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what is the typical pattern of walking problems with ms
Since I have had a couple of diagnoses of ms and then other docs who say I have to have brain lesisons along with my very positive LP's (23 bands csf only) I am wanting to know how walking problems usually play out with positive ms. I am 57..have been undiagnosed for 4 years with worseing sx. My legs are weaker and walking is becomming more difficult. I can't walk around a large store anymore..this has kind of crept up on me. Severel years ago, I could walk around a store unless I was extememly tired. Now it is most hard to do that. I am better with rest. I find myself looking constantly for a chair to sit in when amongst a group of people and tell people all the time that I have to sit or find a chair. Does this sound like the way it goes with loosing your legs to this disease? I have nothing to compare to?
Thank you for any help you can give me. I have degenerative joint disease and arthritis in my spine. As yet undiagnosed with ms.
Cynde
Thank you for any help you can give me. I have degenerative joint disease and arthritis in my spine. As yet undiagnosed with ms.
Cynde
I barely made it back before the weekend was over. I read through most of your posts to see what else I can say.
You are 57 and have been having symptoms for 4 years. You say they are worsening, but I haven't heard you describe "how" your symptoms appear and what they do when they appear.
Would you say you have distinct attacks, where symptoms fairly suddenly appear or where old ones worsen? If so , about how many of these attacks have you had?
Or - would you say that your problems begin slowly, maybe even subtly, and then just very slowly keep worsening? Do you still have the first problems that you started with?
Or - Have you had something of a combination of both? Do you mainly have symptoms that slowly developed and then kept worsening, but have also had some clear attacks?
All of this is important in determining what criteria the docs would use to diagnose you. If most of your disease is made up of attacks of symptoms which then improve or resolve, then we would be talking about Relapsing Remitting MS, the most common type. About 85% of people will beging with the Relapsing Remitting type. This is the kind that can be slowed down with the Disease Modifying Drugs.
On the other hand, if what you have experienced in those four years is a steady (albeit slow) worsening of symptoms, espeically of motor symptoms like weakness, stiffness, spasticity - then you might be falling into a "progressive" category of MS. If the doctors cannot find a history of attacks or relapses, then the diagnosis is much harder to make.
As I have said before, there is no reason in the world to have another LP done. If this is MS, then the O-Bands would persist life-long. They are there for keeps. You asked what other things in the CSF would suggest MS. There are two other things:
The CSF protein is usually normal or mildly high in MS. If the protein is extremely high, then the doctors would be much more suspicious of a chronic infection in the brain or spinal cord or it's covering (a meningitis or encephalitis).
There is a calculated value called the IgG Index. This is often elevated in MS. The IgG Index is related to the same process that produces the Oligoclonal Banding. This is the increased production of antibodies in the CNS. I think it is likely that your IgG Index is elevated.
Either one of the results - elevated IgG Index or 2 or more O-Bands - is considered a "positive" result. Neither proves MS , but both are considered evidence pointing toward a diagnosis of MS.
In another post you mentioned times when you get a one-sided numbness. Does this occur briefly (less than 24 hours)? or does it happen for days at a time?
Back to your question: Should you go back to the neurologist that talks to you like a human being? That would certainly be my choice, if she seems like she is smart. Is she the one who feels you DO have MS even with the negative MRI? This would indicate she is compassionate AND open-minded a wonderful combination in a physician.
I'm looking forward to a descritpion of the way your symptoms have progressed.
Also, what abnormalities do you have on neurological exam? What are your reflexes like? Do you have any spasticity.
Quix
You are 57 and have been having symptoms for 4 years. You say they are worsening, but I haven't heard you describe "how" your symptoms appear and what they do when they appear.
Would you say you have distinct attacks, where symptoms fairly suddenly appear or where old ones worsen? If so , about how many of these attacks have you had?
Or - would you say that your problems begin slowly, maybe even subtly, and then just very slowly keep worsening? Do you still have the first problems that you started with?
Or - Have you had something of a combination of both? Do you mainly have symptoms that slowly developed and then kept worsening, but have also had some clear attacks?
All of this is important in determining what criteria the docs would use to diagnose you. If most of your disease is made up of attacks of symptoms which then improve or resolve, then we would be talking about Relapsing Remitting MS, the most common type. About 85% of people will beging with the Relapsing Remitting type. This is the kind that can be slowed down with the Disease Modifying Drugs.
On the other hand, if what you have experienced in those four years is a steady (albeit slow) worsening of symptoms, espeically of motor symptoms like weakness, stiffness, spasticity - then you might be falling into a "progressive" category of MS. If the doctors cannot find a history of attacks or relapses, then the diagnosis is much harder to make.
