Playing Basketball Again: Results?

G'day Duke11/TerryBefore I was admitted to Prince of Wales Hospital in Sydney I had no life and was suffering extreme muscle spasms & fasciculations in my calves - they were quivering like jelly and I was going downhill fast. My neck and abdomen were also in spasm and no one seemed to have any answers - I had "there is nothing wrong" from 2 previous NeurologistsAfter diagnosis I was treated with Gabapentin followed by 5 Plasma Exchanges while in hospital and 2 more after discharge - this was the first stepping stone to some sort of improvement. Next was 4 infusions over 4 weeks of MabThera which seemed to improve me further. I have been offered 3 monthly maintenance dosages of this but I'm still assessing my status. Tegretol has been another turning point - now at least I have a life - not normal - but a marked improvement thanks to the Professor and his team treating me - they are true GurusRicktSydneyAustralia

Rickt,Describe your experience with Tegretol a little more if you don't mind. How soon did you notice an improvement? What side effects have you experienced if any? How would you describe your improvement (fewer spasms/fasciculations, less intense spasms/fasciculations)? I tried to go off Klonopin which was helping with my spasms, weird muscle tension, and fasciculations but after 3 days I had to go back on. Klonopin really helps me but I want to know as much as I can about possible alternatives in case I need to make a switch.A few facts about myself: I'm a 37 year old female school teacher. I had bodywide twitching hit me in July 07 and I've had three EMGs and a muscle biopsy and no explanation of cause. I have no weakness just very bad systemic twitching, including back, neck, stomach, tongue, face, legs, arms, hands, you name it.Thanks for sharing on this board.Krackersones

KrackersonesGreetings from Australia. I started on Tegretol in May last year - first with Normal release - this gave me pretty quick relief from the the severe pain in my calvesIt was so bad the pain would bring me to tears. I changed to Controlled release about September - No side effects from either. However I know that a couple of the other patients with Isaac's who can't tolerate Tegretol.I believe Tegretol is front line for this type of condition.The relief has not been over night but I know when I look back a year ago I am improved 60% or 70% and can do things that I could not before as I was spending a lot of time in bed in pain. The fasciculations are not as strong so the stiffness is not as bad but I know they are still there. You pretty much described the locations of all my fasciculations.As for your EMG's - I had two by separate Doctors close together - the third one by my treating Doctor who picked Isaac Syndrome straight away. I am lucky that he and his team are well versed in this type of condition. If you want to email me I can send you a link with EMG results typical to Isaac's Neuromytonia. I understand that it easy to misread the EMG with this type of condition.Just on another note - three of us with Isaac syndrome diagnosed by the the same Doctor are meeting at my house in Sydney tomorrow.From what I have researched I believe this Syndrome is more wide spread that anyone realises and remains undiagnosed in many people.I certainly hope my posts helps you and many others on the boardRicktSydney Australia

