Symptoms -  "jerking" of legs.....sleepless nights (985 views) Notify me whenever anyone posts in this discussion.Subscribe
 
From: ChristianeH7/19/12 7:47 AM 
To: All  (1 of 15) 
 1489.1 

Endless sleepless is what one can sum my life up to at the moment....this rythmic jerking of usually my left leg (the weaker one) was my first 'serious' symptom 13 years ago...after many years of sketchy sleep i finally found a doctor that at least found a muscle relaxer i could actually take (dantrolene) i happen to be allergic to most of the others and it saved my sanity as it just switched the legs 'off' and i finally had nights of peaceful sleep.

fast forward to about a month ago..its back and worse....i had these so bad in the past that i actually tore an achilles tendon doing this. i been up for 48 hours now...would not call it concious :/...had 3 1/2 hours of sleep in the last 3 days...anyone else living this hell or at least familiar with it? i truly understand why sleepdeprivation is such efficient torture

 
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From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host7/21/12 3:24 PM 
To: ChristianeH  (2 of 15) 
 1489.2 in reply to 1489.1 

Christine, I have literally "felt your pain". The drug you are being treated with is primarily for muscle spasticity. My neurologist actually told me off (gently) for calling my symptoms that. I had myoclonic jerks after 8 years on Neurontin (gabopentin)for neuropathic pain from some spinal damage after a bad fall (or from pre-diabetes, which I doubt, as I had no other symptoms for 12 years and the pain started right after the injury. These were flailing of my good arm and both legs at night and head jerking when I was up (I thought I was getting Parkinson's). Since he said that it was used for this problem he tried to put me back on a lower dose, which started the jerking up again). Actually, this is listed as a side effect of Neurontin, which my medical doc knew (which is why he took me off of it)(I know I'm using a lot of ()'s, but I hope you can follow me).
Finally the Neuro checked me out for everything else which might cause the symptoms, since Post-Polio Syndrome can only really be diagnosed by exclusion--there are other things which can cause similar symptoms, I'm not sure that there are things that cause the cluster of things we experience, as we found out the hard way after one of our members died of cancer when her pain was blamed on PPS until it was too late. I had a brain MRI for the first time which actually showed damage in all of the places that Polio encephalitis causes--what was often referred to the "bulbar" part of the brain. The radiologist didn't see the Polio in the history of the request. After the Neuro doc called him, he said it was from a "bad" case of Polio. The encephalitis part refers to the brain (some experts say that all paralytic and some non-paralitic polio was actually Polio encephalitis). Bulbar refers to any mass shaped like a bulb, most often a tulip bulb (see Mirriam Webster Dictionary). "Bulbar poliomyelitis results from viral attack on the medulla (bulb of the brain) or higher brain centers, with respiratory, vasomotor, facial, palatal, or pharyngeal disturbances." (http://encyclopedia2.thefreedictionary.com/bulbar+poliomyelitis).

An excellent (but possibly a bit dated) article can be found at: http://www.poliosurvivorsnetwork.org.uk/archive/lincolnshire/library/harvest/enceph.html . It ties PPS in with the brain damage caused by Polio. It also has a good discussion of why some folks who may have had non-paralytic polio are having PPS symptoms now. I have damage in my reticular formation which is responsible for brain arousal. Some damage can produce the "brain fatigue" many PPS folks like me suffer from. The damage to the "anterior horn cells" of the spinal cord (myelitis) causes the paralysis (which I also had--everything but my breathing stopped working, including swallowing). I "recovered" from the paralysis in all but my right arm. As the PPS symptoms show now the recovery was enough to allow function, but there was residual damage (weakness) elsewhere. I got tired out more quickly with physical activity than my peers, even in childhood. I "nodded out" (reticular formation) in college and may have done it earlier, but I don't remember. I started having brain fatigue as well as more debilitating physical fatigue in my 30's and was actually diagnosed as having PPS then (in the 1980's, when it had barely been heard of) by a physiatrist (rehabilitation doc) who was also a Polio Survivor. I've had leg cramps at night after strong physical stressors since childhood, but they didn't become frequent until my forties. After a couple of years of this I woke up in severe pain from my weaker leg seemingly trying to twist all the way around at the level of my groin. That caused damage to tendons and ligaments and I was put on 60 mg of oral Baclofen, a Skeletal muscle relaxant, 3x a day. Once the damage healed, I tried to wean off the Baclofen, had to stop at 20 mg a day or the cramps returned. 20 years later I'm back to 60 mgs with an "as needed" dose for the middle of the night if I cramp up. The article I referred you to lists a maximum dose at 80 mgs, but my current Physiatrist say we can go higher if necessary, but very carefully--I can't afford to lose much more muscle tone or I'll lose my ability to stand and walk (short distances without leg and back (SI joint pain, also from weak muscles)and be in my power chair full time.

