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MS and confused


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Old 07-08-2018, 12:01 PM   #1
snukki
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MS and confused

Hi,

It's been awhile, but I am very confused. I have MS and have had it for along time, about 22 years. I use a walker because I cannot stand on my own since I lean forward all the time and my left foot drop has gotten worse. I normally am able to walk in my home without the walker. I have started to go to PT and I am finding it is getting worse. I am come home and very tired and I need to use my walker to get around in my home. Is this normal? Or is the PT making me get worse? Should I be going to another PT?

 
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Old 07-08-2018, 03:50 PM   #2
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Re: MS and confused

Hi snukki.

It is very common to be more tired and sore when doing PT which can make getting around challenging initially. After being home for awhile and rest can you get around at what is more normal for you? If not I would discuss this with the PT. It's possible the Physical Therapist is pushing you too much and needs to back off a bit. Do you do your PT exercises at home in between sessions?
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Old 07-09-2018, 02:08 AM   #3
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Re: MS and confused

Hi there. Anytime you start exercise - and PT is a form of exercise- there is a period of time when your body needs to adjust to the extra work you are doing to it. Eventually, like any other form of exercise, you start to get stronger and used to it.

I would talk to your Physical Therapist about how you are feeling post session and see if your therapy needs to be adjusted, but realize that the idea of PT is to get you stronger, so in doing this, you are being pushed to a certain degree. You dont want it to be too easy, or it will not accomplish anything.

You also want to verify that your therapist is familiar with MS and neurological diseases in general. Not all therapists are truly understanding of our disease, they may have unrealistic expectations for you. Have a clear conversation about your goals and make sure they align with the therapist's.

Good luck!
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Old 07-09-2018, 06:54 PM   #4
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Re: MS and confused

Snukki, Yes PT can be painful, BUT not necessarily. Is your Therapist one with MS experience? Thorough stretching can and does help. I know it helped me. When the weather and temperatures change, this can have an impact on some MSers. I have found that there are times when I have to limit my activity based on my abilities that day. The one consistency I maintain is to stretch daily and stay well hydrated.

You might also have a check on your Calcium, Magnesium, potassium, and vitamin D levels. Make your concerns known to the Physical Therapist. I went through rehab last year for a broken ankle and my abilities changed. My physical therapist was new with MSers and afterwards she had over a dozen. She learned well and worked with each of us accordingly.
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Old 07-18-2018, 12:54 PM   #5
snukki
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Re: MS and confused

Thank you for your advise. I went back to PT the other day and asked them who I cannot stand and I wobble all the time and they asked did I talk to my doctor about this? I have e-mailed my doctor about this. It may be the heat or I am getting worse. Any thoughts.

 
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Old 07-19-2018, 02:25 AM   #6
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Re: MS and confused

Snukki. I just noticed that you are in New Jersey. I am also in NJ. This past week has been a terrible week for my symptoms as well. We have had insane humidity here in New Jersey...it affects me horribly. Maybe this is why you are feeling so horribly too?

The weather is supposed to break starting today...hopefully we will both start to feel better!

In the meantime, stay in the a/c- try not to go outside anymore than necessary and if you can - have the car cooled down before you get in it. Drink a ton of water and stay hydrated. Until you hear back from your doctor, that is about all you can do. I feel for you and you are not alone in this. Let us know what the doctor says.

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Old 09-19-2018, 10:03 AM   #7
snukki
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Re: MS and confused

Hi!

Sorry I haven't responded earlier. I seem to be extremely tired and not be able to type. After speaking to my doctor, they have said to continue going the PT. I* use to come home and barely walk. I have STOPPED go to PT and I seem to be getting better but not like I use to be. I use to go to trade shows with my husband on the weekend using a walker now I can barely stand to use the walker. I have SPMS. What happened?

 
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Old 09-20-2018, 02:58 AM   #8
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Re: MS and confused

SPMS means that you are going to have continual progression with your MS...things are not always going to be the same day to day. This may be part of why you can no longer do what you are used to doing.

Did you ever take any meds for your MS diagnosis? Were you initially dx with RRMS? When did things change?

