Trouble Walking

Have a question about a symptom, procedure, medication, diagnosis, research, or coping? Ask questions and share what you know with others

Moderator: pmaxwell

Trouble Walking

Postby Debbieducati » Wed Mar 04, 2015 8:24 pm

For the past 1.5 years my legs feel very heavy and hard to move. I have also noticed my gait is off. I am swinging my legs instead of placing them in front of me. I just saw a new Neuro Doc and he did a really good exam. I can not close my eyes with out falling over. I have really bad tremors from by belly up. I slur my words off an on, but much more often. But the leg thing is really bothering me. Before I was diagnosed I was paralyzed from my hips down for three weeks. I have had SM C2 to C7 since 2006. I was told my the new doc that all my symptoms are constant with SM for this long... Any thoughts on this. And Will I be in a chair soon. I do not want that... Having my MRI in two weeks. Are any of you in a chair or need a walker to help. I have been using my grand daughters stroller for the last year off and on. I told the doc this.. I have constant muscle contractions, and electrical firing all day and night now, it never goes away. Not a big deal, but I'm afraid I will not be able to walk any more. Any words on this...
Love to all
Debbieducati
Love to all
Debbieducati
PTSM C5, C6
Debbieducati
 
Posts: 137
Joined: Fri May 18, 2007 10:35 pm

Re: Trouble Walking

Postby pmaxwell » Thu Mar 05, 2015 2:47 pm

Hi Debbie,

Unfortunately nerve damage is often associated with syringomyelia and sometimes Chiari. The loss of proprioceptive (not being able to feel or know where you feet are unless you look at them) is a symptom of SM. It makes walking a lot harder but not impossible. The muscle spams can cause the muscle to tighten up, massage can help with this or medication. Using a wheelchair can sometimes be advantageous but physical therapy or some form of exercise to help prevent muscle loss will help you stay on your feet longer. You need to be careful to prevent falls so using a Philadelphia cane or walker might be a good idea. Not many people are posting on this message board any more but maybe some of your peers will reply with first hand knowledge. Try to stay as active as possible with walking but please use caution.

Hope this helps,

Patricia
Together We Can...
pmaxwell
 
Posts: 152
Joined: Mon Jan 31, 2011 2:20 pm

Re: Trouble Walking

Postby Graybo » Thu Mar 05, 2015 4:01 pm

.
Last edited by Graybo on Fri Mar 06, 2015 9:36 am, edited 1 time in total.
Graybo
 
Posts: 512
Joined: Mon Jun 04, 2007 11:06 am

Re: Trouble Walking

Postby Debbieducati » Thu Mar 05, 2015 7:03 pm

So with only the two responses, I'm not sure how to take this. Two years just about before I was told I had this I was paralyzed for my hips down. I do walk every day. I have 5 grand children and two of them I have 5 days a week from 6 hours to 9 hours a day. One is 6 in first grade and the other is all most 4. So I do not sit. Plus I pick him up from school and the days I have trouble I use a stroller... Not only this I was playing Co-Ed soccer three day a week for 90 minute games. I had great core balance. Everything changed overnight. Did any of you see the show on New York NBC new this morning about the 9 year old boy who had everything we have and was saved by surgery at the Chiari center in LA, California. My husband watched it and said this is YOU. Copy that for your doctors and make sure they all talk to each other. Yes your spinal fluid will make a difference it your nerve damage... All my digestive problems, I have felt for the last 5 years are because of the disruption of spinal fluid.... I do not want to end up in a chair.
Love to all
Debbieducati
Love to all
Debbieducati
PTSM C5, C6
Debbieducati
 
Posts: 137
Joined: Fri May 18, 2007 10:35 pm

Re: Trouble Walking

Postby Debbieducati » Thu Mar 05, 2015 9:38 pm

This on American Syringomelia and Chiari used by me has been the most well renound that I have found.. I have posted a few things in the last few months, which take months to respond, not like before. If you look at some of the posts they far and few between the dates. I need responses sooner... WHAT CAN I DO TO HELP?? I HAVE SM FROM C-2 TO C-7 ONLY... WITH A LOT OF SYMPTOME'S for 11 years., WITH VERY LITTLE HELP STILL, Please lets all keep in touch. This was the best site to help me over all others... I reference this site to my doc's... So get on board.. Please respond... You are just told you have SM or CM. What then... With the way insurance companies work now, it is important to get your facts... The way the U.S. work's... GET YOUR FACTS...
Love to all
Debbieducati
Love to all
Debbieducati
PTSM C5, C6
Debbieducati
 
Posts: 137
Joined: Fri May 18, 2007 10:35 pm

Re: Trouble Walking

Postby syrinx48 » Fri Mar 06, 2015 9:07 am

You have to be patient and wait for the outcome of your new MRI! It will show if you have CM 1 or not. That is what that little boy had. When do you have the MRI and when is your next appointment?

