Walking and Spasticity

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.
User avatar
Alainaluvsu
Family Member
Posts: 35
Joined: Fri Apr 11, 2014 9:53 pm
Location: New Orleans, LA

Walking and Spasticity

Post by Alainaluvsu »

Hey guys. I am undiagnosed but my doctor is almost positive I have MS. I have been unable to walk since Monday. It's getting better and I've been able to walk a few steps with some supervision, but if I do my legs get extremely tight and I have BAD spasms. I was prescribed Baclofen for the spasticity. 10 mg isn't enough and 20 mgs knocks me out (fatigue is awful this week). Even my lips spasm if I talk.

Does spasticity after exertion happen often in MS? I hate the way Baclofen makes me feel, is it advisable to take it regularly to get used to it? My sister said it took time to get used to it (she had the same complaints as I did.

And a bonus: how do you deal with the fact you cannot walk? I am extremely scared and I'm only 31 years old and never had any health issues at all in my entire life. I'm having a very tough time psychologically. I've been crying a LOT since Monday, and I just don't have anybody to talk to that can relate.

Please help :(
PointsNorth
Family Elder
Posts: 683
Joined: Mon Sep 04, 2006 2:00 pm
Location: LeftCoast Canada
Contact:

Re: Walking and Spasticity

Post by PointsNorth »

Hello A,

I've tried Clonodine, Zanaflex & Baclofen.
1. None of them worked
2. They all made MS symptoms worse. Eg fatigue

For the last three years have used a sustained-release magnesium which is easy on the bowels and lasts 5+ hours. Best thing I've found thus far.

http://www.jigsawhealth.com/supplements/magnesium

Best of Luck, PN
Albany 2010. Brooklyn 2011
Hayes inspired Calcitriol+D3 2013-2014
Coimbra Protocol 2014-16
DrG B12 Transdermal Spray 2014-16
Progesterone 2015-16
Low-Dose Immunotherapy 2015-16
My Current Regimen http://www.thisisms.com/forum/regimens-f22/topic25634.html
misslux
Family Member
Posts: 37
Joined: Fri Jul 04, 2014 6:26 pm
Location: Canada, eh!

Re: Walking and Spasticity

Post by misslux »

I take 4-aminopyridine and tizanadine/zanaflex. They help a bit with movement spasticity. I did not do well on Baclofen at all and tolerate Tizanadina a lot better.

As far as dealing with things, I guess for me I didn't really have a choice as my mobility decreased quickly. I quickly accepted and moved on but also saw a counsellor/social worker whose patients all have chronic illnesses. I also surrounded myself with positive, but realistic people -- both able-bodied and people with disabilities. Honestly the latter has really helped immensely!

You may wish to reach out to your local MS society to see what groups and resources are available.

Good luck!
User avatar
Alainaluvsu
Family Member
Posts: 35
Joined: Fri Apr 11, 2014 9:53 pm
Location: New Orleans, LA

Re: Walking and Spasticity

Post by Alainaluvsu »

misslux, Thank you.

I've been in the hospital since yesterday, unable to walk. I think my leg strength and spasticity have improved quite a bit. Incontinence seems to come and go. I think I'm slowly urinating on myself as we speak because I feel a growing wetness in my protective underwear.

I did apply for Medicaid and to speak to a social worker who works in the hospital. They've done a CT and reviewed my brain MRI, they said the CT came back negative and they weren't "too impressed" with the VM theory on the MRI. I've had an EEG but haven't heard the results yet. I did not see any flashing lights in my right eye (my weak side and the eye I've been having some pain with). They're going to do a spinal MRI and a lumbar puncture soon. When I made a comment to a resident who has been working with me about the tests indicating that they suspect MS, he point blank said "You'd be wise to think that, I would believe the same thing if I were you".

I've given them so much blood and pee since I've been here and I have no idea what it all was for. It is what it is I guess....
misslux
Family Member
Posts: 37
Joined: Fri Jul 04, 2014 6:26 pm
Location: Canada, eh!

Re: Walking and Spasticity

Post by misslux »

I'm sorry you are going through this.

