hand clawing and right side muscle weakness

[jc80]

26 yo female.  For the last 3 years I've had progressive hand clawing in my right hand.  I am right handed.  It started in my pinky and has included my ring finger now.  I have decreased muscle mass on my hand,wrist,forearm.  Tried several dr's, many don't know or don't believe me.  Most recent dr noticed decreased strength in my right ankle as well, I cannont flex my right foot for very long or very high.  Other problems maybe related or not: chronic constipation, decreased feeling but not numbness in right finger tips and toes.  Sometimes I feel "cold splashes of water" like a spray bottle of cold water on my legs. Sometimes on front of thighs, sometimes on back. Not pins and needles, but just brief feeling of cold water spray. I have a slight right hand tremor.  I also get leg muscle pain sometimes, and sometimes I have leg problems that are not painful.  I describe that as "walking through water" where its exerting and difficult to walk foward, usually lasts entire day when it happens.

Neurologist says I have hyper-reflexes.  My most troubling problem is the hand weakness and clawing and tremor as I am right handed and interferes w/ my job. He ordered MRI of head and neck that was normal.  EMG was normal.  No family hx of neuro probs except great-grandmother had parkinsons at old age and both her brothers had it at a young age.  Great aunt has MS.  Does anyone have any idea what this could be?

[jc80]

Did he tell you why not pd?  July seems so far away, what tests does he want to do?

[WorriedinAZ]

It is YOPA. Young onset parkinson's association. Google it then go to the "message board." It looks like Mario has already posted there.
The Dr. at the Muhammad Ali clinic runs the MD part and said NO! PD. He said he used to run the Cleveland Clinic and he trained the Dr. who said this may be PD. Yes, he is a bit arrogant!
He wants to do more testing. I'll keep you posted. I go back July 5th for a follow up after further testing.
Please keep me posted too. Good luck and many prayers, Christine

[jc80]

do you have the website to the yopd message board that you mentioned?

Also- you mentioned going to the Muhhamad Ali neuro docs this week... have you gone yet? How did that turn out? I hope they had answers!

[WorriedinAZ]

I totally showed my husband our emails. He is as frustrated as us because he has to live with my weird symptoms daily and he is great enough to attend all the dr. appts.
He, after 2 years, has only seen me limp once and I ask him to watch me walk all the time when I feel like my left leg won't "catch-up."
Anyway, we are still praying it is just fibro. he really just doesn't think this is PD and we are going to the Muhammad ALi neuro's this week for their opinion. They said before it wasn't PD but, now we are bringing the other neuro.'s idea that it maybe young onset to the table.
I think it is but, he just thinks I have weird stuff and fibro. I really just think he is scared because we do have such small children and truely are the "All American" family; this shouldn't be happening to us!!!
Anyway, please keep in touch with me and your progressions/dx's.
Ya'll should go the the "YOPA" message board and post your symptoms. MOst of the people there have YOPD and will respond to you.
They will really help. They have helped me and a few ladies even called me.
Ya'll have a good rest of the weekend, Chris

[jc80]

i think that age plays a large part in our problem.  we are having syptoms that are unusual to people under the age of 55 or whatever.  so we must either be faking or it can't be something serious. because we are too young for something like arthritis or pd or whatever.  i have no idea what my problem is but i know its not normal, i know its not right.  its not how i was 4 years ago. i think dr's are hesitant to dx something w/ such vague, unspecific symptoms.  there are no abnormal lab tests or imgages so they are probably hesitant to go out on a limb and say you have such and such disease or syndrome.  w/ a dx comes treatment and they probably just don't want to risk treating a problem that isn't correct.  which i can sort of understand.  but i hate labelling.  you are young, its not serious. you are a female it must be your hormones. you have fibro you are a whiny faker, etc.  i wonder if we submitted all our symptoms and said we were 60 years old if we would get a dx.

[TooYoungTim]

I don't get it.  Even though everyone has these crazy symptoms, doctors seem to always doubt it is PD.  But then they don't really suggest credible alternatives.  Sometimes they say it could be fibromyalgia, but if not, there's really not many other alternatives other than say, carpel tunnel.  

