My Story (Very long, but meant to help)

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Postby Angie on November 16th, 2007, 12:00 am

I understand your points Nancy and they are stated very well. My concern has been that as a somewhat rare condition, many doctors are more prone to using 'anxiety' as a reason for the symptoms we have when for many of us that is not the reason. That is historically the case in medicine from Chronic Fatigue Syndrome to Epilepsy to Arthritis and the list could go on. If we go too far down the anxiety route ourselves here my concern has been:

1) People's symptoms are not being taken seriously and not being treated. This causes unnecessary suffering in my opinion.

2) There will never be a full understanding of this condition as a having a potential autoimmune cause for a number of us and why so many other autoimmune conditions are suffered here by so many other people.

3) I see people say "My doctor said it was anxiety" and then they come back months or years later with muscle stiffness and other progressive symptoms that take them by surprise because their illness was never fully explained or explored and they are scared again.

I think Kevin is pushing the anxiety explanation too hard and with not enough real research behind it. If we are going to have a real discussion on possible symptoms and cures, I'd like to see some facts behind the explanations other than one person saying they were cured by dealing with anxiety. This discussion is very unscientific and unproductive I think.

This condition is confusing and I know there are many causes, but no one is really going to be helped by convincing themselves of something that isn't true when many of us have to live with the repercussions of this syndrome everyday. I'm tired, I limp now, I twitch everyday unless I’m on medications and I can also have very painful cramps. I see the science behind it. I've researched it and when someone who hasn't researched it tells me it is all due to anxiety, I find insulting.

Unless someone has real research to support that anxiety can cause muscle stiffness, cramping, twitching, fatigue and exercise intolerance, it's really just theoretical guessing and not helpful to the people that are really suffering from this medical condition. Knowledge is the cure for fear.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Angie on November 16th, 2007, 12:04 am

And Steve has done more to further the cause of research and knowledge for this condition than anyone I have ever met-including my doctors. So, don't ever put Steve down Lucy, especially if you haven't even bothered to look at the website he created and the research he gives us access to that has helped so many of us deal with this condition.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby kevintwister on November 16th, 2007, 12:49 am

alive and twitching wrote:No matter how many extensive fake lists of symtpoms Kevin comes up with, no one can refute the science behind the studies that have been done over a number or decades and the evidence they turned up. Have you even seen a neurologist?


You're accusing me of listing fake symptoms?? How dare you! Ma'am, you have NO idea the hell I have been through. Every FREAKING symptom I have listed was REAL. My wife just flipped reading this and is wanting to jump into this but I won't let her. What purpose would I have to come on here and make this stuff up? This is crazy.

Neurologist? Yes, saw him twice! The second time he looked at me like didn't "you believe me the first time?". BOTH times he told me I probably had anxiety and to work on that. My GP told me that. Two doctors I saw in the ER told me that. Every therapists which was 3 all told me the same. Fortunately the last one really knew how to really explain an anxiety disorder and the SCIENCE behind it so as to get it through my stubborn head that I DID NOT have some rare neuro disease despite my initial insistance that I did.

You think ALL of those professionals were just blowing me off by saying it was anxiety? You don't think anxiety is a real or serious condition? You obviously don't understand anxiety and how it effects the body.

So you are anxious that doctors label too many things anxiety and don't search for the "real" causes? I think the exact opposite. They tend to label too many things and create "syndromes" out of certain anxiety symptoms and throw pills at everything. Pills, pills, pills, $$$. Of course they never know the "real" cause when in reality a lot of these things are disorders of the central nervous system because the CNS is erratic due to our bad habits and fast paced lifestyles. Change the habits, the CNS calms down, the symptoms fade. Miracle cure? No, it's just biology.

Some of you folks have some serious issues here. That's obvious. The way some of you are reacting is quite bizarre and actually "anxious". You may never admit it but it is staring you right in the face.

