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Head to toe body twitching w/other symptoms

Lynn2
0 Recommendations

I am putting this out here b/c I am at a crossroads. I need to find a doctor or a facility that is knowledgeable in this area. I have seen lots of docs with no diagnosis. Here are the basics:

-Head to toe twitching for twelve years. Started after a viral illness. At first I also felt weakness and lots of headaches, but that part got better. I have numb feelings, pins and needles feelings and even feel like something is crawling on me at times and it is not.

-These symptoms sometimes affect my face and tongue but so far no problems with speech, swallowing or breathing. Thanks to God.

-Have had numerous MRIs. All were great! Emgs in 1995 and 1998. Both clear. LOTS of bloodwork. I am anemic from time to time with a slightly high platelet count. All else is good. I am asthmatic and have allergies. That is under control with meds.

-I have had remissions at different times when pregnant and nursing my two sons. The hormones must affect this illness. I also think there is an autoimmune component. When my immunity is down, I feel better, when it is up, the symptoms are worse.

-I am on two muscles relaxers b/c of the muscle spasms. They do help. I do yoga and it has been very helpful. So far, thanks to God, no loss of function. There have been times when the symptoms have put me down. I get migraines but also clench my teeth-bruxism.

I have researched this to death. I cannot seem to find a doctor who is able to diagnose this problem. I am afraid that when I am done nursing my youngest son that the symptoms will come back 100%. I feel terrible when the symptoms are strong and it is scary not knowing what will happen next esp. with two small children.
Does anyone have this or know someone who does? Does anyone know a facility or physician that would help? I almost think I need a neuroimmunologist with a specialty in endocrinology.
THANKS so much!
Lynn

Explore topics in this discussion:

Exercise Surgery Motrin Neuromyotonia Soma Pregnancy Muscle cramps Bruxism Diazepam Flexeril Ion channelopathies Autoimmune diseases Carisoprodol Advil Isaac's syndrome Allergies Ibuprofen Stroke Sweating Weakness Pain Dystonia Myasthenia gravis Lorazepam

29 replies

honeythief

hi there lynn . have you been tested for myasthenia gravis? take care ... john

Lynn2

John,
No, I haven't. I think that the neurologists always rule it out by sight. I have wondered why they never tested just to be sure. They always think I am so "healthy" looking and sometimes brush me off. I see that you have it. Are the symptoms very similar to mine?
Thanks,
Lynn

saoirse

Hi Lynn,

Sorry for this long message! As your message is dated June, you may already have got somewhere in trying to work out what is wrong. I wonder if anyone has investigated you for neuromyotonia (sometimes called Isaac's syndrome). I have this, been diagnosed for 5 years now but in fact my symptoms started after I had a viral illness not long after my second child was born, 22 years ago! It took that long to get a diagnosis, all the time it was getting steadily worse. I had numerous tests and EMGs, MRIs etc but it was a neurologist who is an expert in myasthenia who worked out what it was (it isn't myasthenia). It is autoimmune, antibodies against voltage-gated potassium channels is the usual mechanism. The antibodies are difficult to detect, but detailed EMG studies can usually be diagnostic as long as it is someone who knows what to look for. It is often associated with other autoimmune diseases, such as thyroid problems (I am on thyroxine and thyoid failure runs in the family).

I get itches and crawling feelings all over the body, including sometimes inside my mouth, on my tongue and also affecting eye muscles sometimes. I also get strong sensations of something crawling just under the skin, which is really annoying when you are trying to get to sleep, and also sharp "pin prick" sensations as though someone has just stuck a pin in you.

Pins and needles of feet and hands (and sometimes tongue) are now routine, plus very weird sensations when my foor leaves the floor, as though invisible threads are pulling on the soles of my feet. My toes all twitch by themselves, all the time (as though I were playing the piano with them, except I couldn't make them move with those individual little movements if I tried) and the muscle contractions have made my arches very high. The worst times are when larger muscles cramp - it took me a long time to realise what the sudden, sharp pains (as though someone was sticking a knife in) were, on my thighs, back and upper arms. These can also feel very sore to touch for a long time afterwards, which made me realise these were actually cramps. I also have the more familiar calf-muscle cramps. All of the muscle symptoms go on through the night even when I am asleep, apparently that is one of the characteristic signs of neuromyotonia. It makes it hard to get to sleep sometimes.

