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Old 09-09-2012, 03:58 PM   #1
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MS tremors and paralysis

I still don't have a official diagnosis but after seeing 1 orthopedist and 2 neurologist it is becoming clearer that I have MS. My legs are the only body part affected so far and they're shaking so much that it has become very hard to walk even with a cane. My right leg is trembling and my left leg does a movement trying to curl on the inside at every step. I also have severe atrophy on both legs.

My neurologist told me that the test on my right optic nerve shows a deficiency. I wear glasses and my right eye vision suddenly declined 10 years ago but I did not have a double vision at the time so no one suspected MS.

I'm wondering if severe spasm and tremors in the legs with atrophy without affecting the arms can confine someone to a wheelchair eventually. My symptoms have lasted for a year with severe leg pain and the shaking has lasted for 5 months straight and is worsening.
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Old 09-09-2012, 04:18 PM   #2
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Re: MS tremors and paralysis

It can, but so can other things. Have you had an MRI of the brain and spine? VEPs? Did he say you had a pale optic nerve?

The things you said: problems with the legs, problems with the optic nerve can be MS related, but thee is a pathway to diagnosis called the McDonald criteria. You can look it up.

I am sure your neurologist will order more tests. Seems like you are on the right track.

For now, try a walker if a cane is not working for you since your arms are still strong. Also, physical therapy is a great resource. The more you use your legs in MS, the more the connections re-route themselves and the less atrophy you have. Put off a wheelchair as long as you can, but get one if you have to.

Good luck. Let us know how it goes.

 
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Old 09-09-2012, 04:41 PM   #3
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Re: MS tremors and paralysis

Dystonia is also a possibility for your problems if it is not MS. Atrophy is difficult to repair, but you can do it with assistance. When my legs went bad, my neuro had me start using a passive exerciser (Exercycle). The newer version called the Theracycle is excellent, but quite expensive. If you can workout at a physical therapy or rehabilitation facility, they may have such a machine.

Atrophy can be combatted too with the use of plenty of stretching. My neuro told me to keep stretching to help maintain muscle memory. I am now back to walking, though I have had bad days.

If you have Dystonia, some people respond to meds and others have done well with neurosurgery.
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Old 09-09-2012, 05:15 PM   #4
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Re: MS tremors and paralysis

Thanks for the help MsJayhawk

I've had a full lumbar and brain MRI 3 months ago and it showed a few lesions but not quite enough for a diagnostic. I guess they will eventually do another one to confirm MS.

Right now I can walk inside the house using a cane but outside on the pavement it is becoming extremely difficult to move foward so I started looking at mobility scooters and wheelchair. My leg shake so much that I can't drive anymore
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Old 09-09-2012, 05:34 PM   #5
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Re: MS tremors and paralysis

My leg reactions are such that I drive with handcontrols. If your hands work, I would encourage you to get handcontrols.

If you have regular insurance, I would advise you to look at a power chair because it is easier to drive (more maneuverable). If you have Medicare, the rules that are in place will get you very little. Because I can walk, I can only qualify for a manual wheelchair now even though I cannot go very far without my arms becoming exhausted.

My best outdoor mobility is my service dog.

If you have lesions, it requires a minimum of 2 under the Revised McDonald Criteria (there are other tests you also have to go through). Dystonia also has lesions, but they are more specifically located and are different than MS lesions.
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Old 11-07-2012, 10:39 PM   #6
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Re: MS tremors and paralysis

Over the last few months my situation has gotten worse. Both my legs now have severe tremors and spastic movements and muscle atrophy that make it very hard to walk outside even with a cane. I recently started using a wheelchair I rented.

After numerous tests (MRI, visual and sensory evoked potential) my neurologist has yet to make a diagnosis although he suspects MS. According to my last sensory potential test, my physio told me that they noticed a drop in signal to the arms and upper body and I'm starting to have slight spastic movement in the arms and neck.

I'm still waiting for my Lumbar puncture but I'm getting really anxious to get some kind of medication before the spasticity and weakness spreads to my arms.
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Old 11-08-2012, 08:26 AM   #7
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Re: MS tremors and paralysis

Your doctor can give you meds that treat the spasticity, but the meds may or may not work. If you have MS, the meds for MS will not alleviate your symptoms.

From 2002 until at least 2008 I spent over 90% of my waking moments in a power chair. Much of that time my body was able to recover and as I slowly worked my way back to walking, my power chair became my desk chair. If you are looking at mobility scooters, I would avoid them and think power chair due to the ease of indoor mobility. Also, I would encourage some good seating such as ROHO seating because you do not want to have to have any pressure sores.

As to what you can do now. Please start with your doctor about assistance. Some pool therapy might help. My neuro had me get a passive exercise bike (Exercycle). I bought a used on online. The newest version is called a Theracycle and while it is excellent, it is quite expensive too. You might see if a local rehabilitation center has one or the services you need. Things you need to do at home is stretching and more stretching while making sure to remain well hydrated. You need to use the stretching because you want to prevent atrophy and stretching helps to preserve muscle memory.