I will now leave you to your board. Sorry I ruined the party with my success story. It's quite obvious now that many of you don't want to hear any of those. Man, this is bizarre.
Former BFSer, here to help. BFSymptoms (not a syndrome) are symptoms of nervous system overstimulation. Got my life back thanks to those fine folks at anxietycentre.com whom taught everything I know about this condition.
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Postby Nancy on November 16th, 2007, 12:51 am

Angie: Anxiety would be no reason to shrug off any patient's complaints. It can incur incredible suffering and huge financial, emotional, social and physical costs. It is taken seriously by any sound health professional. Although I understand some folks will see such a diagnosis as a dismissal or interpret it to mean "it is all in my head", it is not necessarily what the physician is saying or means. I get this from chronic pain patients who are referred for psychological services on a regular basis. No one is saying the pain or symptoms are not real. Secondly, even when anxiety is found to account for much of what a person is experiencing in physical symptoms, the "cure" or remedy is mainly multi-faceted...just as anxiety itself is.

As for diseases that are auto-immune related...some are more understood than others. I suppose we will have to wait a loooooong time for much help with BFS when there are other more disabling and life-threatening autoimmune illnesses to tackle with limited research dollars. This may not feel fair but it is the way it is. I put some hope into such centers of research like the one referenced recently (in St. Louis?) that is focused on motor neuron communication and disorders. Even if BFS is not the main focus of research, related findings may help add to our understanding of this phenomena and aid us in knowing best how to manage the symptoms.

I don't understand why Kevin is treated so differently than the person that posts that they found relief of their symptoms with supplements, chiropractic or avoiding caffeine. He is a "true believer" in his own experience and actually may have something to offer. Why write him off more quickly than others? Because he feels intensely about his outcome? I don't see any less intensity in his beliefs than I do in your own beliefs about your condition, to be honest. You may have seen some folks come and go like Kevin...but apparently he has worked with someone who resolved this and never had a recurrence in something like 30 years (I hope I am remembering that right).

Angie, there is research to support the benefits of certain psychological techniques for anxiety-related conditions. Checkout any number of psychological research journals and you will find it. As for psychotherapy or "coaching" people with symptoms of BFS?...I doubt there is any more research than what medical journals have to offer. So why write it off? Why not check it out and see if it can reduce your suffering if not eradicate completely your symptoms? The anxiety centre site boasts 90% (or more) effectiveness and I share your skepticism on a number of levels...this is quite unheard of, actually. They don't quote...at least from what I have seen, statistics and methodology on how they derive this number. But I also won't discount a series of single case studies (via the testimonials of customers like Kevin) that suggest that there could be some help in managing or eradicating BFS symptoms out of hand. Aymore than I would the guy who said magnesium helped them. Or that neurontin helped them. Or cidar vinegar.

There actually is all sorts of research that connects muscle tension and stiffness to anxiety...it is an actual symptom of anxiety! But to get the diagnosis of an anxiety disorder, you need more than one or two symptoms. There is also all sorts of research that documents psychotherapy techniques can help reduce such symptoms. How would such research be unhelpful?

I understand that you wish to protect folks here from getting "false hopes" but for every person you have seen return here with a relapse, how many more never come back because they remained symptom free? You would never know. And how many who found a "cure" never came here in the first place? There is no research to back up any "treatment" right now. We are just a bunch of single case studies who might have something useful for one another if we each keep an open mind and avoid getting reactive. Try it and if it works, keep doing it. If it does not help, discard it and move on.
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Postby Angie on November 16th, 2007, 8:34 am

Kevin, that anxiety list is way too long. Most people have experiened many of those various emotions throughout their lifetime and for me, it does not explain BFS/BCFS/PNH. I'm glad if you think that dealing with your anxiety cured you. That's great. Unfortunately, most people here who have widespread twitching, muscle stiffness, fatigue, exercise intolerance, and some of the other symptoms that define our condition, won't experience that because there is a probable medical cause for many of us and most people, from what I have heard for the time I have been on this forum, deal with symptoms for the rest of their life because of it. Below are just a portion of the studies that have been done on this medical condition. I am sorry to have come across as insulting to you, but I want to deal with real scientific information, not hypotheticals and I think the list is not helpful.

