PNH Study Results - Spain 2011

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kschoenhaut

Well-known member
Hey people,Apparently there's some movement in this area after all, i found a study from 2011 on pnh umbrella called Peripheral nerve hyperexcitability : A clinical and immunologic study of 38 patients. By the names of the doctors that conducted the study i think they're from spain, i'm gonna post soon the results from the study, i bought the paper with my hard earned cash :D) .I think we should write these researchers a letter and ask them if we can participate in the next study on the subject, even if we don't get better at least our experience can be quantized and documented to help people in the future. I don't think there's any place on the world where more people with pnh gather more than this site.
 
That sounds great! Please post as soon as you can. You should ask, I have access from hospital and university to medical journals, you would spare your money.
 
Hey guys,The study focuses on PNH as a clinical entity associated with other stuff, not bfs or cfs. So the results basically show what other diseases have the most pnh associated, it's not really relevant to what we have aka PNH without any explanation.
 
Well, the study IS relevant for us as BFS is thought to be one of the PNH disorders, which is sometimes associated or predating paraneoplastic syndromes or autoimmune disorders. That is why competent neuros often run blood tests for tumour markers.I do believe this is very interesting and will widen our knowledge of possible causes. Remeber that BFS does not mean anything...its basket of symptoms that are caused by something that is not known.
 
Well my competent neuro refused to run for tumor markers and even stated they were completely unnecessary. My confusion with all this lyes in the fact that BFS is barely acknowledged and then you just said its thought to be under the umbrella of PNH, which can be associated with cancer. Rite?? I mean please tell me if I am reading that wrong....this is why so many on here get upset and stop coming, is because they are told by their neuro that what they have is benign, and we are told and told, to trust our neuros and move on, but that becomes difficult when they read on here that their neuro made not have told them everything or that there condition could be a precursor for cancer....not a good read. It does bother me, so I am not just speaking for others, I'm speaking for the fact that I have struggled all year to convince myself and others, that its not over yet and to keep moving forward, but then the "Big C" gets thrown out there, and my mind starts back tracking, thinking I should have been a lot more assertive with my neuro, which had already got me booted from his practice, which was the largest neuro science practice in our area. So now I'm just kind of left hanging.Sorry but this sort of bothers me.Robynn :confused:
 
Hey robynn,I just posted the results from the study, the thymoma happened in a minority of patients and all had myasthenia wich is obviously not the case with 99.99% of us.Most other cases weren't associated with anything, and if they were associated with something that something predated the twitching, like thyroid disease being the most common abnormality.The study shows that in 10 years of monitoring people did not develop new autoimmune disease and that only the patients that had myasthenia from the start with clinical weakness developed those tumours. Also i noticed many people reported dizzyness, sensory symptoms, chronic headaches and facial twitches compared to previous Hart study.What i can deduce from this is that:1. I won't develop autoimmune disease if my autoimmune markers are negative now, at least not related to the twitching.2. I won't get thymoma because i don't have myasthenia.3. My sensory symptoms, dyzziness and bad headaches that i get since the onset are related to the pnh.4. It won't go away ever but it can inprove or relapse/remit as that's what happened with all the people in the study and that's what we also experience on the board.So i can only deduce positive things from this study. I'm not telling people they're gonna get cancer, on the contrary.And i think censoring my post was unnecessary, if the C word disturbes pefople i won't post this kind of stuff anymore but i thought we can talk freely here .
 
Of course we talk freely, and I was no where near censoring yours or anyone elses posts. I was just simply stating what sort of keeps the doubt in some members minds going (myself included on occasions) Just because I have gotten better in several areas does not make me immune to some of the doubts that seem to be attached to certain aspects of this condition. That all being said, I truly appreciate you coming back and clarifying the study for us. Thank You for that.Please take care, and please dont take offense to what I said, it was not my intention.Robynn :D)
 
This is a summary of the study in question. Not to be an alarmist but as Twitchy Doc said some doctors are willing to test for these tumor marker by doing what is called a paraneoplastic blood series and yes he is correct in the fact that if you test positive for 1 or some that it COULD predate a tumor by up to 4 yrs if a tumor is not immediately found. Let me say it again....IT COULD!!! I guess it is at the neuros discretion and not in any way in my opinion does this reflect his intelligence.Neurology. 2011 Jan 11;76(2):172-8.Peripheral nerve hyperexcitability: a clinical and immunologic study of 38 patients.Rubio-Agusti I, Perez-Miralles F, Sevilla T, Muelas N, Chumillas MJ, Mayordomo F, Azorin I, Carmona E, Moscardo F, Palau J, Jacobson L, Vincent A, Vilchez JJ, Bataller L.SourceDepartment of Neurology, Hospital Universitari La Fe, Avenida de Campanar 21, 46009 Valencia, Spain.AbstractOBJECTIVE: We studied a case series of peripheral nerve hyperexcitability (PNH) aiming to describe clinical characteristics, immunologic and cancer associations, antibodies against neuronal antigens (voltage-gated potassium channel antibodies [VGKC-Abs] and other), and muscle biopsy findings.METHODS: Patients presenting with clinical and electrophysiologic signs of PNH were selected. We studied clinical and electrophysiologic features; a panel of non-neuronal organ-specific antibodies, immunofluorescence on rat nervous tissues, and radioimmunoprecipitation for VGKC-Abs; and muscle biopsies.RESULTS: Thirty-eight patients were included. After the exclusion of 6 cases with axonopathy of known origin, patients were subdivided according to the presence of electrophysiologic findings of motor axonopathy and association with cancer: axonopathic-PNH (group A: 12 patients), isolated nonparaneoplastic PNH (group B: 16 patients), and isolated paraneoplastic PNH (3 with thymoma and myasthenia gravis, 1 with thyroid carcinoma). PNH clinical features were similar in groups A and B. We found an overall high prevalence of clinical autoimmunity (33% of group A and 63% of group B) and systemic non-neuronal autoantibodies (42% of group A and 75% of group B). However, VGKC-Abs were only positive in 2 patients of group B. Ten patients underwent muscle biopsy, which showed inflammatory changes in 2 cases and nonspecific myopathic features in 8.CONCLUSIONS: PNH is a heterogeneous disorder involving the peripheral nerves in patients with a high propensity for developing autoimmunity. Associated muscle diseases are frequent in the form of myositis, myasthenia gravis, or nonspecific myopathic pathologic findings. VGKC-Abs were uncommon in this series.PMID: 21220721 [PubMed - indexed for MEDLINE]
 
