Status
Not open for further replies.

christymarie

New member
Joined
Apr 18, 2008
Messages
8
Reason
Learn about ALS
Country
US
State
illinois
City
chicago
I'm in the midst of a diagnosis limboland. I have progressive weakness in my left leg and they thought I had MS but all my tests have been fine. MRI's are clear, negative spinal tap, nerve and muscle test within normal limits. My neuro has thrown up his hands and given up. I'm supposed to be going to Loyola in Chicago for a seond oppinion. In talking to other people about similar experiences I was told about PLS. I do not have a diagnosis of PLS and if you wish me to wait until I do to ask questions I completely understand.

One major question of have after reading many of the posts concerns weakness vs spasms. I have occasional muscle cramps but my major presentation is dropping foot and knee weakness producing leg buckling. I'm currently using a walker. I do not have muscle spasms like many of you describe here. I'm just wondering if you have any experience with weakness/cramping but no spasms?

One last question, do you have sensory issues with limbs? Tingling, numbness, or losso f sensation in skin?

Thank you so much for any help you can give me.

Christy
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Christy Im from Peoria Il. i have similar symptoms to yours ,i use a quad cane for mobility , cant take Baclofen ,did take Zanaflex on nothing now . Mine started as speech first . Then the right leg would fold up when i would try and run ,symptoms started in 2000. ive been to over 30 Neuros had 3-4 EMGs 5 MRIs tooo Many tests to mention Clean MRIs Clean EMGs . One of my first Docs. just said well if you get worse come back ,i dont know what i can do ,but Come back . And Welcome to Limbo Geo
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
christy,

How long have you had your symtoms?
 

christymarie

New member
Joined
Apr 18, 2008
Messages
8
Reason
Learn about ALS
Country
US
State
illinois
City
chicago
Thanks for responding

I have had progressively worse symptoms this last month and a half. Basically my left leg has been progressively getting weaker and weaker from the foot traveling up to the knee. Basically my foot drops most of the time and my knee buckles when I do too much. So far it has leveled off and doing PT has helped with some of the muscles in my upper leg, they fatigue really easily.

As I look back, however, I've been having tripping problems since last summer. I just kept atributing them to unseen bumps in floor. So may have had weakness back that far.

Geo, thank you for your post, I have read some of the archives and you are an amazing advocate for this disease. I do not know what I have right now, and I'm realizing I may not know for a long time, but if they do say that it is PLS knowing you are out there striving for more treatments and research means a lot. Thank you.

I so appreciate your input,

Christy
 

MtPockets

Very helpful member
Joined
Jun 1, 2006
Messages
1,528
Reason
PALS
Diagnosis
05/2006
Country
US
State
Ms
City
Gulfport
Welcome to the forum Christy,
You are in the right place to ask questions and seek support from others here who yet do not have a Dx. There are many here in the waiting stages to see what they have. You are not alone.
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
christy,

Did your emg/nvc pick up the nerve damage that is causing the foot drop?
 

christymarie

New member
Joined
Apr 18, 2008
Messages
8
Reason
Learn about ALS
Country
US
State
illinois
City
chicago
No he said they were both fine.

When he was doing the muscle test he told me to push up against his hand. When I would do that the muscle would not respond and then it would kinda jump. He indicated that since it showed good muscle responce when it jumped that that ment the muscle was normal. He told me there was no reason for my foot to not be acting normally and started asking if I was under a lot of stress. I felt like he was sayign, there's nothing wrong with you, get up and walk out of here.

He told me that my responce to this test ment that I was not having neuropathy. It's really very confusing to me. My first appt with him he told me my problems were definately in my head and spine. He based this on hyper reflexes and some test where he ran a sharp pointy thing up my foot and my toes arched outward, not sure what that's about but he said it ment that things were in my spine and back. He also said that he loved puzzles and would figure out what was wrong with me. Well, when the mri's came back normal, the spinal tap was clear, and I didn't respond to the IV steroid treatment he basically said it's in your head go see someone else.

Honestly, if it's in my head I'm totally willing to do what I need to do to get better, but he didn't even tell me what do that in that case. It was almost like he was racing to get me out of the office.

LOL, I guess that was a long responce to a short question Chrystal. I'm pretty sure the dropping foot it from weakness in the muscle not nerve damage. Am I right?

Christy
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Christy. Welcome to the forum and please don't think you need to wait until things are figured out before you ask questions. Like MT said, there are a lot of us around here that are in limbo.