Your responses are very helpful. I mistyped about the onset of my twitches. It was in July 08 not 07. I wish I had the extra year behind me but the 10 months with no weakness is still good news. I'm glad to hear that your positive response to Tegretol was substantial and fairly quick. I mentioned the drug to my neuro (Dr. Engel) and he did not seem opposed to me trying it but felt I was getting good enough response from Klonopin that he didn't see the need to change meds. The Klonopin really does help well enough for me to have a fairly decent quality of life so maybe he is right. I just keep hearing bad things about Klonopin and long term use that I want to stay on top of my other options.Regarding your EMGS, do I understand you correctly that the first two EMGs were not read as diagnostic of Isaacs? I had three EMGs by different neuros (one in August 08 and two in October 08). There were no abnormalities shown on any of them except one fasciculation on the first one. I definitely have fasciculations so whether they showed up or not on the EMG, I think this fact has to be taken as truth. Dr. Engel does seem to believe my description of symptoms but has never focused that much on Isaacs except to say that taking the VGKC antibody test may make sense but he thought it was really costly and my insurance would likely balk at paying for it. Some of my other diagnostic clues are sensory nerve conduction results in October 08 showing slow nerve conduction in 8 or 8 sensory nerves tested. A muscle biopsy showing evidence of denervation and reinervation but not of any amount that would be expected to result in any impairment. I also have bodywide tingling along with twitching. I had two very high ANA titres and tested postive for trace amounts of monoclonal gammopathy. Later tests for these antibodies were negative even though my symptoms continued. Do you have any knowledge on whether any of these other findings of mine fit in with Isaacs and/or whether Isaacs patients have high ANA titres?I am in the process of trying to get set up for another EMG. I will press the neuros I see about their knowledge of Isaacs and will make sure that this is specifically looked at during the next test.One last thing, I have been told by my neuros that my flexes are brisk. This worries me because most people with peripheral neuropathies have reduced reflex not brisk ones. Dr. Engel thinks it is not significant and is a produce of my nerves being hyperexcited. He said he has never seen this in a text book but it makes logical sense to him. Are you familiar with the role reflexes play in the diagnosis or presentation of Isaacs?I hope our greater ability to communicate with each other leads to improved understanding that benefits all of us with rare neurologic conditions. You are certainly doing your part in this effort and I really appreciate it.Krackersones

KrackersonesHello again, your medication Klonopin I think I would be concerned about the long sedation and long term addiction even though you seem to have a decent lifestyle how long can it last on this? You are pretty you so you have to look at the long run.I am going to stick my neck out here and say I think you have Isaacs/Neuromytonia/Peripheral Nerve Hyperexcitability and there are other names.Your symptoms and indications are so close to mine.Sorry I did not make it clear enough about my EMG's the first two were not read diagnostic of Isaac's by two different Doctors the third read by my now treating doctor was diagnosed as Isaacs - all three were within six weeks of each other.The antibody test - only sixty percent with Isaac's show positive so I think you could say it is questionable. I showed negative.I had regular nerve conduction studies during and after my diagnosis but there was never any discussion about the results.I am pretty certain there has never been any mention of muscle biopsy amongst us to diagnose Isaac'sI did have a Lumbar Puncture which showed indications of Autoimmune condition which Isaac's is.I am pretty certain that there was no testing of ANA titres so I can't say if this fits in with Isaac's but it does not relate to anything I have read.But I can say that I had body wide tingling and twitching like electricity running through me.Here is the link to a typical EMG indicating Isaacs....... pnseuronet.org/professionals/nmt.htmI hope I have covered everythingKind Regardsrickt

Rickt,Thanks for your quick response. I would love to have a name put to my strange strange symptoms as long as it's treatable like Isaacs. I am not surprised that your EMG readings yielded different results in such a short time span. My first two nerve conduction velocity tests were read as normal but a third done a couple of days after the second showed severe abnormalities. I had a spinal tap but it was normal. I wonder if spinal tap results can fluctuate like blood test results. I agree with your assessment on the Klonopin use given my age and it not be recommended for long term use. It makes me a little tired but I stay awake fine if I'm stimulated (teaching 35 11/12 year olds at a time is pretty stimulating). What have you been told about side effects short and long term from Tegretol use? Regarding my muscle biopsy, I think the only reason one was done is that Dr. Engle is the leading authority and researcher using muscle biopsies so he has a special interest in doing them. I didn't think it was that bad pain wise and it did provide some evidence of a problem when the EMGs did not. I wish they didn't show a problem but the up side is it forces doctors to believe me when I complain of my symptoms. They see me with normal strength and function and are otherwise suspicious without the objective proof.Krackersones

Krackersones Hello againI am more inclined to think my first first EMG readings were miss read which I understand can be common with Isaacs/Neuromytonia.Not sure about the variation in Lumbar Puncture/ Spinal Tap.I'm sure teaching 11/12 year olds keeps you on your toes.My research on Tegretol tells me it is well proven - it's been around for over 30 years - so I think it's pretty safe and no obvious side effects for me at the 12 month mark.I am positive that like others it will take me into some form of remission.I have normal strength and function but the third EMG result and my physical presentation was the pointer for my diagnosis.From what you have explained, I don't I see that there can be any suspicion.RickSydney Australia