Nancy, I think it's giving out false hope that has no real basis in fact to say that anxiety causes this condition for many of the people who come here. I also thinks it keeps people with a real medical condition from being treated appropriately in a medical setting. Below are some studies, the results of the studies and treatments that have helped people with this condition for whom it is a real medical issue. This is only a small sampling of exerpts. I could have kept going. You will find there is an overlap in the benign neurological conditions studied, but that there are treatments available to help people if they and their doctor are educated enough about this condition to know about them. Most of this you can find on pubmed.gov


Ned Tijdschr Geneeskd. 1996 Aug 10;140(32):1655-8.Links
[Muscle cramps and fasciculations not always ominous: muscle cramp-fasciculation syndrome]
[Article in Dutch]
Vos PE, Wokke JH.
Academisch Ziekenhuis, Afd. Neurologie, Utrecht.
In three patients, men of 43, 44 and 55 years old with muscle cramps, fasciculations and easy fatiguability of muscles, cramp-fasciculation syndrome was diagnosed. This is a benign disorder which has to be differentiated from amyotrophic lateral sclerosis. Response to treatment (benzodiazepines or carbamazepine) is good.PMID: 8815407 [PubMed - indexed for MEDLINE]

Serrao M, Cardinali P, Rossi P, Parisi L, Tramutoli R, Pierelli F.
A case of myokymia-cramp syndrome successfully treated with gabapentin.
Acta Neurol Scand. 1998 Dec;98(6):458-60.
PMID: 9875627 [PubMed - indexed for MEDLINE
Brain, Vol. 125, No. 8, 1887-1895, August 2002
© 2002 Guarantors of Brain

Neurology. 1998 May;50(5):1483-5.Links
Antibodies to ion-channel proteins in thymoma with myasthenia, neuromyotonia, and peripheral neuropathy.
Heidenreich F, Vincent A.
Department of Neurology, Heinrich-Heine University, Düsseldorf, Germany.
A patient presented with anti-acetylcholine receptor antibody-positive myasthenia gravis. After removal of a thymoma and use of cytotoxic therapy, there was worsening of myasthenia, onset of muscle stiffness and hyperexcitability, and electrophysiologic signs of peripheral neuropathy. Elevated serum titers of antibodies to neuronal voltage-gated K+ channels were present, consistent with neuromyotonia (Isaacs' syndrome). A beneficial response to treatment paralleled changes in antibody titers.
PMID: 9596015 [PubMed - indexed for MEDLINE]

Muscle Nerve. 1994 Sep;17(9):1065-7.Links
Myokymia-cramp syndrome: evidence of hyperexcitable peripheral nerve.
Smith KK, Claussen G, Fesenmeier JT, Oh SJ.
Department of Neurology, University of Alabama at Birmingham 35294.
PMID: 8065395 [PubMed - indexed for MEDLINE]

Neurology. 1991 Jul;41(7):1021-4.Links
Comment in:
Neurology. 1992 Feb;42(2):466.
Neurology. 1992 Sep;42(9):1846-7.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Tahmoush AJ, Alonso RJ, Tahmoush GP, Heiman-Patterson TD.
Department of Neurology, Thomas Jefferson University, Philadelphia, PA 19107.
We report nine patients with muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyperexcitability. Neurologic examination showed calf fasciculations in seven, quadriceps myokymia in two, and deltoid myokymia in one patient. Two patients had mild increase in serum creatine kinase. Muscle biopsy showed either no abnormality (three patients) or mild neurogenic changes (four patients). Fasciculations were the only abnormality on routine electrodiagnostic studies. Supramaximal stimulation of the median, ulnar, peroneal, and posterior tibial nerves at frequencies of 0.5, 1, 2, and 5 Hz produced showers of electrical potentials following the M response in at least one nerve. In three patients, the fasciculations and evoked electrical potentials were abolished by regional application of curare but not nerve block. Carbamazepine therapy caused moderate-to-marked reduction of symptoms and nerve hyperexcitability. We designate this hyperexcitable peripheral nerve disorder as the "cramp-fasciculation syndrome."
PMID: 1648679 [PubMed - indexed for MEDLINE]

