undiagnosed/ stinging burning toe spasms and gait problem

[crystaly]

I started having problems in Sept.2004.Burning stinging pains at first in different places mainly feet ,hands. Couple weeks after the toes on left foot went into spasm, then my right foot. I then developed a gait problem stiff legs when walking which then became myoclonic jerks when walking or standing. I also had problems with balance. I had many tests eg. mri brain scan, nerve conduction tests, chest xrays, blood tests all of which were normal. My neurologist also did some tests for Lupus as I am sensitive to sunlight (polymorphic light eruption? ) The conclusion was no diagnosis.My reflexes were ok but I cannot close eyes while standing as I have had many falls.  I was prescribed Clonazepam 3x day 0.5 .This controlled jerking but didnt alter gait ,then amitriptyline 50mgs for pain.
I have had physiotherapy and been to see a psychologist as one Dr mentioned conversion disorder. I definately do not have this according to her. It is really frustrating not having some sort of answer. Ive also had problems with diaphragm going into spasms for 2 wks at atime. Diazepam resolved this after 1 week course.
I came off clonazepam in October this year.My gait pattern has changed again stiff left leg which swings out then in,toe spasms the same ,pain less, balance same. Advice please !

[crystaly]

Hi ,Thanks for that info. I am female 48yrs old and have been with the same guy (married for 31yrs ) and very happy. Nerological exam reveals postive Rombergs but other reflexes appear to be normal. They did not do a full blood chemical profile eg calcium etc.
As far as I know I have not been near any toxins. I dont drink alchohol but do smoke.
I do have triggers . i know that the muscle spasms in my feet are caused by changes in temperature. Any slight drop in temperature brings spasms on in my toes which then lock. The spasms do not hurt. The gait problems start after I have walked for a few yards. The more I walk the worse it gets and I then stagger quite badly and have to sit down for a while. After a short rest I can then continue to walk again for a short while. I have tried to retain my independance as I try to have a positive outlook and make the most of what I can do. Although I do find it quite frustrating at times. The spasms in my diaphragm occur when I have a chest infection. Antibiotics and a short course of diazepam clear this up. Rather a puzzling set of symptoms ! Be grateful if you can shed more light on subject.

[Forum-M.D.-CM]

the more I read what you describe , it sounds more and more like a muscle disorder. What work are you in? Do you have children?

There are some rare muscle conditions that are spastic. For sure you need a serum calcium.. Did you ever have thyroid surgery? what is your medical history for surgery or illnesses?

There are muscle specialists but I cannot point you to one, ijust know they exist in large academic medical centers. i would call the closest one to you and ask if they have a specialist in muscle diseases. In the mean time by all means get a chemisty profile esp Calcium, magnesium, phosphates, and potassium, Sodium, chloride and CO2. Come back if you wish, Good luck. Somewhere out there someone will know what you have OR you will uncover some big clue. Where were you and what were you doing the very first day you had the symptoms??

[crystaly]

Apologies for taking up so much time.  I do not work. I have had four children (now adults with children of their own) I havn't had thyroid surgery. The only illnesses ,operations I have had were in my twenties I did have a pulmenary embolus ( due to pill ,hereditary factors I was told) I also had a mastoidectomy, diverticuli& appendics removed. I also have an acute reaction to sunlight (extemely bad blistery rash on all parts of body exposed apart from my face).
Any one who has any comments I would be grateful if they contribute.

[daisyrose]

Hi- This sounds sort of similar to something I've been going through. I'm about the same age, have 3 grown children, and the biggest complaint right now is the severe muscle spasms pretty much from head to toe. Including my face. It bothers me to chew, swallow, talk, etc. I'm taking Baclofen 10 mg 3 times a day for it and it helps. I too have a hard time walking, some days more than others. I seem to be going through a tougher streak right now. Do you ever have vision problems? I get blurring and double and it's been bothering me to look up and sideways. This problem has been ongoing for some years with slightly different problems taking center stage but you get the idea. I've gone to oodles of drs. All with different opinions. Had the gambit of tests. Clinically they say ms, bloodwork says nothing, MRIs only show a couple lesions, and I can't have a lumbar punture because I have bleeding problems.I recently went to an ms specialist who said it wasn't ms...but offered no idea what else it could be. So, sorry I'm not really helping you out here just rambling. But at least you know there's somebody out there...If you learn something else I would be interested in knowing more too since I'm sort of in "limbo-land".