Rickt,I did some research over the weekend on Isaacs/neuromyotonia. I came across an article that charted findings of those with the diagnosis. If my memory is correct (I didn't print it as I've got too big a collection as it is) there were five individuals with the dx who showed denervation on muscle biopsy and 8 who had a muscle biopsy who did not show evidence of denervation. Most with the dx did not have a muscle biopsy. Can you remind me again how long it took for you to notice positive improvement from the Tegretol? My biggest concern is having to go off the Klonopin to take it and then have to wait weeks to know if the Tegretol is having any effect.Krackersones

Krackersones - Greetings again.When our small group of Isaacs Suffers got together on the weekend we discussed Tegretol.One had a bad skin reactions the other had very quick pain relief but stopped taking it after about a week and a half because of tiredness and mood change.He is thinking of giving it another go.Myself, I had almost intolerable pain in my calves so the Doctor took me off Baclofen and put me on 200 mg Tegretol normal release - I had almost instant pain relief.The only symptom a bit of of tiredness that went away pretty quickly probably within a couple of days. The noticeable fasciculations mostly disappeared but I know some are still there but not as fierce. About September last year we changed to Controlled Release Tegretol 400 mg night and morning and have seen some steady improvement. Still some ups and downs but some days I have felt normal.If you have not done so already, do a search here on Tegretol you will see some good reports.There is also more compelling evidence about the benefits of Tegretol/Carbamazapine in the treatment of Isaacs /Neuromytonia.Before Tegretol I had no life, now I have some quality times.Hope this helps RicktSydney Australia

Rickt,The information you provided is invaluable. I have seen Tegretol mentioned in numerous articles about Isaacs/neuromyotonia in connection with very positive results but never felt like I was getting the detail you provided from personal experiences. Although I won't know what it can do for me until I try it, it is great to know that there is an alternative with so many success stories behind it. I also like the fact that the effects are fairly immediate. If you don't mind my asking, what aspect of the disorder (even with the Tegretol) interferes with your quality of life. For me, it is the buzzing, vibrating I get under my arms and sides of my trunk that creates such an unpleasant sensation combined with a tightness that I feel all over. It is not a tightness that prevents movement but just makes me feel really uncomfortable. When I get this sensation, I would rather be walking around than sitting still or lying down even if I'm exhausted. When I'm without medication, I also get fasciculations in places like my forearms that are actually painful. The shear amount and spectrum of all the muscle activity is just so incongruent with a sense of health, and it creates a type of anxiety that isn't so much a panic but an inability to focus on anything but the question: "What in the world is going on?" The Klonopin gets me past the horrible scenario I just described but it is always one pill away. The Klonopin doesn't make me feel "normal" just able to put the symptoms in the background. I have another neuro appointment in June and will raise the issue of Tegretol then. Given its long history, I can't see much of a risk in giving it a try especially given the huge upside that may result.Krackersones

KrackersonesI had the buzzing and vibrating you refer to however - I would describe it more like electricity running through my body mainly at the base of my skull my wife could feel it by placing her hand about and inch above my spine in my neck but it could be in other places in my body and I think it was or is electricity from an imbalance in the potassium channels. A phenomenum that nobody else would believe. I didn't believe it my self and thought I was going crazy. Thank goodness I rarely get that now. I agree about the anxiety and inability to focus but I am pretty well past that - half the battle is being diagnosed instead of fighting smoke and being told there is nothing wrong with you - it's so demeaning.What interferes with the quality of my life.? Inability to make firm plans and commitments from day to day because I don't know how I am going to be from one day to the next. Mr Isaac does his own things and worst is the pain in the calves and hips followed by the neck - no where near as bad as it was and I rarely get put right down. He seems to have hit my calves and neck because they were/are the strongest muscles in my body although he will have a go anywhere including my throat and abdomenSo I am doing things now that I could not do a year ago.RicktSydney Australia