Hyperhidrosis, or excessive sweating, is another feature of this, but it comes and goes and is certainly not present al the time. Heart arrhythmias started about three years ago, and once it was all checked by a cardiologist, I have learned to cope with them and just rest more. They go on for about three days and then seem to tail off, uncomfortable at the time and I have had to go into hospital once when they were particularly bad.

Occasionally I have a sudden, severe muscle spasm, usually in my neck or back. These can be incredibly painful, and the effects can go on for days. I have been given diazepam to self-administer when this happens. I usually have to take it for a few days, then it all calms down again. I have to be careful not to stretch when I wake up in the morning, or a sudden movement when I have been still for a while, this can set them off.

Three times now a small muscle in my ear has been afected, this has caused severe distortion of everything I hear, music, speech etc. The first time it was scary, but now I now that it will pass, usually after an hour or two. Best not to listen to anything - ear plugs keep sound out until it is over.

Overall, the constant aching, weakness and pains are the most difficult to deal with, but I have found that they are a lot less when I stick to a completely gluten free diet. I have since seen a gastroenterologist, and he is aware of the published literature on the link between "silent" coeliac disease and perpheral neuropathy (eg the research done by Hadjivassiliou et al) .

Neuromyotonia can be treated by use of an anticonvulsant, carbamazapine was the one I was prescribed, which stops the nerves from "firing off" and therefore reduces the twitching, cramps and therefore pain. I was on this for three years. However, all of these types of drugs have side effects, and I have found that a gluten free diet reduces symptoms to the point where I do have symptoms but with enough rest and pacing myself, I don't need the drugs.

I had two more children after it started, it got better each time and I do think that pregnancy reduces autoimmune symptoms.

If any of the above seem very familiar, maybe ask one of your physicians if it could be neuromyotonia. I hope this might help.

samilian

I also think you should consider testing for neuromyotonia. Have you been seen at a big medical center? I think this could potentially save you a lot of time, energy, frustration.... Keep us updated.

Saoirse- I am intrigued by your gluten-free diet. How long did it take until you noticed results?

Lynn2

Thank you for your information. Yes, it sounds very similar to my problems. Do you recommend a doctor or center in particular? I see you live in the UK. I don't know if you know of any doctors in the US who specialize in this area. I have wondered if I have this also. The last neurologist that I saw said that I did not have it, but did not tests. She worked me up for MS/which was negative/we did an MRI(had done a million times and always clean), and one other test which is for MS. That was it. I did not understand how she dismissed it so easily after hearing my symptoms. Do you only have the twitching in the toes? I have it everywhere and with the other strange sensations it is enough to make a person crazy! It is hard to get to sleep which is why I have been on Flexeril at bedtime for some time. I have also been on lorazepam for some time. It helps some, but does not cure it. If I don't take it, things are definitely worse.
Lynn

Lynn2

Where did you go to get diagnosed? I have to Duke, and I am sorry to say that it was a disappointment. They told me I was too "well" to be there. I guess if you are not in a wheelchair then they do not take you seriously. Are your symptoms the same as mine?
Lynn

samilian

I was dismissed quite a few times before being taken seriously-- this was hard for me to understand as the twitches were visible and I had significant problems walking from the cramping/twisting of my leg muscles. "Perhaps you slept on your leg wrong?" is one of my favorite quotes. ("For four months?") I definitely got the "but you look just fine" comment more than once. I was actually told by one doctor not to go looking for answers. I mention this only to let you know that others have shared your same experience. It is infuriorating. Over time, I have elected to see the humor in it. This helps.

My initial doctors also focused on MS which was reasonable- but after a point it was time to move on. I am seen at a movement disorder clinic at Baylor in Houston. They made the diagnosis through my clinical history and a positive antibody test to voltage gated potassium channel antibodies (VGKC antibodies). I know there are doctors that specialize in neuroimmunology as well- but you want to be sure not to narrow down the field too much until you have a diagnosis.