[crystaly]

Hi, Sorry to hear you have had similar problems. It is quite frustrating not knowing what is wrong! I,ve been down the road of is this conversion disorder (psychological) and the Psychologist i saw is of the opinion it definately isn't. I think the words she used were she had never met a more grounded logical person. Nice but doesn't really help! I would say your symptoms do sound like MS and from what I understand sometimes its difficult to diagnose especially without a lumber puncture which incidentally I have had and the result was normal. The fact that you have MRI lesions and mine was clear? suggests that maybe your case warrants further investigation.
I do not have problems with vision or swallowing. I have identified the triggers and they are as I stated to the MD change in temperature and walking . My left foot  goes into spasm as soon as I uncover my feet and recently I have started to get tight muscles in my throat. Like you I do have some variation in symptoms. I am definately going to get a referral to a muscle specialist if I can as the MD suggests. From what I have looked at regarding muscle disorders other types of investigation are undertook. Perhaps this route would help you as well.Try to remain positive it does help. I know how frustrating it is believe me! Crystaly

[daisyrose]

Hi it's me again. thanks for your comments. Just to add these similarities: gait problems, stiff legs, balance problems, falling(mostly to the left for me), I can't stand with my eyes closed, I always tip over(again to the left),I too am sensitive to the sun but it doesn't seem like anywhere near as much as you are, maybe it is just that I'm just sensitive to heat in general I'm not quite sure. I can't do the heel toe walk very well, I tend to lose my balance trying.
As far as the spasms mine seem to come from nowhere, but being tired certainly plays a big part. Activity (like chewing or writing or walking) can bring them on and a few times I did notice coldness could do it. By the way, what are myoclonic jerks? Good luck to you. daisyrose

[crystaly]

Hi Daisyrose,
Your symptoms mirror mine really. Are you sure its the heat your sensitive too and not sunlight! I have been diagnosed with polymorphic light eruption. Long word I know. Basically my immune system attacks my own skin if subjected to sunlight. If you don't get symptoms near the fire and you do in sunlight it may be the same.individuals can have it in degrees .If you only have a mild reaction you may still have it. I have had this reaction to sunlight for 20years and only saw a specialist dermatologist 2 yrs ago. Great eh! The other symptoms you describe balance, gait,spasms etc are virtually the same as mine. It took me a while to realise I had triggers maybe you do as well. My triggers as I said are definatly temperature related for foot spasms and activity related for gait problem. Myoclonic jerks which I had for almost a year are involuntary jerking movements. Basically as soon as I stood up or tryed to walk I looked like I was jumping up and down all the time. Its awful. If you havent experienced it you dont want too I can assure you. Looks a bit like Parkinsons Disease. Anticonvulsunts seem to have sorted this out and thank god I have not had any episodes since I came off them.I really hope you find the answers you are looking for. Its much easier when you know what you are dealing instead of thinking what next! just think I had a reaction to sunlight for 20 yrs and various Gps didnt know what it was. Thers hope for us both. maybe the symptoms will disappear you never no. Im being positive Hee Hee ironic sense of humor.
Any one else got comments we'd both like to hear them .
Good Luck Cristaly

[lmbraddock]

OMG...this is crazy....i have been sick with symptoms kind of like the ones you two d4escribe for over a year now....its so nice to know other people have seem millions of doctors and had millions of test and still not found anything out...i am not alone...yeah ive been through the whole conversion disorder thing as well but my counsler also says no....do u still have doctors trying to act like its in your head b/c they cant find it also???....do either of u also have any of these symptoms...greeral aching apin in bones,joints and muscles...ramdon shooting pains...lack of energy...extreme fatugue...difficulty convenrating, trouble remmebering things even if you write it down and look at it several times...confuison, difficulty getting words and thoughts to come out correctly...skin sensitivity...kidney pain and UTi although they can find no reason for the UTI and can not get rid of it....hot flashes....getting your body parts stuck...its like you go to move and it wont move and you have to massage it to get it to get unstuck....i would love to know if you have any of these as well as the tremors and spasams and eye problems and things that u mentioned...especially b/c of the fact that neither of you have found an anwer and i have not found one and its so great to know i am not alone but i also know how miserable you are b/c i know how i feel and i feel terribly sorry that you have to go through it...i however an only 23, i am married and we raise my 16 yr old sister so we have a little family here...did these thing shappen to the two of you very suiddenly....mine was over night....well thank for any info you may be able to give...if i hear anything that i have not been tested for or antyhitng like that i will share it with you b/c i know you must be grasping at straws like i am..i hope you wii do the same...good luck!

[crystaly]

Hi, Sorry to hear that you have similar symptoms. You are quite young so it must be more difficult for you? I think when medical tests come up normal Drs have to try and explain it somehow. The conversion route gives Drs an alternative explanation to I don't know! My neurologist is ok she basically said that the chemical/electrical messages which the nervous system produces are so complex that medicine can not always offer an explanation. Doesn't stop me looking for one though. I think it is human nature to look for a cause when you have previously been fit and well. I do have pain in bones,joints and muscles. I also get electrical shooting pains sometimes. My symptoms just started like yours,but in various stages over a period of weeks. I don't have problems with UTI but re spasms ,my toes on both feet go into spasm (lock) totally and I cannot move them. If however I wrap them up really warm I can wiggle them. Bizzarre I know!
I have  realised that I do have triggers for foot spasms ( any change in temperature however slight towards cold) and any  walking causes gait problems. I walk like a robot legs stiff . Try and keep a day to day diary of symptoms. Mine can fluctuate. I only realised that |I had triggers after doing this. It may help you to report these to your Dr. Try to focus on what you can do it does help. I wish you all the luck in the world and will add a comment if I learn anything new. Best wishes to you and your family. I know it must be difficult for you at such a young age to remain positive but believe me it does help. TAKE CARE!!!