Annemarie
syrinx48
 
Posts: 631
Joined: Thu May 17, 2007 6:24 am
Location: Netherlands

Re: Trouble Walking

Postby taichi » Sun Mar 15, 2015 6:56 pm

I am in the same condition and I'm suer there are many more of us.

































I am in the same condition and I'm sure there are many more. This board helped me in so many-ways especially in the beginning. it made me feel I was not crazy. I have learned how to cope and still learning. I appreciate the-ones that are still here helping others.



barbara














this
taichi
 
Posts: 126
Joined: Tue Jan 05, 2010 6:37 pm
Location: Amory,Ms

Re: Trouble Walking

Postby Debbieducati » Tue Mar 31, 2015 7:45 pm

Well with my last post, I was to have an MRI again. It's now been 9 weeks and the company, I was going through for approval for my insurance messed up so bad with my information I will not have my MRI until next Thursday. My disability sent me my final letter this week for my doctors to fill out. So I am down to the wire on all of everything I have gone through for 11 years. I will let you all know how it goes. California is one of the hardest States to get disability. I am hoping with the gastro, problems on top of not being able to walk, or talk with out sounding like I'm drunk will be a real test of my last 11 years. Please give me hope and thoughts for the next few weeks. I will need it.
Love to all
Debbieducati
Love to all
Debbieducati
PTSM C5, C6
Debbieducati
 
Posts: 137
Joined: Fri May 18, 2007 10:35 pm

Re: Trouble Walking

Postby syrinx48 » Mon Apr 06, 2015 8:15 am

Hi Debby,

Sorry to read about the problems you have had with the insurance! I hope all went well, and that you had your MRI! When are you going to have the results from your MRI? Is that with a NS or neurologist?

Keep us updated!

Annemarie
syrinx48
 
Posts: 631
Joined: Thu May 17, 2007 6:24 am
Location: Netherlands

Re: Trouble Walking

Postby reedy » Thu Apr 09, 2015 7:42 am

Hi Debbie,
So sorry you are having increased problems walking. I am too now! Its a drag. I still get around OK but the times of 'bad walking' are increasing. I'm having a lot of twitching in my legs. I've got SM only and my NS (Dr Heiss at the NIH) says my issues are harder to solve than someone with Chiari (as was mentioned in a post above). But reading this thread reminds me that I really have to keep at it about getting exercise - its not a luxury anymore, its the only way to keep this old jalopy on the road.

I expect I'll be having another surgery fairly soon to see we can slow the decline.

Tonight I have to go on an overnight, 8 hour flight in economy class. I'm not looking forward to it, or the payback in the days following. But 'needs must when the devil rides' as we/they say in Britain.
User avatar
reedy
 
Posts: 334
Joined: Fri Nov 02, 2007 11:37 am
Location: London, UK

Re: Trouble Walking

Postby syrinx48 » Sun May 17, 2015 10:37 am

Hi Debbie,

Just curious about how you are doing. Did you have your MRI, and what was the results?

Annemarie
syrinx48
 
Posts: 631
Joined: Thu May 17, 2007 6:24 am
Location: Netherlands

Re: Trouble Walking

Postby Debbieducati » Mon May 18, 2015 11:05 am

Well my last post was months ago. That is because to find a neurologist here is Central California was very hard. Out of the 30 Doctors on my insurance list only 1 would see me. I do have to say he was good. My exam was over 90 minutes. My MRI took over 3 hours. They did my brain and neck and T-spine. Filling out the Chari- exam paperwork on symptoms helped a lot. My introduction letter for the Doctor prior to our meeting was very helpful. All the new doctors have said this. I did this on my own because my struggle has been on going for over 10 years, with to very rare problems. Syringomyelia and Gastroparesis. The MRI results showed the same results as the first MRI but a little bigger and he called it Syringo/hydromyelia. He gave me propananol very low dose for tremors. It's normally given for high blood pressure. Which I do not have. It helps a little for my hands but not the legs yet. I was told by all three doctors the the constant muscle contractions of my legs and the muscle pain was do to the SM. I have been looking everywhere for anything that will help this. My legs are so week now. the more I walk the worse they get. Any advise on this would help. On another note the New Neurologist was nice enough to fill out my disability paperwork only after two visits. I go to court in August. Please wish me luck. Without my disability I will have to find a job, which will make me very ill again. I just put some of my weight back on. I was 98lbs in November and now 6 months later I am 114lbs. This is big for me. Remember I am 5 feet 7 inches tall. I should weigh more then 130lbs. I will let you know how things go. But any advise on the leg pain burning and constant 24/7 muscle contractions of my legs. Thank you
Love to all
Debbieducati
Love to all
Debbieducati
PTSM C5, C6
Debbieducati
 
Posts: 137
Joined: Fri May 18, 2007 10:35 pm


Return to All About Chiari, Syringomyelia, and Related Disorders

Who is online

Users browsing this forum: No registered users and 11 guests

cron