequency of injections.

I have a new neuro, who specializes in MS, and am happy with the new choice.

Im 18yrs old and was diagnosed 3/10/06 You guys are going to be okay stay strong and positive god only gives us what we can handle!

Hi. I've had many symptoms for many years, but blew them off due to thinking they were related to other things like caffiene, working night shift, stress, and many other things. It wasn't until I went to see my MD due to strange muscle spasms in my right bicep, difficulty writing, and uncontrollable oscillation of my right hand. The day I went to see him I was hyperreflexic and knew this was a bad sign - by the way I'm a nurse practitioner and make a very bad patient - I expect too much from other providers and ask too many questions. Well to go on, I was referred to a neurologist, had an MRI that states diagnosis of MS, was told I had lesions in my brain and a syrinx in my spine but that was normal and I could start klonopin and that should help. Well klonopin didn't help. With much reluctance I went back to that neurologist and he referred me to USF neuro department, but not after suggesting I was an alcoholic and possibly a drug addict - he didn't say this to me but put it in my medical chart. NO and NO. My next neuro suggested I see a psychiatrist due to possible new onset of panic/anxiety disorder - new to me - takes a lot to ruffle my feathers and I didn't recall having a mental breakdown - maybe it happened in my sleep. I thought what the hell, if it will make my muscles in my legs stop being so spastic and I get my balance back, sure I'll try anything. Went to the psych and saw her for 6 months. She was great, we worked on some relationship issues I had and convinced me to find another neurologist due to clinical and diagnostic findings and that everything else had been ruled out. Well needless to say, my current MRI showed a couple more lesions in my brain, one in my spine and a syrinx, MRI reports states diagnosis of MS but neurologist I see says maybe, it's not clear cut because evoked potential and spinal tap were negative. She doesn't feel comfortable assigning that diagnosis until evoked potential and spinal tap become positive and my symptoms become worse - probably wheelchair bound. I have little to no respect for the neurologists I've encountered. I'm treating my symptoms with Baclofen, Phenobarbital, and Provigil. My current neurologist wanted to see if my muscles were truly spastic and had me taper off my meds - very bad idea - missed work due to my inability to walk and function. Any words of encouragement would be greatly appreciated. I've been in limbo and have become bitter since 2003 with the neuro community. I had to file for bankruptcy due to loss of work for almost a year due to inability walk properly and use my hands - I used to work in labor and delivery. Not a good place to be when you scare the patients by the way you walk. Once again words of encouragement would be great. Thanks, Sharon

Hi Sharon,

good luck to you, have they confirmed the diagnosis yet? MS is not a death sentence, you should try to be proactive, and do anything in your power to stop the progression, first would be finding a neurologist you trust, and then getting on some sort of medicine ASAP, to stop the disease from progressing. Keep us posted on how you are doing?

Sharon, I strongly encourage you to contact the National MS Society. They can help you with labor-related issues and help you know your rights. They can also refer you a good neurologist who specializes in MS in your area. You can reach them at 1-800-FIGHT-MS. Please let me know if there's any info I can provide.

Sharon,

Here is a link to the "Good Docs" List. All of the listings in it have been provided by MS Patients. These are listings of MS Neurologists all over the country that they've had a good experience with.

http://www.clams.org/goodocs.html

Getting off to a good start is very important.

- Ian

You know, I never had a tap done. It was much to obvious from the MRI so they just skipped it. Lucky?

My spinal tap was uncomfortable but not painful. I thought I was going to be in a torture chamber of sorts.

It wasn't fun, but I would rather have another spinal tap than more EMGs on my legs.

At the end you have to lay flat on your back for 24 hours and drink Mt. Dew (the sugar and caffine help replace the spinal fluid). The worst is the headache you get if you stand up for too long.

My name is Dunya and I have been with MS for the past 2 years. I do understand about the MRI. I just had another one done last week. I hate going in there, even though I know it needs to be done. Hope all is well. I am starting to write and sell Ebooks about my "MY MS BLESSING" Check it out if you are interested.

Hope you enjoy!!! Take care and keep up the good work with your site.

You know, I ALWAYS fall asleep in those things. Like a mother's womb to me I suppose. I suppose it's an acquired taste ... like steak tar-tar and kippered herrings.

It is nice that there is MRI now. Unfortunately, it's not very accurate or informative. It's best use is to confirm an MS diagnosis. After that, it's somewhat useless. They are unable to correlate MRI results with clinical symptoms. People with similar MRI results can produce wildly different physical problems. Most of the latest studies suggest that there is damage occuring in what appears to be normal white matter on MRI. This field is growing, but there's a lot of ground still left to make.

Get several copies of your MRIs and other tests on CD! Keep a copy and have an extra one or two for future doctors who will need to follow your progress.