As I have said before, there is no reason in the world to have another LP done. If this is MS, then the O-Bands would persist life-long. They are there for keeps. You asked what other things in the CSF would suggest MS. There are two other things:
The CSF protein is usually normal or mildly high in MS. If the protein is extremely high, then the doctors would be much more suspicious of a chronic infection in the brain or spinal cord or it's covering (a meningitis or encephalitis).
There is a calculated value called the IgG Index. This is often elevated in MS. The IgG Index is related to the same process that produces the Oligoclonal Banding. This is the increased production of antibodies in the CNS. I think it is likely that your IgG Index is elevated.
Either one of the results - elevated IgG Index or 2 or more O-Bands - is considered a "positive" result. Neither proves MS , but both are considered evidence pointing toward a diagnosis of MS.
In another post you mentioned times when you get a one-sided numbness. Does this occur briefly (less than 24 hours)? or does it happen for days at a time?
Back to your question: Should you go back to the neurologist that talks to you like a human being? That would certainly be my choice, if she seems like she is smart. Is she the one who feels you DO have MS even with the negative MRI? This would indicate she is compassionate AND open-minded a wonderful combination in a physician.
I'm looking forward to a descritpion of the way your symptoms have progressed.
Also, what abnormalities do you have on neurological exam? What are your reflexes like? Do you have any spasticity.
Quix
Sorry i am still learning how this site works!
If anyone has any questions about my experiences with MS i am happy to share and talk about it. I had my first symptom in 2000 (optic neuritis) and was diagnosed in 2002 (second symptom, numb fingers) after having MRI scans etc done. The scans show lesions on my brain and spine. I have been on Rebif since 2002 and find that it is quite good, i think it does do something as i have not had many relapses since and the ones i have had are alot more minor. At the moment i am having some problems with balance, it isnt major but i do need to concentrate sometimes not to fall over which is scary. Overall my health is pretty good except getting tired sometimes and the odd minor relapse. Im in a situation where i want to start trying for a baby and are unsure when/how to go off my Rebif. Im waiting for an appointment with a specialist to discuss this. I apparently will need to go off rebif, wait a month, have a chicken pox vaccination, wait a month, have the second vaccination, wait another month and then i can start trying but i wont know for sure until i get an appointment with this specialist, very annoying!!
If anyone has any questions about my experiences with MS i am happy to share and talk about it. I had my first symptom in 2000 (optic neuritis) and was diagnosed in 2002 (second symptom, numb fingers) after having MRI scans etc done. The scans show lesions on my brain and spine. I have been on Rebif since 2002 and find that it is quite good, i think it does do something as i have not had many relapses since and the ones i have had are alot more minor. At the moment i am having some problems with balance, it isnt major but i do need to concentrate sometimes not to fall over which is scary. Overall my health is pretty good except getting tired sometimes and the odd minor relapse. Im in a situation where i want to start trying for a baby and are unsure when/how to go off my Rebif. Im waiting for an appointment with a specialist to discuss this. I apparently will need to go off rebif, wait a month, have a chicken pox vaccination, wait a month, have the second vaccination, wait another month and then i can start trying but i wont know for sure until i get an appointment with this specialist, very annoying!!
Hi Cynde,
You question whether you want to pursue a diagnosis but wouldn't you rather know than have this looming over you as a bigquestion? And don't you want to get treatment if it is something other than MS and can be treated? MS may not be curable, yet, but the DMD's offer great assistance in slowing down the progression of this disease.
As for you friends, you will know when the time is right to talk to them about your concerns and worries. Being more mature (notice I didn't say older!) our circles of friends seem to understand more the importance of emotional support than when we were younger. We don't run from the problems and know our bodies do betray us. I would hope your friends would remain a constant for you whether you need to stand, sit or crawl to enjoy their companionship.
Please stay in touch as you sort through this. My heartfelt best to you, Lulu
You question whether you want to pursue a diagnosis but wouldn't you rather know than have this looming over you as a bigquestion? And don't you want to get treatment if it is something other than MS and can be treated? MS may not be curable, yet, but the DMD's offer great assistance in slowing down the progression of this disease.
As for you friends, you will know when the time is right to talk to them about your concerns and worries. Being more mature (notice I didn't say older!) our circles of friends seem to understand more the importance of emotional support than when we were younger. We don't run from the problems and know our bodies do betray us. I would hope your friends would remain a constant for you whether you need to stand, sit or crawl to enjoy their companionship.