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Last edited by MSJayhawk; 11-08-2012 at 08:26 AM. Reason: typo

 
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Old 11-08-2012, 07:41 PM   #8
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Re: MS tremors and paralysis

Thanks again for the reply Jayhawk. Last time my neuro told me that he was avoiding giving me medication until all the tests are completed because he was concerned it might weaken my legs further. He also told me that I did not have the typical MS gait since most of the time MS causes the legs to straighten like wooden limbs.

Hopefully the shaking doesn't spread to my upper body ! By the way how much can a good Power wheelchair cost ? I heard that some cost well over 10 000 although I've seen some cheaper ones ? Is it the same price range for the passive exercise bike ?
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Old 11-08-2012, 07:55 PM   #9
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Re: MS tremors and paralysis

My gait has legs which shake. I do not think my legs have ever been stiff. WHen my left leg is really tired, it does not shake nor is it stiff, it just drags. I never like it when a doctor tries to spell out typical and atypical symptom presentation. I guess I hate being "put in a box".

If you have insurance, then the cost of a good power chair is not a concern, but the can cost from $15-35k. If you can walk, Medicare will not cover you. I once qualified for a power chair via Medicare, but they changed the rules and my neuro said all she can get me is a manual power chair even though she knows I need a power chair. I have my favorite chairs, but I will not promote the brands. I would say, however, that quality goes a long way and you should review the chairs ratings. There are many rating firms. Some chairs which are quite expensive have poor service histories and some dealers charge a very high rate for service hours. I had to wait for my chair's warranty to end before I could buy my own parts because the dealer was required to install the parts and while the parts were free, the labor was not.

I bought my first power chair at an online auction. While I will probably do it again if Medicare worsens, now I know which chairs to avoid.

As to the passive bike, I bought mine online for less than $300 including shipping. A new one will set you back from $6-10k. With the added durable medical equipment taxes to be added on, these prices, across the board, will increase.
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Old 11-08-2012, 07:58 PM   #10
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Re: MS tremors and paralysis

BTW, just to add, I would also go and sit in a few chairs at the different dealerships and find one that works for you. My first chair I got when I still had private insurance. The dealer came to my house, measured me, and gave me a demo chair until mine was delivered. While rating chairs is important, you should also get a rating on each dealer because service , when poor or expensive, can make a good chair an undesirable option.
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Old 03-10-2013, 08:13 PM   #11
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I haven't posted in a while but I'm back after going through numerous tests (EMG, brain MRI, Lumbar puncture, Visual VER). After all that my first neuro transferred me to another one in the same clinic that is an MS specialist here in Montreal. I was in his office for about 30 minutes in which he said to me that all of my tests came back negative and that he didn't see anything abnormal in my eyes.

He came to the conclusion that I didn't have any apparent neurological problem and he could not do anything for me. I was really frustrated since he only saw me once and went quickly through my file. I have severe spasms in both legs and I need a wheelchair outside. So after all those tests I'm stuck with no medication and no diagnosis.

I really don't know where to go from here ?
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Old 03-10-2013, 08:22 PM   #12
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Re: MS tremors and paralysis

Mstikes,

Welcome back. I wish you had better news. If you have not yet, please contact the MS Specialist regarding your current problems. At the very least, they could point you to another specialist. I would think that they would give you a ride down the tunnel and take another MRI.
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Old 03-10-2013, 08:53 PM   #13
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Quote:
Originally Posted by MSJayhawk View Post
Mstikes,

Welcome back. I wish you had better news. If you have not yet, please contact the MS Specialist regarding your current problems. At the very least, they could point you to another specialist. I would think that they would give you a ride down the tunnel and take another MRI.
Thanks for the quick reply Jayhawk.

What's really frustrating is that the specialist didn't even request that I take a new MRI or see someone else. Since he didn't see anything on my test results the only thing he concluded is that no specific neurological problem could be detected and that the neuro clinic couldn't do anything more for me !
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Old 03-10-2013, 10:22 PM   #14
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Re: MS tremors and paralysis

Quote:
Originally Posted by Mstikes View Post
Thanks for the quick reply Jayhawk.

What's really frustrating is that the specialist didn't even request that I take a new MRI or see someone else. Since he didn't see anything on my test results the only thing he concluded is that no specific neurological problem could be detected and that the neuro clinic couldn't do anything more for me !
I would see if you can find an advocate within the MS Association there in Canada.
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Old 03-15-2013, 09:48 PM   #15
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I'm seriously considering going accross the border because investigations on my condition seem to have stalled and hit a dead end here. I was thinking going to the Fletcher Allen neurological clinic from the University of Vermont since it's only a 2 hour drive from Montreal.
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