What is your doctor recommending for you? Have you considered trying some swim therapy? It is allot easier on the body than PT!
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Old 09-20-2018, 02:23 PM   #9
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Re: MS and confused

Snukki,
I spent 6 months bedridden due to MS Seizures and several years confined to a power chair. Later I lost the use of my left leg. Each timely MS Specialist told me to keep stretching and had me use a passive exerciser. I was told to allow time for lesions to scar over and- hopefully- have the body rewire and bypass the damage. My last problem was the loss of my left leg. It took me 3 years, but I got 80% use. Many of mine were tied to my T-Spine.

I have PPMS. I do not get a reprieve for being a good boy. I would encourage you to maintain exercise. Stretching will maintain muscle memory. You could awake in the morning and feel yourself again. This is the nature of MS. I spent 3 years with no expectations, but with my MS Specialist's encouragement, I made strides.

I will tell you that you might need to adjust your daily exercise. Some days I can go 45 minutes.....other days 5 minutes. The stretching is not part of the exercise time for me. I have found that I have to listen to my body's signals and know when to stop each time.
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Old 09-21-2018, 08:25 AM   #10
snukki
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Re: MS and confused

Thanks guys,

It is very frustrating not being able to do this things that I can easily do before. Why does exercises not strength my legs any more? it use to. What should I be doing. I keep being forward and not being able to stand? Does this mean I stuck using as scooter or wheel chair? Or is there any exercises I can do? No one seems to tell the me this. Doctors say I should exercise but when I have gone done exercise and that is when this started happening. My doctors never told me SPMS means that you are going to have continual progression with your MS, they just continue to prescribe medication. I though I was going to a good doctor, know as a great MS specialist.

Thank you for all your insight and support

 
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Old 09-21-2018, 03:50 PM   #11
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Re: MS and confused

Hi snukki.

I am sorry you have found yourself in this position.

Quote:
My doctors never told me SPMS means that you are going to have continual progression with your MS
MS is still considered a progressive disease, it is neurodegenerative. This disease causes damage to nerve pathways which results in the signals not getting through. For this reason our body doesn't always do what we want it to, nor does it respond the way we want it to.

Exercise that helps with core strength regardless your disabilities is important. Core strength helps support your entire body. Exercise should be tailored towards your abilities as well as considerations to disabilities.

Exercise is needed to keep your body and mind healthy. exercise can help retrain your brain in it's abilities to compensate for disabilities. Even those in wheelchairs are able to exercise.

Even though you are now Secondary Progressive that does not necessarily mean you will progressively get worse. It is possible for this disease to stabilize. Unfortunately, we have no way to determine where this disease will lead us or the ultimate outcome.

I would encourage you to continue to exercise to the best of your abilities, have faith, and try to remain calm.
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Old 09-21-2018, 09:35 PM   #12
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Re: MS and confused

Snukki,

When your legs are not working, maintaining tone and muscle memory are the main things you can do. When your neural pathways are firing sufficiently, you can walk. However, your muscle cells have to be ready for that moment. My MS Specialist pushed me for 3 years patiently to stretch and use the passive exerciser. She was absolutely correct. When the time came to walk again, my legs were not the same strength, but the muscle tone was still there. If we do not use it, we lose it. My MS Specialist told me that atrophy is something she did not want me to battle. Maintaining the muscle cell memory and tone was the most important thing you can do until your body'd wiring is ready to go again.
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Old 09-23-2018, 09:17 AM   #13
snukki
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Re: MS and confused

I believe exercise seems to have caused me to become unstable in walking. My legs have become very weak to the point I can no longer stand and collapse on the floor. I am afraid to go back to PT. I though my legs would get stronger? I will continue to exercise on my own. I will see my doctor in October and take it from there. Any comments or suggestions let me know.

Thanks

 
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Old 09-23-2018, 05:09 PM   #14
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Re: MS and confused

Snukki,

Your legs will get stronger. As soon as your wires are reconnected and electrical stimuli are moving, your muscles will get stronger. For PT, it is important that your therapist has MS experience or is working with your MS Specialist. The Theracycle is good, but it is really expensive. PT facilities may have these available. These newer models have variable controls that can compensate for weak legs and slowly move from passive to active exercises. Do not give up. Daily stretches are important and moving the legs, regardless of muscle strength or ability, is the key to recovery. I felt like it was a losing effort, but I followed my doctor's directions and it worked! I wish the same for you
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