Greetings -- I have been diagnosed with dystonia (cause and type unknown), but would like to list my symptoms here since I have mystified several doctors. Please note pre-existing conditions: mild non-shunt-dependent hydrocephalus; 2 arachnoid cysts; fibromyalgia.
1) Head tremors (bobbing)
2) Arm weakness and hand tremors
3) Whole-body spasms centered in lumbar spine area
4) Hip and knee spasms and frequent collapse
5) Lack of awareness of foot placement; foot drop
6) Rapidly increasing verbal and memory problems
7) Constant constipation
I am now mostly walker-dependent. These symptoms began about 2 months ago, with a sudden strong increase one month ago. I could not walk, thinking was disorganized, leg, head, and arm spasticity unresponsive to Cogentin or Valium.
Any information would be greatly appreciated. Email ***@****.
Sorry to hear about your symptoms. I'm not sure if all of them are related to one specific problem, but what stands out is your inability to walk and mental status changes with the history of "hydrocephalus." It would be important to know why you have hydrocephalus which can be a serious disorder in some cases. There is a disease in older patients (usually over 60) called normal pressure hydrocephalus which is characterized by urinary incontinence, mental decline, and gait instability. This is treated with meds such as diamox, shunting, or serial lumbar taps. Also, the location and size of the arachnoid cysts are important as they can be pushing on your brain if they are large enough which could explain some of your symptoms. These issues all need to be addressed with CT and possibly an MRI. Talk to your PCP about this and a neuro referral.
As for the head and hand tremors, these could represent benign essential tremors (familial and better with alcohol) or related to medications you are taking.
Foot drop and back spasms could be due to degenerative spine disease or a herniated disc.
Finally, I would personally have to examine you to confirm the presence of dystonia which doesn't exactly fit in with all of your symptoms unless you have some kind of neurodegenerative disease. Get a formal neuro exam at an academic or major clinical institution preferrably one with a movement disorders specialist. Best of luck.
I'd suggest that you ask your doctor to do a blood test for paraneoplastic disorder. This can cause the symptoms you are experiencing and may also indicate that there is cancer somewhere in the body. It is not something that most doctors will think of right away.
Thank you mehdc, for your good comment to Emily. I'm sure that it should give some positive good advice to someone, who probibly had a hard time to post in the first place and being unsure of the diagnosis/very little info given (just as bad)--gives her a good idea on where to go for help now.
I do have high blood pressure, regulated with Avalide and clonidine. Lately my numbers have been on the low side for some reason (not common for me), ex. 88/64 two weeks ago. I did have trouble with my feet and proprioception, but that has subsided at the moment. Some dizziness. No cramps in my calves. Head tremors have subsided to only a minor and occasional problem.
At the moment the physical symptoms of whatever this is seem to have eased off, to make room perhaps for cognitive ones. I am having more and more difficulty finding the right words for things, speaking without stuttering, and so on. In addition to that I am extremely forgetful. I would chalk it up to stress or medication or anything else under normal circumstances, but this is persistent and far, far worse than anything similar I've ever encountered before.
Regarding meds: I take nothing for this. I take my bp meds and Klonopin for anxiety. I was taking SSRIs for depression and anxiety but side-effects forced me to stop taking them.
Please be aware that I will not be able to see the neurologist (a new one) until May. Until that time it appears that I am on my own. I do appreciate input, but it has not escaped my attention that the doctor(s) who answer questions on this forum has not answered mine. I am not sure if this is because it is mysterious or because I have not been sufficiently specific in my descriptions, or otherwise. In any case -- with great respect to the medical professional(s) who does supply information here in most cases -- I am getting used to unanswered questions and dismissal.
Again, my thanks to the laypersons who answered my post. Any information is valuable, no matter what the eventual outcome might be.
I appreciate your information very much. If only any of the doctors I've seen would be as candid as you. I can accept the complexity of the problem faster than simple dismissal, which is what I've encountered. My neurologist did a cursory physical exam, said I had dystonia and that he did not know when it would subside, and excused himself. This is not the same as someone saying, I'm not sure what's wrong.
Interestingly, since I've tapered off all meds except those for blood pressure (Avalide and clonidine), many of my problems have eased considerably or disappeared altogther. Although I still find myself with some memory problems, frequent headaches, and a very annoying constant tinnitus, my motor problems seem to have gone away completely. I feel much better than I have in a very long time. So I'm considering the fact that I may simply be extremely sensitive to medications, and that I'm probably better off without them. I take Tylenol prn for fibromyalgia pain and soreness, and that's it. There may be no huge mystery here at all; only a quirk of my physiology, that I have trouble with medications.