That's a tough one. There are apparently different 'types' of MRI and if your MS is fairly benign, it may not be detected. Even the scars may disappear so your next MRI will be clean. Of course, there is always the spinal tap ... ugh. Just getting to a point where you get an MRI or a referral to a neurologist can take years. I went down that path. My primary physician was certain of many things and finally referred me to a Osteopathic Doctor who thought it might be spine compression and sent me for an mri on the same day ... and there it was as plain as day - a foggy, dimly lit one. Just 2 spots in the brain and 1 in the spine. I could not see it on the mri, but he could and had a look like he was going to tell me I had 1 week to live. I felt worse for him than myself! I finally KNEW!

I think I have ms 10 years ago I was told I had fibromyalgia and since and over the years I would have one or two bad spells a year but in the last 3 years I have been getting new symptoms along with lasting effects.I have had hearing test and seen a heart specialist and now they want to do a balance test.Who should I talk to the ears nose and throat doctor ot the heart specialist?I just want to get to the neurologist without being to pushy.Sometimes I feel so alone and people look at me different when I loose balance or my speech is off or my memory is screwed up.I used to be a very with it person.Does any one know what I should do next.

If I suspected multiple sclerosis, I would consult a neurologist. I called the National MS Society at 1-800-FIGHT-MS and they were able to refer me to a neurologist in my area who specializes in multiple sclerosis. If it turns out to be MS, it's better to find out sooner than later since there are drugs available which have been proven to slow the disease.

I completely agree about getting a second opinion. It made me feel more sure when I got my 2nd opinion, and it took away many doubts about "maybe it's something else".
And definately find a neurologist that you can trust and feel comfortable talking to. Not all neurologists are created equal! If you have one that only pushes one drug, or dismisses your symptoms, then it's time to go doctor hunting. If at all possible find an MS clinic - those neuros have much more experience with the latest MS treatments. That being said, there are some MS specialists who aren't very personable either! Sometimes you have to look for a while to find someone good :)

I was diagnosed with MS in November. I would like to get a second opinion and am willing to go anywhere to be seen by a good doctor. Has anyone had any experience with the Mayo Clinic in Arizona for MS treatment?

I WAS DX WITH MS WHEN I HAD A ONE YEAR GOAL TO BE AN ATTORNEY/JUDGE.
A HUGE MEDICAL CENTER TOOK TO BIOPSIES OF MY THIGHS AND SAID I DEFINETLY HAD MS., IT DID NOT DISTRUB ME UNTIL THEIR WAS A DAY I COULD NOT MORE ONE OF MY LEGS!
RECENTLY, I WAS IN A CAR ACCIDENT AND THAN I HAD TO HAVE A COLONOSKY*mis spelled)THE DOCTOR SAID THE TEST WAS VERY CLOUDY AND ASKED ME IF I WANTED TO TAKE IT OVER. EVEN, AS HE SAID AT THE TIME THAT MY CENTRAL NERVOUS SYSTEM WAS VERY BAD. I THOUGHT BECAUSE OF THE ACCIDENT BUT, IT WAS NOT!!! THE CAR ACCIDENT SCRAMBLED THE IMMUNE SYSTEM TO BECOME A ACTIVE MS PERSON. NOW, THE MAIN REASON I DID GO TO THIS DR. BECAUSE I STARTED WEARING A PAD TO BED BECAUSE I NOTICED WHEN I GOT UP IN THE AM, SOME STOOL WAS ON THE PAD!!!
SO, I SPOKEN TO THE BACK SURGEON THAT WAS SUPPOSE TO DUE MY BACK SURGERY; DUE TO THE ACCIDENT-- HE TOLD ME TO SEE THIS DOCTOR FIRST.
I THOUGHT NOTHING OF IT UNTIL, THIS DOCTOR SAID TO ME LOOKING AT MY FOLDER THAT IN WAS INEVNAL THAT LUPUS AND MS WOULD MAKEE ME LOOSE BODILY FUNCTIONS.
I WENT NUTS, CRYING--SAYING I HAVE ONE YEAR TO BE AN ATTORNEY AND 2 MORE YEARS TO BE A JUDGE.
I CRYED SO HARD, THE INTERN WITH HIM GOT ME A PAPER TOWEL. I GRABED THE DOCTORS HAND AND SAID AS HE LOOKED IN THE FOLDER. DID YOU KNOW THAT I HAVE A FUTURE IN LAW????? HE SAID I AM SO SORRY, YOU ARE GOING TO GET WORSE. I SAID WHAT???????/
SO, I WAS CRYING HEADING OUT THE DOOR:HE SAID DO YOU WANT TO TAKE THE TEST AGAN?? I SAID IS THE CONCLUSION GOING TO BE THE SAME AND HE SAID YES.
SO, I SAID WHY PUT ME THRU THAT??
MY CAREGIVER THAT HELPS ME HEARD HIM SAY TO THE RECEPTIONIST.
DO NOT GIVE HER ANYMORE APPOINTMENT!!!!!
I HAVE NOT BEEN THE SAME SINCE.
ALSO I WONDER IF THEY WILL STILL DO THE BACK OPERATION, BECAUSE I HURT MY BACK SO BAD!!
PRAY FOR ME MICKEY