I was wondering what sort of neurologist did your tests? I mean, was this a local guy or did you go to a large teaching hospital, preferrably one that sees a lot of Neuromuscular stuff? The specialists may not have answers any sooner - some of us are just hard to DX - but at least they won't tell you things like there is no reason for your foot to drop so you should stop walking that way. :-D (I know he didn't exactly say that but I thought I'd put my own spin on things, lol.)
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Christy If you want to check the leg for weakness ,stand at a Counter and try to push up to your tip toes
hold that as long as you can .The reason i say this is i have a Muscle contraction thing for my foot drop .
The muscle that makes the foot point down makes the foot point down (it contracts pulling the muscle which in turn pushes the foot to point down) . Alot of folks think since the foot is in a dropped position ,its a weakness of the muscle ,when in all accuality its a contraction of one muscle . When you point your foot down it takes several muscles working together ,one expands or relaxes and one contracts. The Theory of Relativity for each action theres a equal and oposite reaction . Muscles are like rubber bands when one contracts the other exspands . Hope this works Geo
 

crystalkk

Very helpful member
Joined
Sep 11, 2007
Messages
1,210
Reason
Learn about ALS
Country
US
State
pennsylvania
City
philadelphia
Christy,

I would definately get another opinion. His ego is hurt because he couldn't figure it out, and is trying to say it is all in your head.
I can't beleive that he came right out and said it's all in your head.....wouldn't it be nice if that was the case.
 

christymarie

New member
Joined
Apr 18, 2008
Messages
8
Reason
Learn about ALS
Country
US
State
illinois
City
chicago
Thank you all so much for responding...

Cindy, my neuro was a local guy. He is highly recommended in the area but really ended up being a bit of a dud. He wants us to go to Loyola which is a teaching hospital closer to Chicago because that is where he did his residency but we have discovered that University of Chicago is the best neuro teaching hospital in the area so we have decided to bypass Loyola in favor of UIC. Mayo clinic has also been mentioned to us so if UIC can't help we will probably go up there.

Geo that is very interesting, I tried the exercise you mentioned. My foot would go up and then it kinda bounced. Not sure what that's all about. Kinda an up and down shaking. Is that weakness or spasticity? Does knee buckling mean weakness or spasisity (I'm beginning to realize I need to learn how to spell that)? Thanks Geo.

Thanks, Crystal. My husband, I found out later, didn't like the guy from the beginning. I'm fine with it being all in my head, if that is indeed the case, but at least tell me how to get it out of my head so I can walk again. lol. He's young, maybe he'll learn.

Thank you, I'm going now to figure out how to get into UIC

Hugs

Christy
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
Christy My wife Connie says they are Practicing Medicine , Get It, LOL . If you and i did this we would deffinitely be looking for a Job . And i beleive that Bounce is ,the signal from the Brain isnt constant ,like a break in transmission when an action is required . I get this in Morning after waking and trying to stand and go to bathroom i must grab something as my body doesnt know whether to drop or stay upright so i hang on to the counter ,but after a while and being up that goes away ,so i feel like my legs want to try and give out . If you try and understand the Nervous system is an electrical system and the muscles react to the stimuli they get . This is why ilike my TENS / EMS Unit when i had swallowing issues and choking on liquids
i did a Therapy Called Vital Stim Therapy it is where they use a stimulator to stimulate the muscle in my case the neck muscles . but i wasnt making improvements as fast as the Idiot running it . So i had to get off ,then i bought my own Unit . Also great for when the back aches ,do it for an hour and the pain is gone .i get stiff in the lower back and sometimes a little pain with it . Another excersize is to sit in a chair and put your feet up on another chair and pull the top of your foot back toward you .This stretches the calf muscles . make sure you hold it for a bit .When i get really stiff in the legs this feels like heaven . Being the muscles do not get stimulated from the Brain the muscles get tight . Geo If you can push your weight up you have no weakness there or little
 

trying to stay positive

Distinguished member
Joined
Sep 17, 2007
Messages
300
Reason
CALS
Diagnosis
08/2007
Country
US
State
Illinois
City
Chicago area
Uic

Hi Christy, and welcome to the forum. My husband was DX with ALS last August. We go to UIC and see Dr. Kincaid. To schedule an appointment, call 312-996-4780. The contact person is Jessie Alverio. UIC has two ALS clinics each month. On the 2nd Thusday of the month it is MDA sponsored and the 4th Thursday is ALSA sponsored. We like the ALSA social worker, Nicole. The doctors there specialize in neuromuscular diseases and were able to DX my husband when his local neuro couldn't.

Good luck. Let us know what happens and feel free to ask questions. This is a great forum full of wonderful, educated and compassionate people.

Linda
 

christymarie

New member
Joined
Apr 18, 2008
Messages
8
Reason
Learn about ALS
Country
US
State
illinois
City
chicago
Now I'm conflicted, knowing that about UIC makes me want to go there but I spoke with primary care physician today and he recommended three neuro's at Loyola. He indicated that if Loyola was not able to diagnose me I should go to Mayo in Minn.

Maybe I'll see who can get me in sooner. I so appriciate everyone's help with this. You have all been a huge help.

Hugs

Christy
 

Geo

Senior member
Joined
Aug 24, 2007
Messages
500
Reason
DX UMND/PLS
Diagnosis
12/2001
Country
US
State
Florida
City
Ruskin
If you go to Mayo Clinic in Rochester you'll need an appointment in advance ,But we waited as i didnt have one and only waited 2-3 hrs. You can stay at the Hotels in downtown close to the Hospital . Mayo is not cheap ,so keep in mind costs . I was there 2 weeks and my bill was $40,000 ,but they are very thorough
They did accept part of my insurance . I think it ended up 60%/ 40%. I dont know why Mayo doesnt accept alot of Insurances but they dont. They were very nice to us . Geo
 
Status
Not open for further replies.
Top