*IF* it is MS. it sounds like it would be the more common remitting relapsing type which has a high chance of recovery from relapses, especially since you do feel like you are getting better. It of course all sucks though.

Hope you can get some answers soon!
User avatar
Alainaluvsu
Family Member
Posts: 35
Joined: Fri Apr 11, 2014 9:53 pm
Location: New Orleans, LA

Re: Walking and Spasticity

Post by Alainaluvsu »

Thanks sweetie. I hope things are going well for you as well.

My neurologist came in and did some tests. I have patchy loss of sensation in my legs, muscle weakness in my right limbs, in my left eyelid, and in my lips. She did reflexes and told me that since my toes went up instead of down when rubbing my foot with her pen, that I definitely have something going on, probably in the spine. She told me she didn't notice any signs of MS in my brain MRI done in April, and my CT done a couple nights ago was negative. She said she is currently suspecting spinal myelopathy, like a slipped disk or spinal compression. This would have to be a CNS issue since EMG and nerve conduction both came negative.
User avatar
Scott1
Volunteer Moderator
Posts: 1691
Joined: Wed Oct 22, 2008 2:00 pm

Re: Walking and Spasticity

Post by Scott1 »

Hi Alaina,

I'm sorry to read you're having such a rough time. The neurological tests that are being done sound really vanilla procedures. If they determine you have MS then then they will again follow a standard process. That's fine.
If you think they will listen, ask for a uric acid test to see if you are low and fasting amino acid test to see if your non essential amino acids (the ones you make yourself) are also low. If this is the case then there are metabolic issues we can try to help you with. If those two things are low then there will many other items that can be checked and possibly adjusted to help you.

Regards,
User avatar
Alainaluvsu
Family Member
Posts: 35
Joined: Fri Apr 11, 2014 9:53 pm
Location: New Orleans, LA

Re: Walking and Spasticity

Post by Alainaluvsu »

Surprisingly, my B12 was borderline low in serum at near 300 (since I measured near 500 in March and I was very symptomatic then). The neurologist said she had ordered labs to see if I'm actually deficient or not, but doesn't suspect that I am given all of the other labs I've had. On top of that, she said she didn't think the level of B12 wouldn't be deficient enough to cause the severity of symptoms, either. They've taken so much blood from me that I'm surprised I'm not anemic.

They've found something in my lumbar area. She straight up said she's interested in what they found in my brain, but doesn't think it's MS or the vascular malformation that the radiologist thought it was. She does seem to think that the periventricular focus may be causing some of this, though. I'm getting a spinal tap and another brain MRI tomorrow.
Misstazz
Getting to Know You...
Posts: 14
Joined: Sun Jul 20, 2014 3:38 pm

Re: Walking and Spasticity

Post by Misstazz »

Do you have spasms? You say you can't walk, are you stiff? Did they check your Vit D & mag levels? These are usually quite low for MS and other autoimmune syndromes. Beside MS, I also have Stiff Persons Syndrome. That is very rare and few drs are aware of it. The symptoms vary greatly with it. But spasms that respond to Valium is a big help in diagnosing it. Valium is the only things that stops the spasms. Just an idea.
User avatar
Alainaluvsu
Family Member
Posts: 35
Joined: Fri Apr 11, 2014 9:53 pm
Location: New Orleans, LA

Re: Walking and Spasticity

Post by Alainaluvsu »

Interesting. I was having spasms until yesterday, I was given a Valium before an MRI and my spasms were very low, and have been low since. Baclofen doesn't work on them. The spasms are only brought on by putting pressure on my right leg.

IDK if my Vit D levels were tested. I'm guessing yes since I've probably had 30 vials of blood taken since I've been here and the doctors are really searching for an answer (They even gave me an HIV test, despite no evidence showing immunosuppression). Magnesium I asked for as I was low before, but was at 2.3. Potassium they just said was "In the middle of normal range". I don't have all my labs because I have to go to medical records to get them, and I need a walker to walk, and if I walk for a long distance my legs get EXTREMELY sore.

I guess I can ask a nurse to wheel me there, but if a doctor wants to do a test or something I'm sure the doctor would get upset with whoever let me go.

