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Aliss
New Member

Date Joined Jan 2007
Total Posts : 10

Posted 1/5/2007 12:10 PM (GMT -7)

I was diagnosed with MS three years ago. They've traced it as far back as my 15th birthday...I am now 26. BUT, the longer I have it the more sympoms I feel. For example, I've felt fatique the whole way through, but not these ultra heavy arms and legs...it feels almost impossible to get out of my house. Does anyone have any information about this? I am going to see my Neurologist next week, but am kind of worried now. Help?

Denda
Regular Member

Date Joined Jun 2006
Total Posts : 329

Posted 1/5/2007 2:10 PM (GMT -7)

Hi Aliss -

I'm so sorry to hear that you are feeling this way. I'm not officially dx'd, I'm in what does everyone call it here.. Limboland.. right now, had my 2nd lp today and taking it easy. I'm almost to the point of getting my hair cut really, really short since working on it in the morning for more than 5 minutes, my arms feel like they could fall off, they become so heavy. I also have to walk up and down 20 steps to my office everyday, which by the end of the day, I've been up and down them at least 10 - 15 times and my legs are just barely working by the time I'm home. I could run up and down those stairs a year ago. I'm 38 and extremely healthy! I know exactly how you feel and you'll find many others here that l think will agree.

I don't know how to help you, but I'll be happy to be pen pals or just chat here. They have a Monday chat which I have not participated in as of yet, since I feel I don't have alot to offer, but as time goes by, I keep thinking about joining in just for comfort.

I'm curious on how you were able to trace the MS back to your 15th birthday. I've been wondering about the blindness in my right eye and if they could trace it to optic neuritis from childhood. Just wondering...

Hang in there.

I not only use all the brains that I have, but all that I can borrow.
Author: Woodrow Wilson (1856-1924), 28th U.S. President

Kimber
Veteran Member

Date Joined Jun 2005
Total Posts : 1831

Posted 1/5/2007 2:41 PM (GMT -7)

Hi Aliss,

Welcome to the MS forum. I'm sorry you have to experience this at such a young age. Heaviness in the arms and legs is a very common symptom. Some people describe it as having concrete attached to their arms and legs. New symptoms sometimes indicate the start of a flare, so it's good you have an appointment with your neuro to discuss what's going on. Hopefully it will be one of those things that goes away over time, or when your flare is over, but until then rest as much as you can and conserve your energy.

Do you take anything for progression? or anything to help with symptoms? You mentioned fatigue which is also very common. If its rather severe, and you're not taking anything for it presently, there are medications that can help with that issue as well.

Take care, let us know what your doctor says, and I hope you feel better soon.

Kimber

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rhondab
Forum Moderator

Date Joined Mar 2006
Total Posts : 2146

Posted 1/5/2007 3:06 PM (GMT -7)

Hey Aliss

Welcome to the board! I'm so sorry u'r dealing with this. Yes, as Kimber said, heaviness in arms and legs is very common. I've not been dx'd either (Denda) but i can certainly tell u i've dealt with this many times. It comes and goes. It feels as tho u just can't lift u'r legs sometimes or, as Denda said, simple things like doing u'r hair are an complete exertion and just wear u out. Rest as much as u can. That seems to be the one thing i've found that makes any difference in that and fatigue. I imagine u can't rest too much at work since u said u'r up and down stairs often, but what about either moving the files (for example) down to where u are or u'r desk up stairs?? I'm sure there are some accomodations that u'r boss would be willing to examine for the good of u and u'r company. Who wouldn't want to do all they can to help a productive employee?? For now u may just need to collapse on u'r couch each evening until all this gets better. If u'r like many here...it will get better, but no specific time frame on that. Please let us know how u are and how u'r appt goes next week. We've all been thru much or all of this and everyone here is more than willing to help all we can. Ask all the questions u'd like and we'll be here. Again, welcome to the board!

Also, please do feel free to join chat on Mondays! It's always a great way to 'personally' connect with other members and get some real time answers to u'r questions. Denda...u DO have a lot to contribute...so please join in anytime u can.

rhonda

Post Edited (rhondab) : 1/5/2007 3:44:16 PM (GMT-7)

Aliss
New Member

Date Joined Jan 2007
Total Posts : 10

Posted 1/8/2007 9:33 AM (GMT -7)

I'm on permanent disability. My employer couldn't accomodate me so last year, my life as I saw it changed when I had to leave the workforce.

The heavy legs and arms I've been feeling...this is what happened.

