Hello, I'm not sure I should be here

[christymarie]

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]

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]

christy,

How long have you had your symtoms?

[christymarie]

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]

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]

christy,

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

[christymarie]

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]

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]

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]

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]

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]

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]

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]

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]

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

[christymarie]

Geo, were you admitted to the hosp for two weeks or just going in everyday for tests? I have met my out of pocket maximum for our insurance because of all the stuff we have been having to do so we are at 100% coverage for the rest of the year (hubby thrilled). I tried to see if Mayo was in network and it looked like it was as well as St Mary's which looked like it was part of the same complex.

If you take all you tests and films with you when you get up there do they make you re-do them all? I'm not sure we can afford two weeks in a hotel in downtown.

Thanks, Geo, you've given me a lot to think about.

Christy

[Geo]

Here what you'll be doing . First you go to the lobby then go up and sign in . then wait to get called ,then you'll be told to got to a certain flr and room . you'll go up and there will be a nurse or someone at the desk ,you give them your papers .Your first day will be with an internal med Doc. then he'll order tests ,then you'll get more papers ,these will have a room and time . if you want you can go down to the Cafeteria if you have time . Bring your Med records but they will rerun the same tests as they told me ,we cant go by another tests or it may be wrong so we do more . St. Mary,s is a ways away ,they have a shuttle for that .
Theres a little Motel not sure if it was a Hampton Inn or what now ,but it was i sware 100 yrs. old rms tiny ours was so tiny you could get out of bed and by right at the bathroom door ,then step up to the bathroom LOL . They had a little place there to have breakfast before a LONG day of tests . Your going to do alot of walking so be prepared and lots of waiting so take a book if you like to read . I went to a Very nice Speech path lady (Edith Strand ) i did 2 weeks but you may not have that much ?? Also be prepared to hear some person crying because they got very bad news . This Freeked me out didnt know if i could handle that again ?? They wanted me to come back in a year so they could watch me ,they would do it free but i would have to pay for my room . I said why should i if you havent got any way to help me . They were very nice to us though . Geo

[Geo]

I forgot . Tell your current doctor you want copies of all your tests and DO NOT LET THEM SEND THEM. You take them . I went to the hospital where i had alot done and requested my tests results . I had one doctor who refused to give me my records i called the Il. Dept. of Registration and told them, the guy there said Mr. Anderson i'll call you back in a 1/2 hr. and if they dont give you ,your records i will see to it they are shut down permanent . that Doc. office called and said you can pick up your records . so dont worry . Geo

[Geo]

Something Else .Go to www.mayoclinic.org/rochester it will tell you what top bring etc etc .And they have a Marriott Hotel but you dont have to stay there Check theyre Rates . There are others downtown .Geo

[christymarie]

I so appriciate your help, Geo. I found out I can get into a neurologist at Loyola next Wednesday, if he can't help me then it's off to Mayo.

I have copies of all my reports and films so we will take them with us.

Geo, why didn't you go back to Mayo? Who is currently working with you on your PLS?

You guys have been such a huge help.

Christy

[Geo]

Well ,they just want to watch you progress and say yah your progressing . They have no cures they have no answers they just want to look at me like im a specimen .At the time that turned my stomach also i was very bitter and in a stage of not knowing . I came to Florida as the weather is better for us here, in Peoria i would have been stuck in the house all year . And stairs are not good for us which i dont have here . I had a very good Neuro there and came here and found the worst Neuro in the world . This guy took an Application to Bethesda Hosp . Maryland NIH that i gave to him to fill out for me to go to, and he threw it away ,saying he didnt think it was neccessary . He is a MDA Neuro we were going to do a Spinal Tap and he never ordered it so i got it done myself , hes the only thing going in St.Petes for MDA. I have had the worst possible luck with finding a good Neuro ,im currently going to a Spinal and Back Neuro ,an Asian guy who at least treats me like im human. Do you find warm weather is best ? Geo

[mtngirl]

Hey Christy,

Just wanted to let you know that I too am in diagnosis limboland and I know how frustrated you must feel. I am having fatigue/weakness/atrophy in my arms and body-wide fasciculations. My neuro ran all test...all clean except for hyper reflexes. She said "maybe it's your blood sugar" and sent me away.

I am blessed to have a wonderful GP who agreed that she was grasping at straws. Just "practicing medicine" like Geo said...I love it. I have been referred to the University of Colorado Neurology department so I am hoping for some answers at that appt. My GP's opinion is that some younger neuros rely too much on the testing and not enough on what the patient's condition is telling them because they haven't seen much.

Anyway, just wanted to let you know that you are not alone. I have received some wonderful advice and support on this forum so you came to the right place.

Best of luck!

Tracy

[Geo]

Hey Tracey Thats what is called thinking out of the box .This means like the idiot that works on your car only knows what the Trouble codes tell him . A good Mechanic knows more . he knows whats going on besides what that Dumn computor is telling him . Let us call this Gutt instinct or just plain old Thinking out of that stupid box called a Computor . If your not Moving right it has got to be in the Brain .(incoordinatrion ,slurred speech ) .We have to wander what the future holds for a society that needs a Machine to tell him or her what to do .Remember Hal in Space Oddesey 2000 .Hmmmm he was killing all other life on board that ship he was a computor . When you do your job rememeber this . Geo

[mtngirl]

So sad but true Geo...thanks, you gave me a chuckle with the Odyssey thing. But hey, maybe a robot would have better luck diagnosing me...

Good advice about keeping your own records. I learned the hard way. First neuro had to send them to the University so I could get an appt. University never received fax so I called neuro back and she re-faxed. University made note in computer that they received but then someone lost the actual paperwork. So, we are trying a third time, LOL.

Anyway, enjoy that warm weather. Supposed to snow in Colorado tonight...gross.

All the best,

Tracy

[christymarie]

Thanks Geo

Not sure how warm and cold affect me. Since this is all relativley new I haven't been able to discern a pattern. I do not like humidity but that may be due to my extra weight not any motor neuron thing.

I can see that you are not impressed with Mayo, where did you get your dx from, Geo? I'm sorry you're having a hard time finding a good neuro. Do the majority of PLS'ers live in warm climates?

I really do appriciate all the help you have given me, thank you

Christy

[Geo]

Well at Mayo they treated me very nicely and not like i was a piece of meat .But Im not impressed by any Medical professional to date except the one that gave me my Diagnoses in Peoria after i came home from Mayo Rochester and Iowa Clinic . Dr. Greg Bloom in Peoria and one of his associate Doc.s . He was very Compassionate about helping Patients . Nope i lived in Peoria Il. and moved because climate is better for me
here . If you have weight issues ,this on top of having a Rare Disease is not going to help matters ,as i said before i have other health issues as ,we all do besides PLS . But if you decide to ,you can overcome these things .Just like PLS .You can sit in a chair and wait or get up somehow and try and make change . I dont spend all day outside ,i come in every hour and rest ,but beiong in a Warmer Climate has helped me considerably .Otherwise im going to be stuck inside most of the year. Most People who have a Rare Disease are going to get incompetant Care because they do not know how to or want to care for someone who represents a Big Risk to their Profession . As anything they do for us could go bad and theres no Protocol for PLS (NO BOX TO HIDE IN ) Protocol is a treatment for a specific Condition I. E flu or common cold or ear ache . Theres a Protocol for these . Like i said thinking outside the box could be detremental to their Carrier. God Bless Geo