Please stay in touch as you sort through this. My heartfelt best to you, Lulu
Thank you all for chiming in. It helps to know others with ms are having the same difficulty although I am sorry to hear of your troubles. I am feeling like I am 90 years old. My 87 year old mom works circles around me. I used to be up and on my feet constantly. I retired from dental asst because I couldn't stand on my feet very long and had to stay in bed one day for every day worked. It is now 5+ years later and it has progressed slowly but progressed. I am finding it hard to decide how to deal with it in my group of social friends. I find it hard to even stand in the kitchen during get togethers without always needing to sit down. I am scared to death!
I am about tapped out for the evening. I also want to read your other posts. You asked about what you should do. I will try to give my thoughts as you only can decide how important a diagnosis is to you. You also asked about PPMS and I have to see what other info you have given us that might point to that. PPMS can be very hard to diagnose if the MRI is normal.
I'll get back to you this weekend. Okay?
Quix
I'll get back to you this weekend. Okay?
Quix
Thank you for posting on my question about walking. Since I have no diagnoses (except one doctor) I wonder what I should be doing as these new symptoms come up. Since this is an incurable disease..do I just sit by and do nothing or should I pursue a definative dx so I can be on meds? Would the meds help me not get a lot worse? A couple of docs were willing based on my three lumbar punctures..perscribe the meds. I can't really tell when I am having an exaserbation. Since I am 57 do you think it is PPMS? When I take dexidrene(was prescribed for Add years ago) I am able to do so much more. But since I have heart issues (cad) and am on a beta blocker for palpatations..I worry about taking it. I am reallly confused aboout how to proceed.
Thanks for any info or opinions you can give.
Cynde
Thanks for any info or opinions you can give.
Cynde
Hi, Welcome! Would you be willing to Post a new question and tell us your story? I appreciate you jumping in here. The circumstances under which you are feeling unbalanced make me think you are relying heavily on your vision to stay steady. Reading your post, I wonder if you have had prior episodes of vertigo?
Quix
Quix
I have had ms for 6-8yrs and have been fairly lucky not having too many problems but lately i feel more and more unbalanced like i am going to fall over. For some reason this mainly happens in shopping centres and places with shiny floors. Not good, it makes me worry & I hope it goes away!
CYNDE,
WHAT YOU HAVE DESCRIBED SO MANY HERE HAVE RELATED TO.
QUIX'S LIST FITS MANY OF US IN MORE THAN ONE CATAGORY.
I FINALLY COME TO REALITY THAT THE WHEEL CHAIR HERE IN MY FAMILY ROOM IS JUST NOT FOR THROW PILLOWS.
I USE LEG BRACES TO HELP ME STAND,I HAVE A CANE,A WALKER AND A WHEEL CHAIR.
JUST STARTED PT AGAIN AND THEY FEEL THAT ARM CRUTCHES WILL BE OF BETTER USE AT THIS TIME.
THERE'S MANY WALKING AIDES AND SO FORTH AVAILABLE,THE MAIN THING IS TO CONSERVE OUR ENERGY AND TO USE CAUTION AND UNDERSTAND OUR LIMITATIONS WHEN WALKING AND STANDING.
HUGS
T-LYNN
WHAT YOU HAVE DESCRIBED SO MANY HERE HAVE RELATED TO.
QUIX'S LIST FITS MANY OF US IN MORE THAN ONE CATAGORY.
I FINALLY COME TO REALITY THAT THE WHEEL CHAIR HERE IN MY FAMILY ROOM IS JUST NOT FOR THROW PILLOWS.
I USE LEG BRACES TO HELP ME STAND,I HAVE A CANE,A WALKER AND A WHEEL CHAIR.
JUST STARTED PT AGAIN AND THEY FEEL THAT ARM CRUTCHES WILL BE OF BETTER USE AT THIS TIME.
THERE'S MANY WALKING AIDES AND SO FORTH AVAILABLE,THE MAIN THING IS TO CONSERVE OUR ENERGY AND TO USE CAUTION AND UNDERSTAND OUR LIMITATIONS WHEN WALKING AND STANDING.
HUGS
T-LYNN
Q- your list is interesting to me because at any given time I have experienced everything there.... hmmmmm. Lu
Everything you describe shows a pattern that is very common in MS. But because MS can be so varied, there are many gait patterns that show up. Here are several common problems:
Difficulty standing for any length of time
Easy fatigueability with exercise
Wide based, staggering gait (also called ataxic gait)
Foot drop on one or both sides - where the toes drop and catch on the floor causing stumbing.
Stiff-legged "Frankenstein" gait
Swing a leg out and around to bring it forward.
Do these also give you some ideas?