Even if YOPD is rare, it obviously happens to people.  How come doctors are reluctant  to possibly diagnosis this disease if they can offer so few alternatives to this seemingly probable outcome?  

[WorriedinAZ]

The depression goes with the symptoms for me. It's weird if I wake up foggy and off balance I am more depressed then if I wake up with a stiff left side. This is the strangest disease ever! Whatever it is....
Do ya'll have any  of these autonomic symptoms?....decreased blinking, hypersalivation.
How about feeling like your facial muscles are tightening?
Do your symptoms come and go sometimes from minute to minute?? mine do.
Try to Have a good day, Christine

[worriedmario]

My face sometimes feels tingly or checks feel weird but I think it it because of my less than adequate night guard for teeth grinding. When I close and open my left eye it feels like there it's glued but it still blinks quickly.

My most bothersome symptoms now are the limping and tremor. Also, I am in a lot of muscle and joint pain especially at night. I read that the pain is rare for PD but more common in young onset PD. I'm sure that at some point all these symptoms rotate and hit you. It does seem like the symptoms can stop from in a heart beat at times. But as time goes on they don't seem to leave me anymore, they only get worse. Everyone in my family says I should stop thinking about it and that I don't even know if it's PD. Easier said than done.

[worriedmario]

Also, what did your neuro say about the symptoms you are having now? They do seem reluctant to say the truth. It seems like your symptoms are more advanced because you have had them longer whereas my symptoms started 4 months ago. i forgot to mention that I do get really sleepy during the day at times. Never used to happen, at least not that bad.

Do you guys feel depressed? It seems like the worse the symptoms get it becomes harder emotionally. I feel fine when I'm around my wife but at work I feel down. I keep hoping for a miracle of some sort. I'm still shocked and just bummed out. I feel bad for my wife and everyone around even though I'm the one who is ill.  I can tell that this will take a lot of family support if it is PD. Good luck to everyone

[worriedmario]

I gre up in a rural area and we did some farming with pesticides. The pesticide I think was DDT whih from what I know was nasty and has been banned.
I'm also having other symptoms. I wake up early and can't fall asleep again. Also, unusual constipation. I think my sexual functions have been affected a little, but not sure if it isn't just stress. Overall I feel weird and sometimes my thinking is slowed down. My symptoms get much worse, like my tremor and walking, when I'm under stress.

I feel sorry about you and the kids, but I think that in the end it's a positive. I'm expecting a child and if anything else that brings so much joy in this stressful time. The biggest concern is finances in the future. Here I'm just beginning a career with all these student loans and now I'm not sure what will hapeen next. I know that no matter what my wife is there and will be there. I would love to have more kids once we have this one, but the thought of hardship for my wife with me being ill is a big unknown.

[WorriedinAZ]

That's inspirational. I just saw a young onset specialist who told me to come back in 6 months; if it is worse it is PD if not, then probably just fibromyalgia.

[jc80]

I havn't completley given up on my right hand, i'm just preparing my left hand for the worst.  getting it stronger and more dominant just in case. i do exercise about 3 days a week but go by the rule that if it hurts too much i don't do that particular excersize.  bad pain vs good pain.  

and i'm glad you are only 6 months away from a dx, but six months seems sooooo long.  stupid fibro dx masking everything.  good luck!

[worriedmario]

That sucks. It's similar to what I was told. Do you have any history of toxins, pesticides, etc...? I do and that what has me worried. At our age that is usually the cause as far as I have been able to read.