If you haven't tried Baclofen (generic name) I'd strongly suggest it to your doc. He may not have thought of it. It's mostly used in spinal cord injuries. If you are sensitive to it there are other classes of muscle relaxants. Click on "More" under "Related Drugs: Muscle Spasm on the right side of the first page in the Baclofen article. There are several different classes of drugs listed and one may help.

Notice there is a separate section for Spasticity, which is where you'll find dantrolene. Also Baclofen, I see, so you may have tried it already. I'm glad to know there are other classes of anti spasm drugs, in case I become sensitive to it--it's been 20 years, but one never knows.

I may have given you way more info than you need, but ,as the others will tell you, I have a tendency to lecture (or ramble, which is more likely :>) ).

If none of these help let me know--I enjoy doing research.

Sally (Sara)

Edited 7/21/2012 3:32 pm ET by Sally (SARABOWLDEN)

Edited 7/21/2012 3:41 pm ET by Sally (SARABOWLDEN)

  • Edited 7/21/2012 3:42 pm ET by Sally (SARABOWLDEN)
 

 
From: janewheels7/22/12 6:33 AM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (3 of 15) 
 1489.3 in reply to 1489.2 

Hi Sally

I applaud you for doing the research you do... I enjoyed reading about the jerking that one of our members has, you too have suffered from it too.

I had no idea that polio actually damages the brain, I have epilepsy too which I know damages the brain, so these are now full proof of why I am slow at times.

Thank you so much Sally... this information helped a great deal, I just need to get the pins and needles sorted now and then I can once again forget my legs are there... I do not stand at all, you see.

Jane

 

 
From: ChristianeH7/22/12 9:00 AM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (4 of 15) 
 1489.4 in reply to 1489.2 
I suppose it is wrong to be dang near 'happy' that someone else has this problem? yet i find myself just stunned to see others have the same problems....the first year all this popped 'into full gear' so to speak (1999..july 21 to be exact..i know sounds strange but that is the day the leg jerks started out of nowhere...) i saw 19 doctors, more than half 'specialists' and well respected in their fields ..orthopedic, neurologie , psychiatry, you name it.
i was told everything from "you just need to take a warm bath and eat some chocolate" to "possible MS"
guess it WOULD have helped had i had the first clue about the polio, but as i stated in my original post that was appearently pretty much the 'family secret' until just a few weeks ago.
just re-read your post sally and since i am having a pretty good morning (although no sleep again) i read through all the links you send.
that was quite the eye opener and explains really a whole lot ...strangely enough when those symptoms started appearing in 99 i was going through a prolonged period of extreme stress (stepson was diagnosed with bi polar...he microwaved a cat out of 'boredom'need i say more?) and i think my body just finally caved.
it got to the point where i literally could not make it up my front steps anymore when i saw my then husband or stepson at the top of those stairs. it was like my limbs just refused to work.
of course the moment i mentioned that to a doctor it was 'all in my head'..even though it truly felt like a 'physical' problem. my mind was telling my legs to move and my legs just wouldnt have it, together with an almost 'pass out while standing up' fatique.
one neurologist was SURE i had MS...only to find no evidence of it on an mri (done without contrast), then he thought it may be arnold chiari (the cavus feet), then he referred me to another specialist that was like 'i know its real what you have but i have only a good guess' and he was working with...*takes deep breath to spit out my working diagnosis* "possible MS, probable HSP, possible Arnold Chiari, clinical depression and fibromyalgia"
whew..a mouthful right? that particular doctor was in st.louis, wich i now find has a pps clinic, do they not ever consider pps a possibility if you are not aware there was a history of it?
i wonder about a whole lot of things after reading these articles, and some of the posts i have read on this forum.
i will have to dig up the mri report from back then. they could not find any ms lesions i know that, however there was a 'bubble' like abnormality in my spine? i will have to find the report and will try to put in here exactly what it said, its been 12 years this was done. Is there a possibility they could maybe now see damage they could not see then especially since it was done without contrast?
it was supposed to be done with contrast but the person they send to administer it was so inept at what they where doing they actually stuck me with that needle 20 (yes twenty) times and i was in such maddening pain from that..that i finally told them wich dark area to put that needle in in their own body :P i was like out of my mind with pain wich sounds silly but i could not tolerate one more needle stick.
i used to have an extremely high threash hold for pain when these days i find myself appologizing for calling what i have "15 pain on their silly 1-10 scale"
i am sure when i see the neurologist on the 26 he will again send me for an mri ( they made a note to have an anestisiologist (sp?) do it from now on as they have a little more experience than the person they sicked on me last time :P).
i guess am also in for another EMG..(someone tell me the last one has readings that are still 'good'? lol :P)
and who knows what else o_O
wow..that was a long ramble from my end i know. i tend to write as it comes to mind. i may post a poem on here some day that i wrote its simply entitled 'pain...but you look good'...my neurologist printed it out for his fellow doctors at a pain conference and they now turned it into a sort of 'monologue ' stage play that is being shown at different pain conferences so i guess it is fairly good and hits the nail on the head. if it is ok i will share it with you guys?
hugs and thank you SO much for taking the time to read my endlessly long posts and reply so knowledgeble..it truly means the world to me at the moment! :)
you all make me smile :)
 

 
From: ChaunceydPew7/22/12 10:35 AM 
To: ChristianeH  (5 of 15) 
 1489.5 in reply to 1489.1 

Christiane, what you are experiencing can be related to several things, if there is pain associated with it, low thyroid and/or parathyroid conditions, which are evidenced by your blood calcium level however if you swim or do other resistance-type exercise that holds Calcium in the bones so to speak, so it may not show up in a serum CA test - this takes a wise Endocrinologist or Internal Medicine specialist. When any endocrine tests are done, make sure all thyroid levels are measured (TSH, T3, and autoimmune levels, etc.)and reported to you so that you understand them.

