Spinal vs. brain lesions only

[Devilinside]

So I had my follow up appt with my neuro last Thursday. Decided to start Copaxone (just dx on 6-27-11) so that should be coming along with the home health nurse this week.

Any-hoo. Neuro and I were talking and I told him I decided to start DMD because my spine (SO FAR) is clear and has no lesions......all lesions are on my brain. So we discuss how this would be good to keep it lesion free as long as possible as the spinal lesions are what cause the motor/bladder/bowel, etc. issues. So far, my only MS sx is mild ON.

So, then he tells me that while MOST MS patients have lesions in the brain and spine, some on occassion ONLY have brain and some ONLY have spinal lesions.

Second to my 4 year old son getting MS, my biggest fear is getting motor issues and need a cane/walker/wheelchair later on the life.

So, my question to you guys, is........for those of you who have had MS for a substanial number of years, do you have both spinal and brain lesions, or do any of you out there only have one or the other?????



** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KarenR]

Second to my 4 year old son getting MS, my biggest fear is getting motor issues and need a cane/walker/wheelchair later on the life.

So, my question to you guys, is........for those of you who have had MS for a substanial number of years, do you have both spinal and brain lesions, or do any of you out there only have one or the other?????

Hi Devilinside,

I have had MS for 6 years. I have both brain and spinal lesions.

I have many physical symptoms, manly numbness from the knee down, numb hands, pain and fatigue.

However, my most debilitating and aggravating symptoms are cognitive. Extreme cog-fog, inability to pay attention, no verbal memory, etc.

I grew up with a mom that had a physical disability (polio). So by her example, physical challenges have never deterred me nor prevented me from living my life. She was the strongest woman I knew, who never asked for any accommodations at all. If I'm faced with a physical challenge I just find a new way of doing it and press on.

The cognitive difficulties, however, are a different story. They are very life changing.

So, a cane/walker/wheelchair may not be the worst thing to happen. Loosing memories, stamina, attention, words - that, to me, is far worse. Just my very humble opinion.

Good luck on Copaxone.

Be well,

[Bob698]

I also have lesions only in the brain, I like your optimism.
Just be aware that only brain lesions might not be a picnic. Aside from ON, I deal with some cognitive issues plus weird stuff like auditory hallucinations (its not like I hear voices telling me to do stuff, I hear muffled voices I can't understand when no one's there) and it has made my right side (arm and leg) weaker than the left. There's also stuff like sleep disorders which can be a real hoot and vertigo not to mention fatigue.

[cosake]

I also only have brain lesions. My first symptom that led to diagnosis was ON. Very scary to think that I was going blind or could lost part of my eyesight.

We think another symptom was numbness and tingling in my left hand a few months before diagnosis.

Then, my first real flare was right side weakness in the right leg, foot, arm and hand. I couldn't hand write anything and had a difficult time typing. I also should have been using a cane to walk as I was very "stumbly". I also had fatigue and some cognitive issues during this flare. MRI shows 2 new brain lesions that were found just after the flare.

And the brain lesions could potentially affect any part of your body as it is the "control center" for your entire body.

I think I would rather have a "physical" disability that required a cane, wheelchair, etc. than a cognitive disability or one that affected my vision.

[maximumlite]

I also only have brain lesions and the cog issues can be rough at times and there are people who have made me feel stupid and I use that word as I've been offended by other words used on me and I'm not going to offend anyone here with the hurtfull words used.
Bob I also have the auditory problems, sounds like someone is whispering and some visual things and right away I was diagnosed with disorganized schizophrenia, what a title to be hung on me and also the Bipolar one, how can you have both. They have me taking Invega and it has cleared up those problems, now to just make that loud ringing in my ear go away, Always say phone is ringing and no one is home.
I just wonder will the lesions ever appear on other places in time or will the Rebif prevent that from happening? I've had the brain lesions since 97 and only the number of them has changed over the years.

[isamadjul]

I have was DX in Oct. 2010 and have 7 brain lesions and to many to count spinal lesions. I have 4 kids ages 12,11, 9,8 and they are more then fine with my cane and walker...while I have change a lot in these last months they haven't changed at all. I mean...they still fight as much, still don't help around the house (I'm trying to get home health care right now), they all in all treat me the same...

If it makes you feel any better...or worse...as it does me kids are kids and they look at you as mom and nothing more or less.

oh and I can cog fog, numbness, pain, eye problems, taste bud problems, sleep prroblems...bothways, walking, reading, talking....stutter...memory problems and I think thats it...lol

[Jules A]

As far as MRI can pick up I only have brain lesions at this point but guess what? I also have bladder and rarely bowel issues. I get paresthesia in my limbs at times which is one of the first signs Annette Funnicello had which scares me.

Personally I think we need to come to terms that it is very likely that MS will render us in need of a wheelchair at some point in the future. It terrifies me also but I think it is what it is and having an optimistic attitude only gets you so far when there is a physical disease process taking place.

[Sequoia]

Personally I think we need to come to terms that it is very likely that MS will render us in need of a wheelchair at some point in the future.