Johns Hopkins Med J. 1976 Dec;139 SUPPL:49-60.Links
Autonomous peripheral nerve activity causing generalized muscle stiffness and fasciculations: report of a case with physiological, pharmacological, and morphological observations.Harik SI, Baraka AS, Tomeh GF, Mire-Salman J, Kronful Z, Afifi AK.
A 14-year-old boy with generalized muscle weakness, stiffness and fasciculations associated with profuse and continuous electromyographic (EMG) activity is described. The spontaneous mechanical and electrical muscle activity was unaffected by sleep, general anesthesia, or spinal anesthesia but was abolished by small doses of curare, succinyl-choline, and gallamine. Proximal and distal peripheral nerve block caused moderate and marked reduction of EMG activity, respectively, thus indicating that the disorder is due to autonomous peripheral nerve activity. The delayed motor nerve conduction velocities and the structural abnormalities seen in some of the myelin sheaths by light and electron microscopic studies on sural nerve biopsy preparations constitute further evidence that the peripheral nerve is the site of abnormality in this disorder. Diphenyl hydantoin and carbamazepine maintenance therapy produced adequate clinical relief.PMID: 189112 [PubMed - indexed for MEDLINE]

: J Neurol Neurosurg Psychiatry. 1998 Feb;64(2):256-8. Links
Continuous muscle fibre activity: a case treated with acetazolamide.
Celebisoy N, Colakoglu Z, Akbaba Y, Yüceyar N.
Ege University, Faculty of Medicine, Department of Neurology, Bornova, Izmir, Turkey.
A case is reported of the continuous muscle fibre activity syndrome, which includes a group of disorders characterised by sustained motor unit activity due to hyperactivity of peripheral nerve motor axons. In this patient the muscle stiffness and myokymic movements were successfully treated with acetazolamide, which acts as a membrane stabiliser either by blockade of chloride and bicarbonate membrane transport or by producing kaliuresis and raising the transmembrane potential by decreasing extracellular potassium.PMID: 9489543 [PubMed - indexed for MEDLINE]

Ann Neurol. 1997 Feb;41(2):238-46.Links
Autoantibodies detected to expressed K+ channels are implicated in neuromyotonia.
Hart IK, Waters C, Vincent A, Newland C, Beeson D, Pongs O, Morris C, Newsom-Davis J.
Neurosciences Group, Institute of Molecular Medicine, John Radcliffe Hospital, Oxford, United Kingdom.
Antibody-mediated autoimmunity underlies a diverse range of disorders, particularly in the nervous system where the extracellular domains of ion channels and receptors are especially vulnerable targets. We present here a novel means of detecting autoantibodies where the genes of the suspected target proteins are known, and use it to detect specific autoantibodies in acquired neuromyotonia (Isaacs' syndrome), a disorder characterized by hyperexcitable motor nerves and sometimes by central abnormalities. We expressed different human brain voltage-gated potassium channels in Xenopus oocytes by injecting the relevant alpha-subunit complementary RNA, and detected antibody binding by immunohistochemistry on frozen sections. Antibodies were detected to one or more human brain voltage-gated potassium channel in 12 of 12 neuromyotonia patients and none of 18 control subjects. The results establish neuromyotonia as a new antibody-mediated channelopathy and indicate the investigative potential of this molecular immunohistochemical assay.
PMID: 9029073 [PubMed - indexed for MEDLINE]

Muscle Nerve. 1997 Mar;20(3):299-305.3.0.CO;2-6" target=_blank3.0.CO;2-6" target=_blank
Antibodies to potassium channels of PC12 in serum of Isaacs' syndrome: Western blot and immunohistochemical studies.
Arimura K, Watanabe O, Kitajima I, Suehara M, Minato S, Sonoda Y, Higuchi I, Takenaga S, Maruyama I, Osame M.
Third Department of Internal Medicine, Kagoshima University School of Medicine, Sakuragaoka, Japan.
We investigated the pathophysiology of nerve hyperexcitability in a patient with Isaacs' syndrome, who had typical clinical and electromyographic features and responded to plasma exchange. Immunoblotting and immunohistochemistry studies showed that antibodies from this patient reacted with the lysate of a neuronal cell line (PC12). In Western blots, constituents of the patient's serum, particularly immunoglobulin M, reacted with proteins of approximately 50 and 18 kDa, whereas the control serum did not. A cross-linking study with alpha-dendrotoxin (7 kDa) showed a 57 kDa protein-peptide complex. Immunohistochemistry showed that the patient's serum reacted with PC12 cells and human intramuscular nerve axons. Our findings indicate that in Isaac's syndrome nerve hyperexcitability is the result of the immunological involvement of the voltage-dependent potassium channels located along the distal motor nerve or at the nerve terminal.
PMID: 9052808 [PubMed - indexed for MEDLINE]