Also, common is what is termed RLS (Restless Leg Syndrome) but that too can be treated. It would help to make a diary of the symptoms over a 3-full day period and get it to your physician by email, fax or surface mail. Some people are helped by taking a "Super B Complex" that has at least 100 of B6. Don't fall for the B12 injections stuff (or oral) because they have a very highly prescribed routine that requires a doctor who knows what they are doing - it's repetitive over a define period of time.

I hope that is some help to you.

  • Edited 7/22/2012 3:19 pm ET by Sally (SARABOWLDEN)
 

 
From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host7/22/12 3:15 PM 
To: ChristianeH  (6 of 15) 
 1489.6 in reply to 1489.4 

Christiane, make sure he orders a contrast MRI (mine was) and have him warn them about the trouble starting an IV (which is how the contrast is given, at least for the last ten years). Take a copy of Dr. Holland's article to him and another for the MRI staff to give to the radiologist so he knows what he's looking at. If he sends you to a hospital based MRI they can get someone from the IV Team to put it in. You should never let one person stick you more than 3 times--actually, I don't think they are supposed to in most labs and hospitals. I'm hard to get too, or I was until I found out that being dehydrated makes it a lot harder. I get a lot of fasting tests and it never occurred to me to increase my water intake to make up for any milk or diet soda I normally drink a lot of. Several of my meds cause dehydration so I always have some liquid at hand. When I was fasting I wasn't drinking anything, and, in my case, it was what caused the problem. Now they get me the first time in most cases. So, even though you won't need to fast--increase your fluid intake the night before and in the morning. Just make sure you go to the bathroom before the test--being in an MRI with a full bladder can be miserable!

Sally

Edited 7/22/2012 3:16 pm ET by Sally (SARABOWLDEN)

  • Edited 7/22/2012 3:23 pm ET by Sally (SARABOWLDEN)
 

 
From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host7/22/12 3:20 PM 
To: ChaunceydPew  (7 of 15) 
 1489.7 in reply to 1489.5 
Sorry--I thought I was editing my response. I didn't change yours.
 

 
From: ChaunceydPew7/23/12 12:36 AM 
To: ChristianeH  (8 of 15) 
 1489.8 in reply to 1489.4 

Frankly, I would never have an EMG - we've had enough pain for a lifetime. Dr. Bruno mentions that in his book, Polio Paradox, and the article you referred to is from his libary at www.postpolioinfo.com. I'd suggest everyone read those articles and save them on their computers to send to their doctors and their dentists. I mentioned this before, too.

As we age, there will be more issues but many are the same as others experience who did not have Polio; however, those who have PPS need to be very careful about taking drugs affecting the Neuromuscular system such as all SUPPRESSANTS (i.e.: VERSED, Anticholinergic drugs, Antihistamines, etc), which impairs respiratory drive. In our PPS network we are seeing more and more people sensitive to such drug groups. And, those who have sleep problems, and/or Chronic respiratory failure due to diaphragmatic impairment from Polio such drugs must be avoided. It is important that those with PPS learn to pace themselves, learn how to meditate, and utilize active relaxation techniques for discomfort, pain, sleeplessness, and to conserve energy.

Just me

 

 
From: ChristianeH7/23/12 12:43 AM 
To: ChaunceydPew  (9 of 15) 
 1489.9 in reply to 1489.8 
the last EMG i had hurt SO bad that i certainly will remember it for the rest of my days...and like i said i am hoping i can convince him that the readings from the last one are still 'good' lol :P even though that was done 12 years ago
 

 
From: ChristianeH7/23/12 12:52 AM 
To: ChaunceydPew  (10 of 15) 
 1489.10 in reply to 1489.5 
chauncey...i had all the thyroid tests several times over and this really is way worse than restless legs. i have actually torn an achilles tendon jerking my legs. my leg will lift of the bed and literally almost hit my chin in one quick and rapid move.:/
i am taking b12 injections because at one point my b12 was at a 'panic low' together with my vit D wich was also at a panic low.
this was after i broke my hip and was basically confined to the house for a number of years...it took almost 6 month to begin healing they thought i had necrosis because it was just not doing a lot in the 'healing' department...took me 2 years to get back on my feet. i had broke of the entire humerous (sidenote...never mop hardwood floors barefoot :P)
 

 
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