[WorriedinAZ]

what kind of toxins or pesticides? did you live in a rural area?
are ya'll having any autonomic symptoms? such as: hypersalivation at times dry mouth other times, blurring vision at times, slower blinking sometimes or really delayed thoughts. just feeling like everything is in slow motion?

does you left forearm feel like the muscle is shorter and tight? i feel that in my arm and leg and in my face muscles too. even my left eye ball feels slower to move.

this is all tooooooooo crazy. we are too young. i was a cheerleader, dancer, marathon runner. not to mention, a mom of 2 tiny kids.

i am really scared and this has been going on 2 years and i'm still upset by the crazy symptoms because they are getting worse.

how long have ya'll had symptoms? back to the very beginning...mine started with tingling and restless legs.

i am so praying for a cure; even though, the neuro. the other day said very unlikely a cure for PD.

live life everyday, chris

[worriedmario]

I would again check out the above link and get the dvd from Bill Hillman on exercising. Just because your right hand is getting worse doesn't mean you should overcompensate with the other one because it will lead to further loss of use in the affected one. Bill Hillman is 76 years old and has PD. A few years back his left hand tremor got really bad and he couldn't use his hand. Through his exercising and determination he is back to using that hand with much smaller tremor. Even if you or I don't have PD or something else, it is worth while to do those exerecises. At 76 he does them better than anyone I know in their 20s. Also, keep going to a neurologist who specializes in movement disorders. Nothing else you can really do.

[jc80]

I'm actually incorporating my left hand into a lot of what I do now.  Whether its to control the tremor or to open, turn things that my right hand cannot grasp/do.  Its kind of noticible to people at work. By now, most people know that there is something going on.  My limp is sometimes outward when my hip is bothering me.  Other times its almsot like a stomp?  Sometimes its like I'm dragging my leg a little.  A few people have asked if I broke my hand once, if thats why my fingers are bent.  And sometimes when doing fine motor type things people comment on my tremor.  I'm afraid that someday I won't be able to do my job ( I work in a lab and constantly use my hands).  Until then, there's not much I can do at this point so I'm just trying to "train" my left hand to do things  I normally use the right hand for just in case.

[worriedmario]

I'm curious how is everyone able to handle their jobs? Sometimes I wonder whether to go to work, especially when I walk funny. I guess my symptoms are not noticeable to others. I'll go as long as I can. I'm not used to any disability or anyone looking at me with a disability, especially at 28. That would be the hardest adjustment. I get embarrassed about such things.

Also, to those with the limp in their legs. Does your foot/leg kinda swing outward?

Thanks

[worriedmario]

Hi. it's hard to describe the symptoms as it seems like they keep altering from time tio time, which has me worried about progression. last four days I have been limping more and more. My right leg hurts, especially above the heel, the tendons. It feels like I pulled something but I haven't. Does anyone have that? It's also kinda hard because everyone around you thinks it's all from stress, etc. I have to keep my complaints to a minimum with my wife pregnant. She needs as little stress as possible and when I whine it definitely stresses her out. She think I'm fine and is keeping a positive attitude. She's right, regardless of what the diagnosis might end up being. Strange, but recently I have had friends and heard of others passing away at young age due to other nasty stuff like cancer. A wonderful friend passed away so qucikly I didn't even have a chance to see him. So in a way, there are other more nasty things out there, and we should be thankful for everyday we wake up. If anything these last four months have made me appreciate life so much more than before. I guess the best thing about these things is to make the best of it. I am making myself exercise as much as possible. This link is amust for those with PD or suspecting PD.

http://www.observernews.net/artman/publish/printer_1817.shtml

I read the article and called the gentleman. He was very friendly and mailed me the dvd very quickly. For a 76 PD sufferer he is in GREAT shape. His tips on exercising are the best. I have read a lot about exercise and good nutrition being able to slow down PD. Or in some cases reversing it.

[TooYoungTim]

I appreciate your upbeat attitude regarding this condition.  I have been wallowing in beers and cigarettes for the last couple of weeks trying to cope with the potential inevitabilities.  Having loved ones around you I'm sure helps - but I'm sure it makes it harder in some ways too.  I have been dating a foreign girl for a couple of years and we've seen each other on and off - we plan to marry soon.  But, if I indeed have PD, I plan to break up w/her for her best interest.  Its nice to see that the gentlemen you referred to has found away to fight this and stay positive.  I'm hoping someday I will feel that way too.  Good job though Mario - as long as you fight the best you can, you will have no regrets.  