Your experience at Duke is disappointing... but definitely don't give up. There are good doctors out there who will take an interest in your condition- sometimes it just takes a little searching.
I do have twitching everywhere. I have only one real sensory symptom which involves a periodic cold feeling in my left face and arm. My motor symptoms are the most limiting (dystonia-like contraction in various muscles) but are paroxysmal (symptoms come and go throughout the day/week). Interestingly, they are almost always action induced. Of note: anti-seizure meds have helped me tremendously and have improved my mobility by about 75%. Decreased twitching is also really nice!

Lynn2

Thank you so much for sharing. It really helps to hear that others have had the same experience with doctors. I am still holding on to the hope that I will find the right doctor. I may need to go to a different and bigger medical center.
I wish they could bottle the hormones that put this into remission. I would buy it at any cost!
If you ever find anything else that helps you, please keep my email and send it out. I will do the same. Right now, it is yoga and my meds. only. I wish you many days of feeling your best!
Lynn

Wintersweet

Hi Lynn,

I have had several years of odd sx which include at times, very odd cramps, body jerks & twitches, as well as tingling in various areas off and on, most notable in the tongue, palatte, chin, and limbs. Some of the cramps have been really odd, like along a thin line of muscles in the back of my throat & back of my nose, and I have had cramping up in the shins affecting my walking, and body jerks with a twist of the spine and electric shock sensation. Luckily in my case though, the intense ones are infrequent, and the crawly sensations, vibration sensations, crampiness, and twitchiness have been for the most part very subtle. For me, the biggest problems have been very frequent headache and/or nausea, cold sensitivity (I have even gotten sores from lack of O2), intermittent burning & aching pains esp in my spine, pelvis & trunk area, and low stamina. I do yoga too, & I love what it does for my overall health, though I can be in more burning pain afterward.

I wish I knew what was wrong with me, and so I am more curious to know what you may find out. My neuro has said that even a small amount of nerve damage can cause these things to happen and I think that makes sense. Apparently 100s of things can cause a mild nerve damage from what I hear, so even though I do have some unusual findings on MRIs, everything has been stable over time and they may not be related to the sx, though who knows. Time will tell, or maybe not. I had never heard of neuromyotonia, so I am curious about learning more and if others have some of the other sx I have.

I also seemed to start during a virus shortly after my 4th pregancy which was a miscarraige, though there was one episode of an intense cramp-jerking before or early in the pregnancy. It has occurred to me that the virus connection is simply that it brought out the sx more and so I just noticed them --I have had this happen since esp with a virus bringing out the tingling paresthesias.

Oh--I also have had some weird temporary abnormality in my pupil making it mishapen --like a cramp in the iris???? I would be curious if someone else has had this.

And one of the several times I have been tested for antinuclear antibodies it was positive, but maybe this means nothing. Do people with neuromyotonia have positive ANA?

So, I am not sure if this is too helpful to you, but I thought I would share an experience with some overlap, and what my dr has said.

Good luck figuring it out, and I am very curious to find out if you do.

samilian

I thought I would reply to Wintersweet's comments. I hope this information is useful!

My neuromyotonia seemed to begin after a viral illness.

My ANA is negative.

My right pupil intermittently dilates- there is some thought this represents a dystonia or cramping of the muscles that control the pupil. It usually happens around the same time that other muscles have problems as well- so it seems connected.

I had a small brain MRI abnormality that on repeat testing was gone. While some doctors feel it was artifact- others feel it was real and that they often see these things in people with diseases like mine. i think either could be correct.

I intermittently get intensely cold feet, hands and left arm. When things are in full swing my whole body shakes with cold. I'm not sure if they are really cold- or if they just feel cold. But sometimes it really feels like these areas are not getting enough circulation. It is definitely not normal- but thankfully is intermittant in nature. No one I have talked to seems to have ever heard of this before- so I am interested you have something similar.