Phenotypic variants of autoimmune peripheral nerve hyperexcitability
Ian K. Hart1, Paul Maddison2, John Newsom-Davis2, Angela Vincent2 and Kerry R. Mills3
1 Neuroimmunology Group, University Department of Neurological Science, Walton Centre, Liverpool, 2 University Department of Clinical Neurology, Institute of Molecular Medicine, Oxford, 3 Department of Neurophysiology, King’s College Hospital, London, UK
Correspondence to: P. Maddison, Neurology Department, Royal Victoria Infirmary, Newcastle upon Tyne NE1 4LP, UK
We found raised titres (=" src="/math/ge.gif" border=0100 pmol/l) of serum VGKC antibodies in 15 out of 39 (38%) of group A patients and five out of 18 (28%) of group B patients tested (Fig. 2)
Although overall only 35% of patients had raised VGKC antibody titres detected by the 125I--dendrotoxin immunoprecipitation assay, this is likely to be an underestimate. We have previously discussed the relative insensitivity of this assay compared with a molecular-immunohistochemical assay that detects serum binding to frozen sections of Xenopus oocytes injected beforehand with cRNA for an individual VGKC subunit (Hart et al., 1997).
This finding emphasizes that acquired nerve hyperexcitability is not a single disease process, but a response to peripheral nerve dysfunction or damage arising from several different causes


Dr I.Hart. Senior lecturer in Neurology.
The study title is. "Characterization of autoantibodies associated with peripheral nerve hyperexcitability (PNH)".
This involves the study of the immune system in conditions causing muscle twitching and cramps. It is known that in many patients with PNH the cause is a problem with the immune system which, instead of protecting the body as it should do when functioning normally starts to produce antibodies that bind to parts of the nerve called potassium channels. This results in muscle overactivity causing twitching and cramps. The present tests however, only detect these antibodies in about 40% of patients. The aim of this study is to try to identify whether other, different antibodies can cause PNH and to analyse how these antibodies interfere with nerve function.


Muscle Nerve. 2007 Jul 18; [Epub ahead of print] Links
Interspike interval analysis in a patient with peripheral nerve hyperexcitability and potassium channel antibodies.
Kleine BU, Stegeman DF, Drost G, Zwarts MJ.
Department of Clinical Neurophysiology, Radboud University Nijmegen Medical Centre, P.O. Box 9101, 6500HB Nijmegen, The Netherlands.
Neuromyotonia or Isaacs' syndrome is a rare peripheral nerve hyperexcitability disorder caused by antibodies against potassium channels of myelinated axons. We present the high-density surface electromyographic (EMG) recordings of a patient with fasciculations and cramps due to neuromyotonia. To characterize the time course of hyperexcitability, we analyzed the interspike intervals (ISIs) between fasciculation potentials, doublet, and multiplet discharges. ISI duration increased within each burst. The ISI histograms found can be explained by the recovery cycle of the myelinated axon and its dependency on the slow potassium conductance. We conclude that ISI analysis is a useful tool to understand the membrane dynamics underlying abnormal motor unit activity. Muscle Nerve, 2007.
PMID: 17636480 [PubMed - as supplied by publisher]


Neurology. 2005 Oct 25;65:1330-1. Links
Sensory symptoms in acquired neuromyotonia.
Herskovitz S, Song H, Cozien D, Scelsa SN.
Department of Neurology, Montefiore Medical Center, Albert Einstein College of Medicine, Bronx, NY, USA. [email protected]
PMID: 16247076 [PubMed - indexed for MEDLINE]

J Child Neurol. 1999 Jan;14(1):41-3.Links
Autoimmune syndromes at the neuromuscular junction.
Newsom-Davis J.
University of Oxford, United Kingdom.
PMID: 10223852 [PubMed - indexed for MEDLINE]

Newsom-Davis J.
Autoimmune neuromyotonia (Isaacs' syndrome): an antibody-mediated potassium channelopathy.
Ann N Y Acad Sci. 1997 Dec 19;835:111-9. Review. No abstract available.
PMID: 9616766 [PubMed - indexed for MEDLINE]
Last edited by Angie on November 16th, 2007, 12:36 pm, edited 3 times in total.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby j7m on November 16th, 2007, 9:22 am

Obviously what's good for the goose is not necessarily good for the gander. There are many paths that lead to BFS/BCFS, and many paths that lead to relief. Kevin is just pointing out one of them.