I have been diagnosed w/Fibro, Dysautonomia, chronic fatigue, and IBS. For the last 2 years I have gotten worse. My job I am sure has alot to do w/my aches and pains. I had an incident @ wk where my BP was high, sweating, lethargic, faint,and bad a headache that day and the night before. I went to the ER and they came to the conclusion I possibly could have had a mild mini stroke/TIA'S, or this was from the dysautonomia. I have been complaining for years w/severe neck pain followed w/headaches (migraines) but all MRI'S have come back negative. My paincare physician feels like I really have veretbral artery problems but since the MRI came back once again neg. he just tossed it to the side. I describe the pain like, my head has fallen off its stem, w/a loud pop that hits my mouth and tongue, I do become very confused when this happens also and swollen in the neck and upper shoulder area. I really am stupid to all of this and I apologize, but I need help. I have also been experiencing the tingling in my face also. Please help...Iam tired of being missed diagnosed.
OMG! I've found someone going through the same thing as me!! EM, you're not nuts and not alone. I too have been dx'd w/dystonia, movement disorder, spastic Cerebral Palsey (CP). Let me start @ the beginning... I am 28, was born with MILD CP, lt sided hemiplegia. I walked w/a mild limp (like a sprained ankle) and carried my lt. arm slightly. I functioned normally both cognitively and physically otherwise until Nov 2000. I began having incredible pain and spasms in my legs and arms. (felt like being beaten w/a baseball bat) This would come and go along w/fevers, night sweats, HA's, tremors of hands, heads, legs, uncontrolled mvmnt of head and limbs (writhing, posturing), malar flushing, faint lacy rash on body (come and go, intensified w/heat,sun exposure), heart arythmia (sinus tach- hr 200 just lying in bed watching tv, dx'd as conduction abnormality, started Verapamil 180ER which helped), mental confusion, slurred speech, incredible fatigue, joint and muscle pain, elevated CPK, Troponin, Sed rate of 27. No one could explain this. I was first dx'd w/Lupus, then was told that dx was wrong, was dx'd w/fibromyalgia-again told was wrong, dx'd w/slightly herniatied disks L3,L4,L5,S1. Sent to 2 neurosurg. who said this too was wrong and my back was fine. Was given 3 ESI's, 5 trigger point steriod injections for "bursitis", countless oral steroids (all of which helped hip,back and joint pain to subside for the duration I was on them, as soon as they wore off pain,spasms, swelling of legs (which also have an orange peel appearance frome calves to top of buttocks), hands, feet and face. The hip/back/joint pain sent me to the ER multiple times. I too have constant constipation (had to be scoped in June due to blockage)In April I began noticing more difficulty getting up in the morning (stiff), increased mental confusion (found myself saying "I'm sorry I'm having a blond day, what did you say again" or, "oops, I forgot"), trouble getting out the right words (would want to say red but would come out with something like dishwasher; found myself saying "Let me get my brain working w/my tongue), frequently forgot things moments after they happened (much to the dismay of the docs I worked with), felt "spaced out" a lot and was not on Meds xcept BCP, Verapamil, Ibuprofen, frequent shaking episodes, night and cold sweats, extreme fatigue, began noticing a significant decrease in muscle mass on the lt side, freq. HA's, N/V (often projectile would wake me up in the middle of the night or early am and happen throughout the day), off & on tinnitis, difficulty hearing (trouble understanding what people were saying), poor concentration, increased difficulty walking, gait becoming more and more spastic to the point I am now w/c bound, frequent blurred and double vision. No one can figure it out. My PCP states "you're hitting the walls of medical knowledge and need to accept your condition." My neurologist did an MRI of the brain which showed enlarged blood vessels on the rt side (cp lesion?)and a nonspecific focal signal alteration in the frontal paraventricular white matter. (radiologist was "unsure of significance in acute setting, no prev. MRI for comparison"-my last MRI b4 this was 2/2000 this one was Aug 2001. This signal alteration was not present on prev. MRI. Enlarged bld vessels have always been there) He tried botox inj into lt calf to release tight musles (achiles tend. is like a steel rod!) with mild success that was very short lived <1mo, also did an EMG which showed abn fnctn in lt leg/hip. (don't know exact results), wrote for w/c for lifetime use-Dx: CP and said he'd see me in 2mo. I went to an MS specialist who said