I have lots of trouble with facial and pharyngeal muscles- rarely I have had minor swallowing issues. I rarely have had minor vocal cord involvement. (hoarse voice- voice peters out after couple sentences) My only significant sensory symptom is a cold tingling sensation in focused areas of my left face.

When I am not well controlled on medication I feel sore much of the time. When I wake up in the morning- I'm certain i must of done a full gym work-out in my sleep. I am essentially disabled when it comes to walking secondary to cramping. However, on the right meds- I lead a full and active life, with only intermittent setbacks. For this I am thankful.

I do have one large body jerk in my right arm- again, only when things aren't well-controlled. It almost feels like a partial seizure. This is pretty rare.

I'm not sure this is helpful- I touched mostly on symptoms that had some similarities with yours, so the information is somewhat biased and incomplete. I am particularly interested in your pupillary changes and cold sensitivity. If you get any interesting explanations from your doctors please pass them along!

Good luck sorting things out- having the right diagnosis can make all the difference...

Lynn2

Wintersweet,
Thanks for sharing. I can relate to many of your symptoms. As for eyes, I have noticed that my vision is not as good as it used to be and when I have migraines I cannnot stand the light. Also, my hearing is affected with migraines...can't stand to hear noise or talk on the phone. I never had these problems before. Also, If I hear very loud music, like in a car next to me, if the bass is pounding, it practically deafens me and is very painful. This never bothered me before either. I have lots of spasms and would have more if not for the muscle relaxers. This too causes soreness in my muscles. The twitching and sensory symptoms probably scare me and drive me crazy most of all.
I don't have a doctor's appt. at the moment. I will know next week if I will be able to go to a larger medical center or not. I will definitely post here if and when I get an appt., and any results from that appt. I can tell you, I'd love to go to Mayo. They have a listing of all of these disorders and not everyone does.
I did have a detailed immune system study done years ago and the ANA's to my myelin were very high. This makes doctors think of Ms although MS is not the only disease in which the immune system turns on the myelin.
I need to look at my test sheet again to see the other results.
Post with any new info.!!
Lynn

Lynn2

I wanted to comment again. I forgot to tell you that I have hyperhidrosis and have had it for some time. I had it before the other symptoms.
Also, as for the ears. I have noticed that I cannot hear a deafening sound/vibration anymore. It makes my ears and head feel like they will explode. It is a very strange feeling. I can't totally describe it. It is very uncomfortable.
Of course, when I have migraines I cannot talk on the phone (hearing) or look at light. These symptoms were not an issue even two years ago. I don't know if it is all related, but I feel that it is since headaches were a hallmark in the very beginning. I never had headaches before all of this!
Just wanted to remark on a few things I overlooked.
Lynn

MSMaven

Lynn,

I know what you are going through. I have had the same symptoms and issues for a very many years, actually since my teen years (now 58). I have been diagnosed with everything from "tics" to psychiatric problems, to "unknown" neurological problems.... In 2000, after being hospitalized for a hear attack and subsequent surgery, I went through the mill of tests at Mayo clinic, Rochester, Minnesota. To me, they are the very best. Not aware of where you live, I don't know if that is even a possibliity for you? I was diagnosed with Muitiple Sclerosis PLUS a fairly rare form of Parkinson's where the movements are over 80% internal, plus the whole body movements from neck to ankles and sometimes even the feet. I have no idea of what "it" may be called, however I do kow from the Neuro exams I have had, that the combination of the MS and the Parkinson's has caused me these "symptoms". It may have nothing to do with your issues, but I felt the need to let you know that I know what you are feeling. Additionally, the EMG, which can be a very painful. That test is totally controlled by the doctor that does the test and I could not get any two neurologists to agree on results? Also, I was tested for Myasthenia Gravis, to no avail. If you are anywhere hear the midwest, please do yourself a favor and go to the Mayo Clinic, in Rochester, Mn. DO NOT, unless you have to, go to the Mayo outposts in Arizona or Florida as they are basically HMO's and have no where near the reputation and care of the original. I can give you a name or two of Phoenix neurologists, if you are near here, but they still take second base. Good Luck and G-D Bless. Abe