Diagnosis and treatments are going to vary for each individual, and I think we can all agree that medicine will only be able to treat the symptoms and not the cause until the days of gene therapy and personalized medicine come to light. Until then we will have to grin and bare it...each in our own way through medicine or CBT or all the other relief remedies posted throughout the forum.

Angie, out of curiosity, how long ago did you receive your diagnosis of an autoimmune? Is this backed by diagnostic tools (bloodwork, assays, etc) or was this a diagnosis of exclusion? Also, did they prescribe immuno-suppressants, anti-noninflammatory, or relief meds?
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Postby stevepaul on November 16th, 2007, 9:36 am

Lucy, I keep my replies short for the benefit of people like you. I don't want to go from A to B via Z. I mentioned above that when I had clinical depression it didn't affect my symptoms. I don't know how I can pad this out any more. If you took this to mean that I was some authority on this, that's your fault not mine.

Right. You brought up the topic of Isaac's suggesting it was not benign and it's association with cancer. I corrected you on this given that you used question marks. I said that like BFS Isaac's is not a disease. I tried to emphasise this point by saying I have Isaac's. I then went on to say that autoimmune PNH is not a serious disorder, or any reason for concern.

Recently I replied to a post about axonal neuropathy, saying how it can cause the symptoms of BFS Then you have the audacity to say that my replies are not very reassuring, or informative, just what do you want from me.

I have never claimed to be an authority on this disorder as for as I'm aware and I have no medical credentials either. But I do have a degree of common sense. Neither have I conducted any clinical trials. However, I am one of the patients in an ongoing study by some dude called Hart, and his colleagues, therefore I have access to a little info that is not yet available to others, but in no way does this make me an authority.

I hope you noticed the word colleagues as these studies involve other neuro's, so if people want to take a poke please include all those involved. Hart was just the neuro who published the study. While you're at it include neuro's from the US because their research turned up similar findings. I once asked this dude about BFS, because it's not actually mentioned in the studies. It was his opinion that there would be some cases of BFS that are completely idiopathic. So maybe anxiety is a possible explanation. I fully intend to get his opinion on this when I see him in February.

Lucy, and others, presumably when you took the test at the anxiety centre it suggested you had some issues, so I sincerely recommend that you join, if you haven't done so already. When I took the test, according to them I had no problems, but I knew that before I took it. Then again apparently you can have anxiety and not know it. I just can't seem to win.

The problem I have with the anxiety centre is money. Why charge people just to become a member, by all means charge the $55 p/hr for personal coaching, but not for joining. The other problem I have is testimonials, have them in the members area but not on the outside, I just see them as a seduction.

Should I choose I could add testimonials from the public, upto and including Professor in neurology to the site I run. Nevertheless I choose not to as I think it would be pretentious of me, suggesting I am more important and out to impress.
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Postby stevepaul on November 16th, 2007, 9:58 am

Angie,

I know you meant well, and I hope you don't take this the wrong way, but I find it embarrassing when people feel the need to defend me. What some people think about me I know not and care even less.

Steve.
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Postby Richard on November 16th, 2007, 10:34 am

You know it really hurts me when topics turn like this.

I get on this board for some encouragement and to try to give others encouragement.

Now I think healthy debate is very important and it can even lead to better ideas. But then sometimes somebody takes it personally, or somebody either means to or by mistake makes a personal attack.

I for one am very interested in this topic. But reading this stuff gives me a downer.

