First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.
The symptoms that you describe are non-specific and you have had some good tests already to evaluate for the most obvious potential causes. Several diseases/categories that I did not see represented are seizures/epilepsy, vasculitis and Wilson's disease.
There is a category of epilepsy called Rasmussen's encephalitis that is more common in children, but can have adult onset as well. This disorder causes focal seizures that affect one side of the body and at first the symptoms can be strange with twitches/tremor, weakness, and sensation changes that can evolve into more recognizable seizures, speech problems and problems thinking/memory. In the later stages this condition will show up on the MRI and white matter changes afecting one side only and atrophy of one side of the brain (the left in your case would give you right body symptoms), but early on in the disease the MRI is often interpreted as normal. I would suggest an EEG of the brain (brain wave test) to look for seizure activity that is sleep deprived (to make sure you sleep during part of the test-this makes the test more sensitive).
Another possibility is vasculitis (or inflammation of the blood vessels in the brain). This could be caused by many different things, and we often do not find a cause. Many patients with advanced vasculitis have strokes that show up on their MRI, but it may be negative early on. To look for vasculitis a cerebral angiogram should be done (it is like a heart cath, but they will squirt dye into the arteries of your brain to look for narrowing, etc).
Finally Wilson's disease is a disorder of Copper metabolism that allows copper to build up in many different organs, including the brain. These patients often present with depression/psych disturbances and are found to have tremor and ataxia. Testing for this rare disorder involves a simple blood test for ceruloplasmin and copper as well as liver function tests.
It is very frusterating to patients with disabling problems to go through many tests and have them come back 'normal'. Many times after you have exhausted the tests that your doctor knows or cares to order, it is time to go to major academic center and to have your case reviewed by an expert in the field that can provide further guidance.
I hope this has been helpful.
I'm sorry about your problems. The most frustrating thing is not finding doctors who believe and are willing to investigate with you. I have been investigating sympotoms of my 14 y.o. daughter with muscle weakness. It has led me to the muscular dystrophy site (www. mda.com, I think). Check out the section about metabolic diseases of the muscles. Many times, tests will be normal---even EMGs.
The important thing to remember: just because a dr. discounts you or doesnt know an answer, does not mean nothing is wrong; it means they don't know the answer or the symptoms. You must be your own advocate. Good luck!!
I agree with the other response to you got. Its important to be your own advocate and not give up. I am a registered OT but not a Dr, you sound like you have a nerve innervation problem that may be causing your right hand weakness, clawing (what you describe is consistent with one nerve pathway, your ulna nerve). If its inteferring with your job, its a problem, whether they can find a reason for it or not. Have they checked carpal tunnel in your right hand? You could try some form of splinting to help with your hand, its not useful if its claw-ing and you will eventually form contractures if its left for many years. You would have to be assessed by a hand therapist for any useful form of splinting to occur.
From a diagnosis standpoint - its certainly odd what you describe, however do not take a normal MRI to necessarily mean just that. In my experience sometimes things are missed, it happened to me last year. A pineal gland tumor was seen on CAT scan and not reported, brain MRI was reported as clear but I had no contrast, then when my symptoms worsened, they did a repeat MRI again no contrast, they saw the tumor and it was reported, then they did a recheck of me and added contrast to the MRI, 6mths later and once again they saw the tumor (not grown thankfully) but with the contrast they also saw that one of my carotid arteries (fairly essential for good brain function :-) was twisted. My EMGs have also been normal, but I have definitive heart, lung and adrenal disease, that has shown in bloodwork and formal testing. For a time I had some what I called a sensation of cold air conditioning on my scalp and when my adrenals are really bad, I seem to walk through mud, its hard to walk and stay upright and I am completely and utterly fatigued.