[zoletta]

I know exactly what is causing these problems. Have any of you taken a prescription for Levaquin, Cipro, Trovan, Floxin or any antibiotic that has a 'flouroquinolone or quinolone in it? There are perhaps 20 of them out there, all of which may cause irreverisible damage, including Central Nervous Systems problems and deformed cartiledge.

I was given Levaquin for pneumonia on Nov 28th, 2005. To this day I am suffering with aches and pains that seem to move from one part of my body to the other at random. My eyes hurt, my ankle felt as though it were broken, my wrist felt crushed, headaches, dizziness, insomnia, fatigue, confusion...weird 'wet' feelings under my skin...

These quinolones can also be responsible for extreme sun sensitivity! When my doctor verified that the pain in my ankle was from the Levaquin, which is (because of the quinolone in it, like the other 20 drugs which have the same) so incredibly powerful, it can internally rupture your tendons! ALL adverse reactions to quinolones may appear even YEARS after taking the pill!!!

I thought I was alone, but after weeks of intensive reseach on the internet, I discovered a message board with over 1,300 members...ALL of whom have the same 'undiagnosable' problems. There's a lot of advice on there, and if you have taken any of these antibiotics, PLEASE immediately file a report to the FDA, we are trying to get this taken off the market as quickly as possible!

My direct email is '***@****'. (I know that's a stupid sounding email, but it was from years ago!) Anyone is welcome to contact me, I will help in any way I can with the information I've learned.

To read the full list of antibiotics containing quinolones, go here: http://www.geocities.com/quinolones/

To read what other victims are experiencing, go here: http://health.groups.yahoo.com/group/quinolones/

[daisyrose]

Hi all...sorry I haven't responded sooner but you know how busy things can be this time of year!!!Happily though. I hope for you all too. Actually my vision has gotten worse and I have to see a neuro-opthamologist in Feb.,and the day before Christmas got orders from my neuro to have Lyme titer repeated. They do that from time to time. I don't know if they have any new ideas or info that they didn't mention....but we'll see. Imbraddock alot of your symptoms sound familiar too. I probably was in my 20s when I started with all of this, but I totally cant remember if they started suddenly or slowly. Kind of both, some snuck up on me,but some were sudden-- one day I was walking upstairs and I lost vision in my left eye. But I get the pickies and numbness in my feet and hands when they get hot I did take notice the past few days. Muscle spasms from cold. Stiff legs like a robot, slow walking, I run into things easily especially if I try not too. Crowded malls are difficult.I've really noticed that one lately!! I've gotten some looks but I just smile back at them as I drag my gigantic package through the mall.

[floxie]

Hi Zoletta,  I know exactly what you're talking about . I personally think that most of these complaints on this forum are caused by quinolones.  When will anyone take notice?????

[lmbraddock]

yes ur right its better to focus on what u can do...its just nice to know when u arent alone..i personally would much rather a doctor tell me the truth that they do not know instead of trying to pretend like its not important or that ur crazy or it will just go away, i think its great what ur nuerologist said, its a good way of admitting they can not know everything and as much as we wish want to know its true that they can not know it all, noone knows everything so i guess its good as long as they try and mine keep trying and like you said as long as we dont give up and keep looking for answers also....as for levaquin i have taken it for my kidneys and also macrobid  but i was already sick by that point... i have been sick for over a year and my kidney problems started about 4 months ago...besides i can not take alot of those meds i am allergic so i do not think that is the problem especially scince my dr has already checked to see if there were any meds that may have caused this illness to occur but thank you for the suggestion...Hope you all had a lovely Christmas.

[crystaly]

Hi, Im due to see my neurologist on Wednesday so I will let you know if I find out anything new. I guess I,m lucky having a neurologist who is willing to admit that the human brain is that complex that they don,t know everything. Shame other professionals can,t do the same. Inferring everything is in your head because they do not have an answer is unfair and only adds to the stress felt when you yourself are struggling to find answers. You may have days when you feel down and thats natural but personally I think you are very brave. I sincerely wish you, your husband and your sister all the best. I hope you do find some answers. You sound like a strong minded individual who does make the most of life and don't let professionals in the medical world convince you otherwise because they are not big enough to admitt that their knowledge is incomplete. You have your whole life ahead of you. Don,t let anyone take that away from you. HAPPY NEW YEAR TO YOU AND ANYONE ELSE WHO HAS THE MISFORTUNE TO HAVE dOCTERS WHO DON,T HAVE THE GUTS TO ADMITT THEIR KNOWLEDGE IS INCOMPLETE. CRYSTALY