-Richard
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Postby Angie on November 16th, 2007, 10:48 am

Sorry Steve, but I consider you a friend and the instinct to defend just can't be helped. I will try to refrain from doing so in the future however at your request. You are the one person who gave me hope and sanity during a time of extreme confusion and pain, so you may just have to deal with the consequences of that. I will try to control myself however.

j7m, my neurologist said that unless you are part of a study, they do not typically test for the antibodies that would indicate autoimmunity as a cause, as is suggested by the recent studies. Unfortunately, this condition is largely based on the exclusion of other neurological conditions, though I did recieve a BFS diagnosis based on visiable fascicualtions during a neurological examination some time ago. My new neurologist has me on 300mg of Neurontin 1 tablet 4 x a day and also valium as a muscle relaxant. The painful cramping in my foot has stopped and the twitching is way down, except when I get sick. Instictually I know based on all I've heard, read and studied,an that what I have is most likely autoimmune condition, but there is no one test to pinpoint that for the majority of us so that remains a problem.

I would never be one to minimalize the mind-body connection and all the mystery therein, but I don't want anyone who has a medcial condition to not get treated because we feel anxious about the symptoms and then the doctor doesn't take the symptoms seriously because we're anxious.

I am very happy for kevin and if he can help you all cope with the symptoms, more power to you. If some of you though are not cured by controling your anxiety, please look into the other treatments that have been shown to work in the past.

Best of Luck,
Angie
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Postby Nancy on November 16th, 2007, 11:13 am

Phenotypic variants of autoimmune peripheral nerve hyperexcitability
Ian K. Hart1, Paul Maddison2, John Newsom-Davis2, Angela Vincent2 and Kerry R. Mills3
1 Neuroimmunology Group, University Department of Neurological Science, Walton Centre, Liverpool, 2 University Department of Clinical Neurology, Institute of Molecular Medicine, Oxford, 3 Department of Neurophysiology, King’s College Hospital, London, UK
We found raised titres (=" src="/math/ge.gif" border=0100 pmol/l) of serum VGKC antibodies in 15 out of 39 (38%) of group A patients and five out of 18 (28%) of group B patients tested (Fig. 2)
Although overall only 35% of patients had raised VGKC antibody titres detected by the 125I--dendrotoxin immunoprecipitation assay, this is likely to be an underestimate. We have previously discussed the relative insensitivity of this assay compared with a molecular-immunohistochemical assay that detects serum binding to frozen sections of Xenopus oocytes injected beforehand with cRNA for an individual VGKC subunit (Hart et al., 1997).
This finding emphasizes that acquired nerve hyperexcitability is not a single disease process, but a response to peripheral nerve dysfunction or damage arising from several different causes
Last edited by Nancy on November 16th, 2007, 1:02 pm, edited 1 time in total.
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Postby WitchyTwitchy on November 16th, 2007, 11:31 am

Richard,

I couldn't agree more!


All, I use to read and post quite often on this board- up until about 1-2 months ago. Not to be mean, but Angie's posts really, really brought me down. They made me feel like... well... impending doom was just around the corner from this unexplained condition. Then I thought to myself- I have seen 4 neuro's- 3 neuro's from Mayo Clinic and NONE OF THEM EVER gave me the "your life is doomed" feeling. In fact, just the opposite. I was diagnosed with GAD and was told that it most likely was producing benign fasciculations. It was explained to me along the lines of a chemical stimulant problem. One of them did say that the first neuro I saw could be right in the sense that a virus triggered this, but that anxiety was way more of an enemy. I hope this post is not taken in a "hard" way, but in a "soft" way.
Last edited by WitchyTwitchy on November 16th, 2007, 11:38 am, edited 2 times in total.
Smiles,

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Postby Angie on November 16th, 2007, 11:32 am

No one is debating that different symptoms can arise from different causes Nancy, but the evidence from the studies points to:

Although overall only 35% of patients had raised VGKC antibody titres detected by the 125I--dendrotoxin immunoprecipitation assay, this is likely to be an underestimate. We have previously discussed the relative insensitivity of this assay compared with a molecular-immunohistochemical assay that detects serum binding to frozen sections of Xenopus oocytes injected beforehand with cRNA for an individual VGKC subunit (Hart et al., 1997). …..We speculate, therefore, that the serum of most of our patients may have contained VGKC antibodies, and that these antibodies contributed to the pathogenesis of the nerve hyperexcitability. The 125I--dendrotoxin immunoprecipitation assay, however, is still the only assay for VGKC antibodies that is routinely available and provides a useful screening test for the diagnosis of autoimmune PNH.