it was my CP. My body just couldn't compensate for it anymore. Also stated there were some characteristics of dystonia. Dismissed all other sx's and suggested I see a PMR doc and start Baclofen (note, my neur. tried Zanaflex, Neurontin, Dilantin, Duragesic 50mcg patch, vicodin 1-2 q 6h prn pain/spasms with no improvement and all made me feel like a zombie- the only thing I stayed on was the pain drugs as pain had become intollerable and my GI doc demanded I quite using Ibuprofen for pain control-slight ulcer issue) and poss look into ITB and have surg. on heel cord to correct foot drop. Said I don't have anything else, just CP. I was under the impression CP did not get worse. Why am I suddenly having this @ 28?(my posturing/spasming is worse a lot of times than the CP pts (children) I used to take care of in my nsg career) I am also falling a lot. (>3x/wk), I have trouble transfering, huge intention tremor, trouble dressing myself due to loss of fine motor skill and mostly due to severe posturing/spasms/pain. I spend a lot of time in a completely backwards C postition, with my body writhing uncontrollably and I am unable to speak clearly, I know what's going on and I know what I want to say but it won't come out or worse yet, something completely off the wall comes out! I also have difficulty urinating. Have the urge but can't start or maintain a stream. Urine culture negative. Am still constipated despite laxative,stool softner use, even when I don't take pain/spasticity drugs!I have seen the PMR and he dx'd me w/ Spastic CP w/lt sided hemeparesis, movement disorder,dystonia. He rx'd Baclofen 10mg TID (made me horribly ill and stupid, very drugged), cont. on Duragesic and Vicodin at above doses respectively, Phenergan 25mg q6h prn nausea (use only on day I change my patch as I spend that day puking,)We quickly stopped the Baclofen. He did 12-18 (can't remember exact # but was an awful lot) Botox inj. in lt leg, buttock area as well as Lidocaine inj. into the lt SI space as he thought this could be contributing to pain all guided by EMG. This elicited very minimal to almost no effect. I was actually more spastic and posturing more 2 wks later! He then rx'd Valium 10 mg QID as needed for spasms along with my normal pain meds. (I was leaving to get married and celebrate x-mas w/family and would return in Jan) this was to be a temporary stopcock. I returned in Jan having lost more muscle mass and function. I could stand very little now. Baclofen pump was rec'd. and I was started on dantrium 25mg @hs,& carbidopa? 1 tab TID (neither helped and the later was discontinued) I remain on all the other drugs though) I went for the trial on 2/8/02. My ashworth scale prior to inj. was 5 bilaterally and spasticity scale was 4. (bad!) 30 min aft. inj. those scores improved greatly and w/in 2hrs they were 1 & 0! I go to have the pump placed next Fri. Still, no one can tell me why this is happening. I've ckd on CP boards and posted my sx's and dx to see if other CP pts encountered the same thing and they all say the same thing; " What the heck are you talking about? CP doesn't suddenly get worse. It doesn't get worse at all. What you're born w/or w/o is what you got. Get some new docs!" Can anyone help me with this? I am falling more and more now, cont. to lose muscle mass, have speech,hearing and visual difficulties,fatigue, nonstop posturing and spasms along w/severe pain, mental confusion, mood swings, night sweats, cold sweats, unexplained fevers, maler flush, recurring (though infreq. now) lacy rash on body, swelling of face,hands,sacrum,legs,feet, urinary retention, constipation. What gives? When is this going to go away or how do I find someone who can tell me what is wrong w/me? Please help. Also, any info you have on adult pt response to ITB (would they do it again, why or why not? What was their post op exp. like, is the pump working for them?") would be greatly appreciated. I need all the info I can get before Fri.
Jen (otherwise known as hurting and lost in the medical maze in Austin)
Judy, Iam going to have an MRI/MRA-angiogram on 03/06/02. The doctor is trying to r/o MS plaque on the brain and a positive vertebral artery. I have had MRI's/MRA's w/o the dye back in 1998, but it all came back negative. I am really desperate to find out for sure what is wrong w/me. My insurance company (provided thru work)for STD/LTD is not recognizing my fibromyalgia as a disease that can cause me to have problems like I am and debilitate me or anyone else w/this disease. I should find out the results on 03/07/02. Wish me luck! If you do have any suggestions for me please throw them my way. By the way my neck problem is very irritating.
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