Lynn2

Abe,
Thanks for the advice. I was considering the Mayo in Florida b/c I am in N.C. Are they truly not very good? What do you think of the Cleveland clinic?
How did they finally diagnose your MS? I have had so many MRI's--all w/out contrast--and they are always clean. They have all been done sporadically over the last twelve years. I also did an evoked potential test and passed that as well. I need new EMG's done. They were done in 1995 and 1998.
Yes, I have been told ALL I am is depressed too. Sure, you get depressed with illnesses like these, but it doesn't mean nothing else is wrong!!!!
I have been disappointed in Duke. Have not tried Chapel Hill in many years. They had an awesome neurologist there, but he retired.
THANKS,
Lynn

MSMaven

Lynn,

I am very sold on Mayo, Rochester ONLY. I believe I said that the one here in Arizona, as well as the one in Florida are just high class and quite expensive HMO's. Rochester is the ONLY true medical center, from my point. I was born there, saw the workings, know a majority of the staff docs and can tell you that you would not leave there without an exact diagnosis with the knowledge of what to do and how to do it. Cleveland Clinic is good. I went to Western Reserve University for several years and am -- more or less -- familiar. They are good. Duke and Chapel Hill have not empressed me at all. You should have another MRI and check on contrast this time. (It's like chicken soup, it may not help, but it won't hurt!) My personal experiences with the EMG have not been good. It takes a special doctor, who does nothing else and really is aware of feelings of and from the patient, not just the machinery. My last EMG I walked out on as the doctor started searching a book to attempt to see where the best place to put the needles would be. Not with my body?? My body "twitching" is getting much worse every day. It used to be just internal and now is both. Because of the MS, the Parkinsons gene is very prefalent. For my body it makes sense. Don't allow the docs to tell you. You tell them to LISTEN to you. .Don't just -- in my humble opinion -- attempt to have a doc tell you what you have ? Be certain, also, to have them rule out what you DON'T have. See the best Neurology department you can get to and afford. See a NeuroPsychiatrist, if only to rule out. No shame there. Good luck and keep me informed. Abe Berlin, Kvetch !

Wintersweet

Hi samilian,

Thanks so much for replying. It is helpful to know of the overlap of a number of sx I have together which I have not heard of others having together.

Here is a little added info on my cold sensitivity:
It is a pretty significant sx for me, and had started right alongside the rest of the problems, so I am pretty sure its connected. It was the first thing that brought me to the dr as I had a dark red closed sore spot on a toe and being a bit clueless, had tried antifungal cream. The dr said it was tissue damage from lack of oxygen and I had Raynauds. Then I connected it with an evening I was cold and couldnt warm up flet sick overall, and my toes were white for hours despite my efforts --this is not typical raynauds. I had been very healthy and almost certainly this was not due to arteriosclerosis, and tests for a couple inflammatory conditions were negative as expected. My soles can also get patches of gray in the cold, and it is very hard to warm up. Strategies:

1. Don't cool down. The dr advised tea in a thermos any time I go out in winter (I live where it gets cold down around or below 0 sometimes in winter), I also take blankets and am not ashamed to admit I am a "cold wimp" to people who laugh.

2. Warm up right away with exercise hot water blankets. Even with effort, I get cold toes and then I have noticed even a sweaty workout for a half hour and they may still be cool -- hot shower after that and extra effort to stay warm. hot water if shower isnt possible. Request extra blankets or even heated blankets if needed & you are in a medical setting

3.You have to work extra hard to protect yourself --just saying I get cold easily or cold sensitive doesnt distinguish the special problem

4. I tried a medicine- usually a HBP med, a couple winters which dilates the blood vessels and it seemed to help, but I am trying to avoid regular meds wherever possible.

On the pupils & eyes
This is very helpful information that you offer. I frequently have one or the other slightly dilated, and often an eyelid, almost always one side feels stiff or crampy, and hard to open fully, though I am always able to open it. But what was really weird was to have some intermittent pupil changes like an oval or elongated cats eye shape. It was brief each time and has not happened recently. Pain and blurriness accompanied. If theres a next time, I will take a photo.