Rickt,I really envy the firm diagnosis you have and the fact that you have seen improvement over a good stretch of time following treatment aimed at the cause thus further validating that you have a treatable condition. I am fairly optimistic about my situation but still have the frustration of doctors saying "I'm not sure what's going on" although they no longer tell me it's nothing. I will definitely be asking the neuros for more testing and a reasoned response for why they know it's not Isaacs if they think it is ruled out. I really think the bottom line for them is that I'm not that impaired objectively so they don't see much reason for doing much other than following me and speculating on what it could be. They are sympathetic about the symptoms and will be open to discuss Tegretol but whether they want to further study me or refer me to other experts to find a precise cause is another story. I think they feel the plasma exchange is too big an ordeal to put someone through who is working full time and otherwise seems ok from the outside. I see their point but do feel curious to know if it would help me and thus provide evidence that my problems are antibody/immune system related. Did you get improvement in the electrical/buzzing/vibrating/twitching phenomenon following plasma exchange even if it was short lived. I have mostly read about people getting improved strength from the treatment but I haven't lost strength so I wonder if I had it I may not know if it helped me or not.On the electrical current description, I can definitely relate to that too. I have put my hands behind my neck many times to feel the sensation. I also feel it running through my abdomen and chest when I'm half asleep sometimes. I have had what feels like electrical shocks under and on my tongue lasting for a second or two. These sensations happened right when the twitching began and I really thought I was losing my mind. Krackersones

JroYes, Diagnosis makes all the difference plus having a Doctor that does understand and sees more than what is just on the surface. He certainly does know what's going on - he is a Guru as I have said before. You certainly need a reasoned response. Because your Doctor can't see it he does not believe it. What you have explained is regularly described written and suffered you don't just make these things up.The plasma exchange is not that bad and I had 7 treatments of it. I think that is one of the reasons for my improvement there is not one single thing but the Tegretol comes close. I did get some improvement from the electrical buzzing with the plasma but not complete.No, have not lost strength, it's same as always. I do have exercise intolerance so it's pretty hard to accept after being very active and walking at least 7 km per day.No electrical shocks under the tongue they would be a shocker!! RicktSydney Australia

I hope this string of posts isn't dead yet. Sorry about coming back late. This is mainly for Rickt and Skipper (or anyone else who's interested)Rickt has said that his doctors are gurus and he seems to have tried more treatments than most of us. My neurologist isn't a guru, in fact I'm her first case of CFS/NMT. She knows I have the condition and is willing to let me try any treatments that I want. The question is "What do I try next?" I've tried Carbamazapine (gained about 30% functionality), switched to Gabapentin (improved to about 60% functionality), added Lamactil (about 70% funtionality), added lots of benzos and SSRI drugs -- including Klonopin. I kept switching the benzos and SSRI drugs trying to find ones that wouldn't make me foggy in the head. Eventually I settled on baclofen and amytriptiline, along with the Gabapentin and Lamactil. I now have about 80% functionality -- no sprinting or repetitive jumping -- but I can do most everything else to some degree.So, what do I try next? I have another appointment with my neuro in July. Like I said, she's willing to let me try anything so who has some advice on the next thing to try? Understand up front that I do tai chi and qigong, lots of stretching, a healthy & organic diet, etc. Maybe I should just be satisfied with 80%, but I want to get the absolute most that I can get because physical activity and sports are a major part of my life.So what do I try next?