Have you seen a rheumatologist? They are often good at tracking down other reasons like Lupus or immunological probs that can cause things like you describe. You could also request a muscle biopsy and make sure they take a really good look at your bloodwork. The rheumatologist I saw was helpful but did not come up with anything new ideas, but one Dr did wonder if I had inclusion body myositis (there is a milder version called polymyositis) from the history and the test results he reviewed, which you may want to look up. I have so far refused a muscle biopsy, its only useful really if you have acute symptoms, but bloodwork for muscle enzyme levels can help establish if its a useful idea or not. If they are elevated (mine were but then dropped back to normal) by the time a muscle biopsy was suggested. I am seeking my third opinion in NY in two wks time and its 17mths since my acute symptoms.
I hope that helps, and please don't give up, its miserable when you have no answers and are suffering.
GL and maybe those are some new ideas to consider.
With muscular dystrophy, I was under the impression that it is something that primarily affects males and starts at a very very young age. Are there varieties that can affect women in their second decade of life? Thanks for your input and good luck to your daughter.
Thanks for your comments. I have seen a Rheumy who diagnosed me w/ fibromyalgia. The neurologist that I see questions that diagnosis, thinking its the neuro problem that gives me fibro symptoms. Some Drs hold the fibro over me and treat me like oh its just your fibromyalgia then, not neuro. I also feel that because I say I have fibro that Drs think I'm a whiny faker and thats why they don't believe me.
The neuro doesnt think its a pinched nerve since my right arm and leg are affected. My shoulder is often stiff and in pain but that started after my initial clawing/hand weakness issues.
My MRI was w/ and w/o contrast on neck and brain. Brain was "normal" and neck was "good" whatever that means haha.
Did you ever find the source of your "walking through mud" because it sound like my walking through water. its not necessarily pain as much as it is the feeling of resistance. And what about your air conditioning on your scalp? Was your entire scalp cold or just little spots that migrate for a few seconds. My cold spray legs feels like tiny drops of cold water misting on my legs but migrating over an area but only lasting for a few seconds. Do they know what causes your problem w/ that feeling?
Yes, the walking through mud feeling is associated with my adrenal function. Its lousy, basically been knocked out because I have been on steroids since I got sick. You would need to do a cortisol test (bloodwork) to ascertain if thats an issue for you. The clues that it was a problem were that my hair did not grow appropriately and the walking through mud like prob, plus incredible fatigue, all the time, weight loss. There are other symptoms, but you can have tired adrenals, which is common in women, but its like a spectrum, with adrenal failure being on one end and tired adrenals on the other end. Sometimes acupuncture can help, but mine is way beyond that. Its also been a matter of teasing out what is causing what, steroids at high doses can cause myopathies (muscle weakness).
The air conditioning feeling, was weird, it was superficial on the scalp itself, the neuro figured it was nerve related and asked about shingles/rash or similar but I had not had anything like that. The sensation lasted on and off for about 4 mths and then left. At the same time, I had tongue fatigue, sounds weird, but my tongue would get tired eating food, I would have to stop eating and wait then restart chewing. That lasted about 6 mths and then has since resolved for the most part.
They have not suggested fibro to me, but I do have a whole heap of pain and a bunch of fractures in my spine from osteopenia/porosis, worsened by steroids and bloodthinners. My own explanation for it, which tends to be accepted by the Drs is that my posture has changed to accommodate the other symptoms of weakness, thus my muscles are compensating and complaining about it, hence the pain. My pelvic girdle and my shoulder girdle seem to be culprits and the weakest part of what is going on for me, but esp my pelvic girdle. Two neuros have noticed it, but neither can put a name to it, since I pass the EMGs and my muscle strength is now basically returned, but it was low initially. I am seeking a third neuro opinion in NY in two wks. I also have hand tremors, which were body tremors when I was acutely ill, its refined now to mostly my left hand, the tremors still worsen when I exert myself, the more exertion the worse the tremors.
Its unfortunate that you are encountering Drs that you feel are not totally believing your symptomology, frustrating to say the least. I think I have struck it well, in that I can be specific and talk medspeak when I need to do so, given my prof background. I also have definitive medical testing which has shown muscle weakness in my heart, lungs, diaphragm, muscle enzyme changes, which you absolutely cannot fake, so I guess that helps my stance and they found the pineal gland tumor, plus the adrenal function which is non existent.