According to many reputable sources, 75% of people with MS will never need a wheelchair. Here's just one:

http://www.merckmanuals.com/home/sec...87/ch087b.html

[Jules A]

According to many reputable sources, 75% of people with MS will never need a wheelchair. Here's just one:

http://www.merckmanuals.com/home/sec...87/ch087b.html

When looking at scholarly journal articles the numbers are significantly higher and sadly when it comes to material geared toward patients the level of honesty hasn't always been a priority with information shared by clinicians. The patients in the following study had a mean EDSS of 5.15 at the onset and 8.01 20 years later.

For anyone not familiar with EDSS a score of:
5.0: The person is able to walk 200 meters without aid or rest. Disability impairs full daily activities, such as working a full day without special provisions.

8.0: The person is essentially restricted to bed, a chair or a wheelchair, but may be out of bed much of day. He or she retains self care functions and has generally effective use of arms.


"Mean EDSS score in 1985 was 5.15 (SD 2.7, range 0–9.5) and 8.01 (SD 2.6, range 0–10) in those alive in 2005. Mean
worsening of those patients surviving and with EDSS scores
recorded both in 1985 and 2005 was +3.02 EDSS points Total change in EDSS points for all patients,
including those who died of MS-related causes over the study (n=199), was 573.5 points in 173 patients over a total of 2806.2 patient-years of follow-up, providing a mean change of +4.1 Mean worsening of EDSS scores in surviving patients was +3.02 EDSS points, but 14.0% had worsened by <1 EDSS point over 20 years. 61.4% of patients with EDSS 3.5–5.5 and 82.2% of those with an EDSS of ≤3 in 1985 had an EDSS of ≥6 after 20 years." from Change in disability in patients with multiple sclerosis: a 20-year prospective population-based analysis by Hirst, et al

[Lexie]

I was informally dx 20 years ago when an hour after I went to bed I could not move and was taken to the ER. All I was told that there were "White Spots" in the brain.

I did a yearly MRI for about 6 or 7 years and there was never any chance so I quit doing them because they said there was no cure and no medication. The only problems that were constant were mild weakness in the arms and fatigue at times.

The last couple of years have been a struggle with depression and fatigue. PP changed my anti depressant numerous times. I just related all of this to age (I just turned 61) In October of last year I thought I was having a stroke.

After being hospitalized with three days of testing it was suspected to be the MS. After 6 months of testing I was dx with positive MS. Dr. said "Lots" of white spots in the brain but none in the spinal column.

I have no trouble walking and no leg pain. I have also been dx with sleep apnea.

I began copaxone in June.

I have a hard time finding out who were my real friends during this time. I now tend to put a wall between my co workers and myself. A lot of hurtful things have happened at work when you realize people are just hoping you will leave so they can have your job. (I've been here 33 years and just have two more to go)

MS has forced me to look at life a little differently and appreciate the small things that God has given me. I can always find something positive such as I have lived over 2/3 of my life and am so thankful that my boys are both married and have support systems of their own. AND I have had the greatest husband in the world for 42 years! (Sorry so long)


** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[GandalfRA]

Do not be overconfident on DMDs

I had one big lesion on the spine that left me with a numb right arm and lots of pain in the right chest.

I was diagnosed 7 months after and started Avonex right away. I thought I would stay mono-symptomatic.

After 4 months on Avonex I had another attack. 4 lesions in the brain. I could feel them so I called the Neuro, he had me take a MRI and there they were. I had cog problems, equilibrium problems (started using a cane), nausea, lost interest in everything I liked, lost sex drive.

I was a sad picture of myself and fat as a horse for the bad diet, all the drugs I was taking and the lack of exercise.

Of course I was extremely tired, was depressed big time (I never had this and thought deppression was crying or something). Work was a torment just to going trough the day.

I started the cero gluten, legumes, dairy, red meat and less than 20 grams of saturated fats. Started taking lots of "good" suplements refecomended here.

Started meditation.

Started taking 15 minutes sunbaths

Started going to the gym to weightlift (this is like working out the neuropaths between brain and muscles) and do cardio.

I bougth a like dog to walk in the evenings, a beautiful Pomeranian puppy.

Now I feel much better at work, with my life. Everyday gets better. I stopped using the cane, I squatted today with 100 lbs all the way down for two series of 12, after I was leaning on a cane 6 six weeks before. I am beginning to chase my wife when I see her.

So what I want to say is do not put all your eggs on the drugs basquet. Dieting will not hurt even if doctors say is not necessary.

Of course I am not cured, I still have ants in my head and feel tired sometimes (need a siesta right now), my right arm is still numb and my right chest hurts. But let me tell you how wonderful is to feel better and do things you took for granted before.

[oso49]

good questions

Hi, there. I'm new...so new that I haven't yet received a final diagnosis. I have 11 lesions on my brain but none on the spine and my LP is tomorrow.

I have minor (at this point) "cog-fog", burning and extreme numbness from the ankles down on both sides, minor fatigue that visits each day and daily dizzy spells. But, it is what it is... Anyway....

I'm finding that this is a great place for support... So...question for you...what is "DMD" and "ON"???

Thanks...take care.

[cosake]

oso49 -

Welcome and hope you get your diagnosis soon. This is a great place to be if you have MS.

See the sticky link below for common abbreviations.

http://www.msworld.org/forum/showthr...=abbreviations

DMD = Disease Modifying Drug
ON = Optic Neuritis

[oso49]

thanks!

cosake,

thank you very much for the information...