[TooYoungTim]

Hi Mario, your the first person I've come across who has exact same symptoms as me.  I have it on my left side though.  Ring finger vibrates most, surrounding fingers a little less.  There's a constant pulsating feeling, and my hand remains curled when walking.  I am a 26 y/o male, so, like you, kinda freaked out about the possibilities.  I also have pain in my left forearm.  I think the only thing you can do is wait for symptoms to get worse before anybody gives you the time of day.  Anyways, it would be interesting to see how things progress for us.  

[jc80]

claw hand is when your fingers curl under.  like a bird claw i guess? my pinky ring finger and somewhat my middle finger on my right hand do it.  like i can't straighten them out.  when i force them straight my nuckles (the big ones i don't know what they are called) dip down and the fingers start going up. hard to describe. and when i make as good as a fist that i can make my pinky crosses over the ring finger. Like if i put my hands together as if i were praying my left hand fingers are pretty much up and down but my right hand curls and the finger tips rest about where the last nuckles are (closest to the fingernail) on m y left hand.  my fingertips don't line up tip to tip. its like tip to last nuckle and the middle nuckles are bent and there is a big gap between the middle of the fingers on my left hand and fingers on the right.  

def let me know what u find out cuz we are very similar. i dont get dry mouth.
i do get wicked bad pain where the radius meets the base of the thumb.
i get vertigo but im not worried so much about that its rare and like when i stand up from sitting i think a lot of people get that.  my vision isn't as much blurred as it is double but not double double like one and a half not double... things that are white, i see one and a half of. i can tell which one is real and the other one is transparent.  like white lines in the road.... i see one and a half of them.  ping pong table stripes, i see the one on the table and one that is completly off the table.  white cars look like sheriff cars  that have lights on top.

did they explain why its not parkinson's? i never really thought of that because i'm not really shaky shaky. just a slight tremor in my right hand.

[WorriedinAZ]

YOPD: young onset parkinson's disease. No, not so far. One specialist at the Muhamad Ali PD center said NO WAY but, another YO specialist said 50% chance which my husband went crazy over it, so we saw the guys at Muh. Ali center. Anyway, I have a follow up with the original one on Tues.
What exactly do you mean by "claw." Is it tight and stiff? I get a pain in my shoulder then by my elbow then the last 3 fingers and a very bad pain on my radius bone and my wrist and it feels tight down my forearm and fingers get stiff.
My left leg does the same thing: hip pain, tight thigh (pain), ankle pain, calf stiff and numb and tingling on the outer part, then stiff numb toes (last 3).
I also have vertigo that I forgot to mention earlier.
Sometimes it feels like my head is not getting any Oxygen: I get sooooooo foggy and numb and tight in the face and neck (very painful) , blurred vision, I get bladder spasms and hesitancy from time to time (the neuros. say that is just hormones, but whatever I never had it before). I get a dry mouth and then I will have excess saliva sometimes too and all the stuff I mentioned before....
My symptoms are very weird and I just don't seem to "fit" any one disease except MS but, I don't have any lesions. I do have that slightly positive ANA that has since gone negative but, it is not specific. I went back to the Rheumy last week for 10 tubes of blood so we'll see what they say.
They are starting to rerun stuff on my now.
How long have you had symptoms??
I am only 33 and this is just so bad. We are too young for this ****.
For months I just kept trying to believe the fibro. dx. but, I seem to be progressing. My husband is in denial; he wants it to just be fibro.; well I pray that it is.....keep talking...this really does help. Thanks for your reply, Chris

[jc80]

I do get tingly too. Like not pins and needles but I don't know how to desecribe it. It starts near my elbow and goes back and forth from my hand to my elbow.  its not all the time though. I wonder if your hot and cold spots is the same as what i call the water spray where there are tiny spots in one area but not the whole area of my legs that feel like they are wet. my hand is clawed and weak.

I do get random twitches but its just like my foot will jerk or my arm or leg but not constantly or anything.  what does YOPD stand for, do you have that?

[WorriedinAZ]

forgot to mention my internal tremor feeling i get from time to time. like an internal vibration or motor. do ya'll have that? Chris