My Drs are the best of the best and totally are supportive of me, having said that, we have an EXCELLENT relationship with my PCP and his staff, which I think is key. Still 17mths on, we still have no real answers, just pieces. I don't think I got hit with this randomly, I suspect a syndrome of some sort, but its a matter of figuring out what!
I am so sorry you are going through this, what did you think of the splinting idea? I would suggest you go to a good endocrinologist and see if that yeilds anything more, it could elicit something and you only have a few tubes of blood and some time to lose.
Have you been tested for lyme disease ? Untreated lyme disease can also cause the symptoms you described... including the hand clawing.
Twice, negative each time.
Have doctors ruled out Parkinson's disease?
Have a thought...I had clawing of my left hand which began with a popping middle finger and some noticeable swelling. A doctor in an acute care facility diagnosed it as Dupuytren's Contraction. He gave me an injection mix of lidocaine and steroid. He also said with everyone it was different on the amount of time the injection would give relief before needing another one. He also said that surgery would inevitably be needed to loosen the fingers but that it only lasted about 5 years before being needed again. The shot allowed my hand to get back to its normal posture and it lasted about 7 weeks before the middle finger started popping and swelling the left hand again. I did not have same sided weakness though and I wish you the best.
Would have your doctor check you out for focal dystonias - there're blood tests (they're genetic) that can be done to rule out that possibility. An EEG may also be helpful if not done yet.
Try going to a movement disorders Neurology specialist.
nobody has mentioned parkinson's to me. my tremor is minor, it only interferes w/ some fine motor tasks. my biggest concern is the clawing. can that occur w/ parkinson's? what is dupuytron's contraction? are there any symptoms aside from clawing that go along with it.
thanks for the suggestions, i'll bring them up next time i see the neuro doc
Hi. i have been having similar symptoms. Most of my symptoms occur to the right side of my body. Fine tremor of ring finger. Sometimes I limp for no apparent reason. Muscle and joint pain all over body. Stiffnes in started in legs and arms, now also in shoulders (both sides, but right shoulder more so). Very painful stiffness at night, yet I'm able to move just fine. I wake up at night regularly at the same time after 5-6 hours of sleep, wide awake, then can't fall back asleep.. Used to sleep 7-9 hrs with no problem. Some loss of balance. I read these are all symptoms of early onset Parkinson's. It's really frustrating because I have seen 2 neurologists and I'm told nothing is wrong with me. One neurologist was a top expert in diagnosis of Parkinson's. He gave me no meds and told me to see him in 6 months or if gets worse. My symptoms, especially pain and rigidity are getting worse. I guess my rigidity is not the kind they can see yet because it only feels to me like I will not be able to move. I just feel really stiff but can still move normally. I guess it's similar to what you describe walking in water. You feel stiff and slower but it's not noticeable to others. I have read and searched for pain and Parkinson's and it is common in early onset. Usually they attribute this to rigidity. Everyone thinks it's from stress but I know myself. How can all these symptoms be from stress? Never had any health problems before. All of this has been going on for 4 months and getting worse. It sucks because only I can feel all the odd symptoms and no one can help you until you get the classic symptoms.
I forgot to mention I also have the fist issue. I think my right hand goes into a fist because it bothers me that my ring finger has the tremor. On top of all I'm only 28 years old, just starting out as a lawyer, new wife who is pregnant. You could say it's stressful but only because of the health symptoms. The other stuff i couldn't be happier about.
Thanks for your input. I also limp for no apparent reason sometimes. Other times I am in pain causing me to walk funny. I have a follow up appt in June, but I'm affraid this isn't going anywhere. I'm glad to have found a dr that believes me, I guess this just takes time. Its very frustrating. I hope we can both get answers
I hope you don't mind me asking some Qs? Have you had any stiffness (slowness) in legs, arms, back or shoulder(s)? Do you have trouble sleeping at night or any daytime sleepiness? How did your symptoms first present themselves and how have they progressed? I hope they would better describe these symptoms. With me I sometimes feel fine and then out of the blue I start feeling weird. When I walk I'm conscious of my balance and my right hand. I feel some sort of pulsating and slight pain of the right 2 fingers. My hand feels more comfortable in a fist position. At night my body feels so sore and achy. I'm thinking of calling the neurologist again.