EDIT: At first I couldn't walk because of muscle weakness in my right leg. Now it's balance that's keeping me from walking independently. Also, I just found out this morning that they've been giving me a daily Mg blood test. I'm willing to bet if I'm chronically deficient in that I'd be getting an IV of it.
Misstazz
Getting to Know You...
Posts: 14
Joined: Sun Jul 20, 2014 3:38 pm

Re: Walking and Spasticity

Post by Misstazz »

If you want to know what bld tests they're doing, ask, I would think they would tell you or give you a copy if you request it. It doesn't sound like SPS. Balance can be bad there too. But muscle stiffness or spasms are the main problem. Muscles relaxers don't work well but the Valium will stop or at least help stop them. I hope they figure it out soon....
User avatar
Alainaluvsu
Family Member
Posts: 35
Joined: Fri Apr 11, 2014 9:53 pm
Location: New Orleans, LA

Re: Walking and Spasticity

Post by Alainaluvsu »

They did another MRI on my brain yesterday. The spot they found on my MRI done in April, they are now believing to be a demyelinating lesion. They sent a MED STUDENT IN HERE to tell me this ALONE. He couldn't even tell me if it grew or not. He told me this before my standard sensory, strength, and reflex test, so the entire time I'm pretty much spinning (figuratively of course). Guess the next move is definitely a spinal tap...

Please tell me I'm dreaming. Stupid crap like this only happens in dreams.
User avatar
Scott1
Volunteer Moderator
Posts: 1691
Joined: Wed Oct 22, 2008 2:00 pm

Re: Walking and Spasticity

Post by Scott1 »

Hi,

Can I suggest again that you get a uric acid test done and also fasting amino acid test to see what your non essential amino acids levels are? These tests are like roadmaps that tell us where you are. There are plenty of levels that can be checked but these look at the outcomes of other elements and point to what may be awry.

Regards
User avatar
Alainaluvsu
Family Member
Posts: 35
Joined: Fri Apr 11, 2014 9:53 pm
Location: New Orleans, LA

Re: Walking and Spasticity

Post by Alainaluvsu »

"Clinically Isolated Syndrome"

This is from the MRI (brain) report:

"Findings: There is a faint T2 hyperintensity, T1 hypointensity in the subcortical white matter of the left frontal lobe, with ill-defined enhancement, suspicious of a demyelinating plaque."

I didn't see any any of the essential amino acid tests. Some tests haven't come back yet. She did say she was going to test me for a B12 cellular deficiency and Vit D is still pending as well. It's probably low, but only because I requested it after spending 4 days in a hospital with no time outside. I know people talk about B12 a lot in here and it was borderline low at 285 (200 points lower than last time), but my Folate was at 14.7 ng/ml. I know people here love to see B12 levels in the 550+ range but she said serum levels aren't as important as cellular levels, and they (serum) were a little low for her taste, but that she wouldn't worry much about it without any underlying metabolic issues because without those, they would not be anywhere low enough to cause the severity of symptoms that I am having (sacrilege here, I know).

She is a young neurologist who is VERY knowledgeable about the newest studies. I trust her on a level that I've never trusted another doctor before. I complimented her greatly (something I very rarely do), and she acted like she's heard it quite a few times. She was an undergrad at Berkeley and a graduate of Emory Medical School (#12 in the nation in neurology). I'm kinda sad that she is going to want to focus on epilepsy and not MS in a year (not too sad, my nephew has LGS).

The spinal tap went very well. I felt 1 very sharp pain. However I have a big headache when I sit up now (goes away when I lay down). She said it's common because of the loss of CSF.

So I'm 1 lesion away from a diagnosis. I'm just glad I'm not crazy. They had one hell of a time diagnosing me. I'm just happy to be home!!!
User avatar
lyndacarol
Family Elder
Posts: 3394
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Walking and Spasticity

Post by lyndacarol »

In an effort to be helpful, I offer you these ideas from past postings on the topic:

http://www.thisisms.com/forum/general-d ... c8533.html
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “General Discussion”