I hadn't been feeling good from the 27th of December until probably this last Saturday. Thought maybe the flu (interesting enough, I actually just got my flu shot several days earlier (may have even been a symtom of that) but anyway, Thursday and Friday last, my arms and legs were so weak and heavy I couldn't even get off the couch. To lift my arms, even to hold my plate as I ate, or hold paper in my hand from school work. Writing, brushing my hair, eating! It was as if there was a force pressing down on my arms.

My legs got tired really easily, and when they did, it came on suddenly and I felt like I was going to collapse. Even just to go to the bathroom and back to my resting place, SO difficult. Felt like I was going to fall down. It was crazy scary. I've felt weakness and heaviness before, but not like this!

Amy

rhondab
Forum Moderator

Date Joined Mar 2006
Total Posts : 2146

Posted 1/8/2007 9:58 AM (GMT -7)

Hey Amy

Geez, i'm sorry! Sounds like u'r having a really hard time. When is u'r neuro appt? This is something the doc really needs to know about. I'm sorry about u'r job. I didn't realize u weren't still working. Sometimes employers aren't willing to work with u, but most often they do try as i've heard from others. I can tell u i've felt some heavy weakness in my legs and arms plenty, but not to the degree u speak of. Possibly a new flare. Please let us know when u'r appt is and what happens with it. I pray u'll get past this soon and u'll feel better. Hang on!

rhonda

Aliss
New Member

Date Joined Jan 2007
Total Posts : 10

Posted 1/8/2007 10:13 AM (GMT -7)

I haven't been taking anything for MS progression since February of last year. I started on Rebif when I was first diagnosed, took that for a year. I wasn't taking to it well (be welt in the flesh, bruising REALLY bad, soar, tired legs) so they switched me to Copaxone. I took that for 6 months and the same thing started happening but worse. So they took me off. I am currently taking nothing for progression. (KIMBER)

I had been looking for what was ailing me since I was 15 because when I finished an 8-hour shift at 7-11 my legs would be so soar. I would walk home and my both legs would become completely numb when I reached my house! I was tired all the time and I would get strange tinglings all over. So, I started searching. I went to dr.s for cancer, fibro myalgia and cronic fatigue syndrome, sciatica, arthritis...and every time the test would come up negative. I started getting turned away from Dr.s because they thought I was a hypocondriac. Up until I lost my eye sight in my right eye did they start taking me seriously and from my past experiences, they determined that I had MS since I was 15(DENDA)

Aliss

uppitycats
Veteran Member

Date Joined Jun 2005
Total Posts : 2135

Posted 1/8/2007 3:03 PM (GMT -7)

Sounds like you really need to be talking with your neuro again, and get back on something to slow down the progression. You're very young to be having to deal with this, and you should try to do whatever you can to treat this disease. Sure, the meds have side effects, but -- and I speak from experience here -- the side effects are minor, compared to what can happen with you if you have a major exacerbation!

The heavy legs and fatigue are very common with MS, and unfortunately very hard to treat. There are meds for the fatigue, but they don't work for everyone. The heavy legs is something you might just have to learn to live with.

Good luck with your neuro appointment. Be sure to tell him about this newest flare.

...I am not a doctor, nor health professional, and don't pretend to be one, here.....

Aliss
New Member

Date Joined Jan 2007
Total Posts : 10

Posted 1/11/2007 10:17 AM (GMT -7)

Well, I went to see the Neurologist. He said I am going through an attack. He was going to put me on Prednizone (steroid treatment), but he knows from the last time I was on it (August 2006) I didn't handle it well, so he said this time he's just going to leave it and let it run it's course. If it lasts longer than the end of this month, I should go see him again.

He went over my MRI's from December 19th; I've progressed since '04. He's found several new lesions, so he is putting me on a trial drug...can't remember the name. Since it is a trail, they have to interview me to see if I qualify. If I qualify there are they groups. Ones on the trail drug, one is on a placebo and one is on nothing...(if I remeber correctly).

I won't get a call for the interview until February. From there it will take another month to find out what group I'll be in (drug, placebo or other).

Aliss

Kimber
Veteran Member

Date Joined Jun 2005
Total Posts : 1831

Posted 1/11/2007 4:55 PM (GMT -7)

Hi Aliss,

I'm sorry you are in another flare, and I hope this one ends quickly for you. It's a shame you can't tolerate the injection therapies. Has your doctor ever mentioned trying Tysabri or Novantrone as alternatives? Best of luck with the trial qualification, and keep us updated on your progress.

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Aliss
New Member

Date Joined Jan 2007
Total Posts : 10

Posted 1/22/2007 9:23 AM (GMT -7)

Thanks Kimber. I haven't heard from anyone yet...not sure when to expect it, but I'll keep you informed. Thanks!

Aliss

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