Duke11,Rickt recently told me he was taking a five week vacation and wouldn't be posting for while. I'm sure he will respond when he gets back. I am also interested in what treatments/meds are worth trying. Your listing of medications and their effectiveness is very helpful since I've only tried Klonopin but wonder if something else might be better. It is hard like you said to not want to be 100% if that is possible even if you need meds to get there. I hope you don't mind repeating yourself since I'm sure you shared this in other posts, but I was wondering what aspects of your symptoms are relieved by the meds you have tried. My issues don't involve muscle strength but actual discomfort from the twitching/fasciculating/vibrating and some weird tightness feeling in my underarm/trunk area. The Klonopin keeps this at bay so I can feel ok but not normal. I think it is important to specify what type of symptom relief you are looking for and which meds helped which symptoms since we all seem to be bothered differently by our nerve hyperexciteability. I will bring your list of meds to my next appointment and see what my neuros say about them. I unfortunately don't have a clear dx but I will keep pressing for one. I think none of us has a clear dx to the extent we don't know the cause of our symptoms. I keep wanting to do more to find the cause so I can target the treatment better. The idea of getting at the cause tempts me to try immunosuppressive drugs/treatments like plasma exchange or prednisone because if they work that would clue me in on the cause. The down side to this info on the possible cause is the risk involved and the expense and ordeal of plasma exchange.Krackersones

Wow. I've been looking for advice and experiences from other people, never realizing that someone might want to know about my experiences. Thanks Krackersones. Actually, I guess I do have some things to share since I have tried many drug combinations and many other treatments. I've kept a fairly detailed document of the different meds and treatments that I've tried over the last couple of years and their effectiveness, etc. I'm not going to include all of that here, but I'm going to send a pdf attachment of it to you as a Personal Message. I hope it is helpful. I'm willing to send it to anyone else who's interested as well. Here is a brief answer to your question, though, starting with my symptoms.1. My legs were either asleep, tingling with pins and needles or burning 100% of the time. Fasciculations too but those didn't bother me.2. My leg muscles were horribly stiff and prone to cramping and tearing. This was my version of exercise intollerance.3. I was extremely anxious and panicky about my condition and had lots of trouble falling asleep and staying asleep, all of which made the symptoms worse.So the meds that helped are pretty easy to connect up with the symptoms. The two anti-epileptic drugs (Gabapentin & Lamactil) basically eliminated the tingling, pins & needles and burning. They also helped with the stiffness, cramping and tearing.The muscle relaxant (baclofen) further helped the stiffness, cramping and tearing so that my legs feel almost normal all the time.The final drug (Amytriptyline) which is an SNRI helped with the anxiety and sleeping.I'll end it there but thanks for your post.~Duke11 (Duke basketball fan by the way)

Duke11,I'll wait for your additional document since I'm sure a lot of what I'm wondering about is in that, but it seems from your last reply that your symptoms are limited to your legs. Is that correct? I guess fasciculations would be less bothersome in an area if you were getting lots of cramping. I have a hard time characterizing the weird tightness I get in my trunk and underarm area. I have sometimes used the word stiffness but I don't think that is accurate. It is not like I can't move the muscles easily. It's just that I feel tense in those areas and it makes me really uncomfortable even when my mind is totally relaxed. It's like my mind and body are not connected.Krackersones

Rickt,Glad to see you back. I hope you had a great time on your trip. I just had another round of blood tests yesterday but am otherwise just rolling with life despite the symptoms. Krackersones

I never notice because I train 5 tmes a week and dont know what a day without muscle soreness would feel like.

OK - getting back to the original post with the muscle tightness problem and how to deal with it - I found this article online a while ago and it should be of use to those of you who have very tense muscles. Basically, it demonstrates a few muscle release techniques that really work if you do them correctly - it's been helpful to me and I've tried in on several friends, active and sedentary. For those of you into taiji and qigong, meridians, acupuncture, or any oriental holistic medicine you will notice the similarities in the pressure points used, etc. PLUS attention girls - the photos of really buff guys is a side benefit. Go to this site and click the here! and you get a scanned version of this guy's magazine article with pictures. Still haven't downloaded the whole book of techniques - maybe this weekend.......The link:Let me know if it works for you - if you try it - or if I should totally give up on posting info on practical coping techniques.