If they do a study that shows anxiety is a cause for PNH symptoms I would really like to see that. I'm sure the ultimate cause depends on your symptoms, the degree of syptoms, your medical history and so on. These studies look at autoimmunity and I wanted to provide them incase anyone thinks they have it and need to be treated for it. That's it.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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Some much needed humor!

Postby jackalgel on November 16th, 2007, 11:35 am

OK, I'm not going to join this debate other than to say that prior to August 2007 I was among the healthiest people I know (with the exception of migraines, my personal cross to bear). I don't even have a primary care physician because I haven't been to a doctor in years for anything other than my annual migraine check. However, 2007 has been absolutely the worst year of my life in terms of stress and anxiety. Each issue taken individually would not have caused a problem for me prior to this year, but mix them all together, throw in menopause, extreme insomnia, and nerve-wracking personal situations, and suddenly, overnight it seems, I am twitching like crazy. So yes, I can absolutely see where this could be an anxiety issue. And I don't need to tell you what happened to my stress and anxiety when I googled "tongue twitching".

So, I decided that perhaps I do need a primary care doctor to do a full physical work up on me. My appointment was yesterday. She had a nurse trainee with her. They went through the usual stuff and I had told them all about this last year, the twitching, etc. She asked the usual questions about strength, tripping, picking up things, etc., and I replied that I don't have any problems. I'm actually having to increase the weights I'm lifting due to my religious gym attendance to prove there is nothing wrong with me since the twitching started. So, they do the reflex tests. And my right knee won't move, not even a millimeter. The trainee tried, the doctor tried, all kinds of positions were tried, and nothing happened. And I started to freak out all over again. I saw the look that passed between them and the questioning started up again. Now I can hardly breathe. Next I was moved to a room to draw blood. The chair I was sitting in was much more uncomfortable and higher off the ground. They left the room to get something and I started karate chopping my knee, and yes, it donkey kicked with the best of them. When they returned I had them retest my reflexes and they laughed and said everything was in place, and that often because of nerves, the way we are sitting, what we are sitting on, etc., they will get different reflex responses. I'm so glad that I decided the beat myself up to get my reflexes to respond (I actually didn't have to hit myself hard at all). I left feeling much happier than I would have been had I not tried to get a response. It taught me a lesson about not panicking at these "signs" that I seem to be so much more aware of since twitching.

Have a great day everyone, and if you are at your doctor's office and your reflexes aren't responding - just request a different chair!

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Postby Angie on November 16th, 2007, 11:45 am

I love ya Vanessa and I'm sorry to bring you or Richard down. I think of it as great news!!! A benign autoimmune condition! Yeah!!! Treatment for it!! Yeah!!!! I knew I was sick with something and I'm pretty sure I know what it is! Yeah!!!! I'm being treated and I feel better! Super, doper magnificent yah hoo!!! :lol: My husband will have arthritis the rest of his life- which started at age 25- and he's doing great.

The five page list of anxiety symptoms I found a downer personally. I have a problem because I'm giddy, I blush, I experience in body temperature increase or decrease, I feel clumsy, I've had infections and nausea, I've gained weight, I can hear and have bad dreams?.....And that's just for starters. I really should be in an institution by now if I go by the list.

I'm sorry if I've been too harsh or at all unkind to anyone. I really am. I sincerely believe we will all be better off if we really deal with the condition we have whatever it is. I do like to see the science behind things though. That makes me feel better. I will try to be a kinder, gentler Angie to follow based on my friends advise.
Last edited by Angie on November 16th, 2007, 11:47 am, edited 1 time in total.
Cramp-fasciculation syndrome: a treatable hyperexcitable peripheral nerve disorder.
Neurology. 1991 Jul;41(7):1021-4 Tahmoush AJ, et al.
"muscle aching, cramps, stiffness, exercise intolerance, and peripheral nerve hyper excitability"
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