Quix
Difficulty standing for any length of time
Easy fatigueability with exercise
Wide based, staggering gait (also called ataxic gait)
Foot drop on one or both sides - where the toes drop and catch on the floor causing stumbing.
Stiff-legged "Frankenstein" gait
Swing a leg out and around to bring it forward.
Do these also give you some ideas?
Quix
My legs have been weak since my last flare in 2007, and they seem to be getting worse. I'm not sure if they're going to get better! It's something I'm worried about. I'm not getting much input from the neuro, either... sorry i can't be more help!
I am at that point right now. Climbing the stairs in my house is difficult. Good thing I have decent upper body strength.
I have rollator and a cane. I was dx'd in February and have been on Avonex.
My doctor sent me to PT and changed some of my meds. I had my 3rd PT today.
She said my knee strength seems to be a bit better but my hip and ankle strength is worse.
I go back to PT one more time before I see my doctor again. He is trying to figure out if this is a flare, if I need a different MS medication, do I really have RRMS or am I at a different stage now.
Not fun. The rollator and cane have helped with fatigue and balance issues.
LA
I have rollator and a cane. I was dx'd in February and have been on Avonex.
My doctor sent me to PT and changed some of my meds. I had my 3rd PT today.
She said my knee strength seems to be a bit better but my hip and ankle strength is worse.
I go back to PT one more time before I see my doctor again. He is trying to figure out if this is a flare, if I need a different MS medication, do I really have RRMS or am I at a different stage now.
Not fun. The rollator and cane have helped with fatigue and balance issues.
LA
That is funny that you said the kitchen standing is hard. That was one of the first things that I noticed when I first starting having problems.
C
C
Thank you for your posts. I wrote that my bands were 23. I meant to say 12. Just wanted to make that correction because 12 is bad enough lol!
Thank you for you input into my weak legs. With nothing to compare with..and neuros that don't address this problem..I have no idea if this is just one more thing to make the diagnoses more real. I have been waiting to have my brain scan and lumbar puncture done until my dad passed away so now I will go ahead and do this AGAIN! Then I think I am going to go back to my original neuro who I like the best even tho she is not a ms specialist. She is so nice and uncharacteristically caring and she even listens! lol
I hate the drive but if I only need to do this a couple of times a year..it will be worth it.
Hope you are both doing well.
cynde
Thank you for you input into my weak legs. With nothing to compare with..and neuros that don't address this problem..I have no idea if this is just one more thing to make the diagnoses more real. I have been waiting to have my brain scan and lumbar puncture done until my dad passed away so now I will go ahead and do this AGAIN! Then I think I am going to go back to my original neuro who I like the best even tho she is not a ms specialist. She is so nice and uncharacteristically caring and she even listens! lol
I hate the drive but if I only need to do this a couple of times a year..it will be worth it.
Hope you are both doing well.
cynde
Hi Cynde
Sorry to hear about your problems walking. I must admit it sounds very familiar to me. I have had to plan just about everything around knowing where seats, benches, even bus stops with seats in them are located.
I just want to say don't be disheartened, my walking got pretty bad over the last year or so but has definitely improved lately so we are not nesessarily stuck with it.
I hope this makes sense, I suppose what I am trying to say is that what can seem like "losing your legs to this disease" isn't always the case and there can be improvement.
Mand
Sorry to hear about your problems walking. I must admit it sounds very familiar to me. I have had to plan just about everything around knowing where seats, benches, even bus stops with seats in them are located.
I just want to say don't be disheartened, my walking got pretty bad over the last year or so but has definitely improved lately so we are not nesessarily stuck with it.
I hope this makes sense, I suppose what I am trying to say is that what can seem like "losing your legs to this disease" isn't always the case and there can be improvement.
Mand
Cynde,
The walking sure sounds familiar - I find standing in my kitchen absolutely exhausting. I used to love to bake and cook and now it just tires me to stand for more than 30 minutes or so.
Funny you should mention walking in stores - we have those mega-grocery stores and I will go shopping there with my husband. I usually drive when we are going, but ALWAYS have him drive me home, because I am just too worn out from walking in the store. Shopping used to be a fun adventure for me but now it is just an adventure to get through it!
Feel better,
Lulu
The walking sure sounds familiar - I find standing in my kitchen absolutely exhausting. I used to love to bake and cook and now it just tires me to stand for more than 30 minutes or so.
Funny you should mention walking in stores - we have those mega-grocery stores and I will go shopping there with my husband. I usually drive when we are going, but ALWAYS have him drive me home, because I am just too worn out from walking in the store. Shopping used to be a fun adventure for me but now it is just an adventure to get through it!
Feel better,
Lulu
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