On the brain abnormality: I am curious what abnormalities or artifacts are associated with this condition.

On the cramping: Recently I had trouble for a few weeks with lower leg cramping with one that felt like a shin splint & yet the more I walked the more it would cramp up and I would have trouble walking smoothly if I tried to walk fast, esp. I needed to walk fast & smooth for some work coming up, and was concerned about what to do about it, and tried carisoprodol (soma) at night & woke up without the problem returning till that eve & then it faded away. I got this med for general crampiness, though it may have been good in this case (or the problem was coincidentally going away) I am not usually convinced it works so well. What do you use for cramps?

Finally, it seems like you have some really knowledgeable drs on this condition -- what sort of specialists have you found best for your condition and what departments do you find them? I think I could have something similar though imagine there are a number of similar problems. I never had extensive immune tests and have not seen an immunologist or neuroimmunologist --I did not know such a subspecialty existed.

Thanks!

Wintersweet

Hi Lynn,

Thanks for your comments.
Regarding the anitmyelin, I just wondered if Lyme might give that result and if you have been tested for CNS lyme or if you've had a spinal tap to help figure things out.

Regarding migraines, I have had them since I was a kid. There are periods of time when they have been more frequent and periods of less frequency. I think this is due to a great variety of factors, from physiological to psychological stressors. Migraines are very impacting on ones life when they are frequent, and are not to be underestimated in the havoc they can wreak !They are also associated with many odd sx and lots can be potentially explained with migraines. Managing them can be complicated --right now I have several headaches a week, and I often awake to them.

As you noted you are new to them, among your considerations, take a look at:
1. Are you taking any drugs for your conditions? This would be the most obvious thought to me since you noted muscle relaxers earlier I believe. I do know of someone who had a migraine continuously for over a year with heart arrythmias due to a changed HBP drug though this possiblity was persistently denied by her doctor.
2. Check out known migraine triggers and evaluate each carefully.

I treat depending on the severity of the migraine. I find the triptan drugs helpful but they make me drowsy and can irritate. You can only take them 2x a week. Mild headaches can be helped with ibuprofen, or most of the time, I just leave them untreated. But do drink water as soon as one is coming on, and take off anything on your head or hair--I have found these moves might help sometimes. I have a number system for my migraines, 1 to 10, and it helps to give it a number. I find I can work through anything up to a "3" but then things can get difficult.

I have a special strategy with a severe migraine with bad headache, vomitting, imbalance, intolerance to various stimuli, and overlaid with some piercing head pains. It may increase my sense of head pressure and pain to lie down, so I try to stay up, even if dizzy. I briefly tell my family what is going on. Then I just try to walk, coach myself to go ahead and put one foot in front of the other--set a goal --walk to a post and back. Focus on each step and remind yourself that nothing lasts forever. At this point, I am beyond the ability to drive, or do anything, and telling the family is important in case they need to take you to the ER in case there are other signs which might indicate a stroke instead of a migraine --and I think this could be hard to distinguish even in an ER.

Hope this helps

Lynn2

Abe,
Thanks so much for your helpful info. I was afraid it would come down to THE Mayo or Cleveland. No one else seems to be abl to diagnose these difficult disorders. I will post when I am able to get more answers. I am so glad you were able to get a good diagnosis after so many years!
Take care,
Lynn

Lynn2

Wintersweet,
I have been tested for Lyme and it was negative twice. Thanks for the migraine tips.
The only over the counter med. that can touch my migraines is Excedrin Migraine. Advil, Motrin, etc.. do not help at all. I am trying to not take prescribed meds. for as long as I can.
Mainly, I just feel nauseous with vision/hearing problems along with the pain. Lying down in a dark and quiet room is great. Sleep is better. I have a slight one today or could be the beginning of a few days! I once had one for days.
I will let you know if I find anything else helpful!
Thanks,
Lynn

plummer_jan

I would like to recommend a physcian to see. In Augusta GA at the Medical College of Georgia: Kapil Sethi, MD Neurologist I think he could help you if you are still seeking help.

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