I don't mind your quesions. I have good days but the clawing is always permanent. The first symptom I had was my pinky finger on the right hand hurt. It hurt to bend and straighten and it looked swollen. I woke up one morning and it hurt. I did not bang it twist it or anything, at least not that I knew of. I went over to the ER while I was at work, (I happen to work in a hospital) and asked for them to look at it. I thought maybe I dislocated it and didn't realize? becuase it was so crooked looking and swollen. they did an x-ray and an RF and an ESR to test for rheumatoid arthritis. all tests were negative/normal. It continued to bother me for several weeks. Just before the pinky problem I had started to feel tired all the time. At first it seemed like i slept a lot but then progressed quickly to being unable to fall/stay asleep for long. I noticed it was beginning to be hard getting up in the morning. Like my legs don't work well after laying down/sitting for a period of time. i went to PCP who did ANA, lyme, crp, and thyroid tests, cbc, and some chemistry labs. all normal. they referred me to rheumy who diagnosed me w/ fibromyalgia based on sleep problems and joint/muscle pain w/ the trigger points. he had no explanation for the pinky issue. i let it go for a while but its affecting my ring finger too. i need my hands for my job but i have problems holding things squeezing things, etc. my leg problems aside from aching in the morning started relativly recently, maybe before Christmas 2006. I get weird sensations that my legs are wet and sometimes it looks like I limp but I don't hurt. Like my leg is falling? hard to describe. mostly my right leg. some days like i said i feel like i'm walking through water with resistance. like my legs are 400 lbs. it usually lasts all day when that happens. there are days that I feel like a million bucks, w/ the exception for my hand. Its slowly progressed over the last 3 years.
I do get rigid. like when i'm "walking through water" they feel stiff. I feel like I don't have much range of motion in my right shoulder either. i am tired in the morning and from maybe 2-7pm then i am of course not feeling tired when its bedtime so i lay there and lay there. I take stuff to sleep, but sometiems it takes a while anyway.
So, worriedmario, have you been diagnosed w/ anything? we seem to have similar issues. definitly keep me posted!
ya'll sound like me. I have all the same stuff; down to the off and on limp. instead of the "claw" my fingers just feel stiff; like i've been in the freezing cold. i've been having symptoms for 2 years: started with tingling in hands, feet and face. the feeling of walking through water: that is exactly how i described it to my neuro. they just say, "don't know."
i'm going to a YOPD specialist on Tues. i also have weird stuff like facial numbness, burning tongue, fogginess, eye floaters, headaches, shock-like twitches, cold spots, hot spots, ear pain, eye pain, creepy-crawling sensations all over, shoulder pain, forearm pain and tighteness like someone tightened at my elbow and wrist (makes it hard to move my last 3 fingers on that hand), left leg feels delay (to the point of limping sometimes, mostly no one else can tell and i ask people to really watch me walk when the symptoms are present), i will over step some like i can't tell what position my foot is in, intermittent blurred vision, the slowness no one else can notice (even my thoughts feel delayed, i refer to this as "freeze frame mode" like my head is being cut off from the rest of my body). the latest symptom is facial pain and facial and neck muscle tightening (feeling like i'm getting a face lift or someone has there hands around my neck; very claustrophic feeling) with throat tingling and a feeling of a lump in my throat at that spot, i've had the scope and nothing was there.
it's all so overwhelming: i'm a stay at home mom and it all started toward the end of my last pregnancy. i do have a slightly positive ANA. they told me i have fibromyalgia too.
this sucks; i totally live day to day. happy to wake each morning. we have very small children and we are such the perfect little family. this has really dampered our lives. LOL, chris
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
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?
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
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.
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.
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.
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.