Kstoruk, what you said the study implies and what the study that allmylove posted, dont match up, or am I reading the study wrong??
 
Randy, by competent neurologists I mean specialist who does run tumour markers blood test, as Allmylove16 said and pointed out in attached article, one of the causes of PNH is paraneoplastic syndrome, this is very well known. Its just one cause while other are unknown. Maybe competent was not not the right word, but many neuros are just not aware of BFS, PNH etc. I would not confuse Mayo study here, by the time of this study, not even multifocal motor neuropathy was known (has not been discovered yet).My neuro did run these tests, nothing found fortunately :)Kstoruk, you should post the article so everyone can read and not interpret what we write.EDIT: To be clear - BFS is thought to be kind of PNH. PNH is sometimes paraneoplastic, that is why it may be relevant for us, not because we should fear cancer, but because its another possible cause or at least clue that BFS does not have to be neurogenic. But more often this is linked to neuromyotonia. And for me, I would gladly change cancer for MND related uncertainity.
 
Hey guys,I'm sorry to have sparked an inflammatory discussion regarding this topic, we all know that inflammation is bad :). Let's just interpret it as a repeat of the hart study as it drew similar conclusions.@robynn the abstract is misleading, i read the study in detail including the supplemental tables on each patient and i drew my own conclusions that pertain to our group (isolated pnh).@abbitBouncyBunny not all patients with myasthenia get thymoma and not all patients with thymoma have coexisting myasthenia, but due to the association doctors can find the tumor early and when it's resected early the prognosis is excellent (20+ years without relapse).The reason why doctors don't test all we want to test are multiple:1. Most of us also have anxiety as a comorbid condition and doctors tend to dismiss our symptoms due to this pisihi hihi association, and they tend to avoid invasive procedures (CT is invasive as it exposes you to x-rays).2. The tests are low yield, meaning they come back negative in most patients.3. For some of us only symptoms are present (subjective) not signs (objective) and when a doctor sees a healthy looking chap with normal blood tests, well you know ...4. As a doctor would you listen to your patient when he tells you that he read in a neurology study that sometimes his nonspecific symptoms are liked to various things?The neurologists are very competent and we are not the ones to call them incompetent as they see human suffering on a daily basis and study a lot in order to help people. I realize that if i were in their shoes i would probably act the same ...
 
Here we go, the big Cancer discussion again. I hate when this pops up cause it freaks me out more than ALS (I know I don't have that). I do know Issacs Syndrome can be paraneoplastic in like 25% of the cases. I have never heard it mentioned with BFS (even though BFS is a form PNH in my opinion). I know Issacs has so many more symptoms than BFS. My neurologist never mentioned anything about tumor markers but I know some neurologists have mentioned it. Bottom line, if you have not been diagnosed with Issacs Syndrome I wouldn't even worry about the cancer thing.
 
Thats my problem with these type of threads, as they just ensue doubt in people who are doing there best to just trust there doctors and get on with living there life. Which can be difficult when first learning to deal with the new you, so who needs this stuff thrown in on top of all that..... :rolleyes: I know some are out there who want to find the answers, but look around my friends, isnt this board and all its members proof enough that there just arent many if any for our condition..... :confused: Take careRobynn :D)
 
Well, let me reiterate why i think this study is positive for the people that presented with twitches and/or cramps:1. Nobody developed ALS after the initial EMG, if it was clean it was clean, if it was dirty it was dirty period, nobody went on to develop ALS after the inital emg that separated isolated from known-cause PNH.2. Nobody developed MS period.3. CNS symptoms such as personality changes, sleep problems, anxiety, and mood changes were common. With the exception of personality changes i experienced all of them .4. Nobody had or developed any deadly autommune diseases like scleroderma or lupus.This study basically says the same thing as the mayo study, only that it's more detailed, nobody died and nobody developed any serious neurological disease ...
 
Almost everybody in my family that has passed has been from cancer, not one of them twitched! . My aunt was 39(lung cancer), my granfather was 53(lung cancer), My great grandmother 83(bone cancer), I had one aunt die at the age of 8 from lukimia, and on and on, but no twitches. This stuff is just grabbing at straws to me.And DD, thats the quote of the year, "Life is 100% Fatal"...lol so true, I guess we were all born to die, but there is alot of in between huh?? :D)
 
Randy keep winning. getting mixed up in this kind of stuff will only cause you to look back and make you stumble. As much as I think you are a TREMENDOUS help to others here, my advice to you is get the heck out of here! I mean it. PM us if you need some reassurence but you do not owe us anything. You have repaid you debt ;). You are a great person with a big heart. You need to jump into your knew life 100%. This place will only hold you back from that my friend. I rarely give that advice. Maybe once so farDD
 
Thanks for the GREAT compliment DD :D) Some of the other people on here don't feel that way, But I just wanted to try to help in what small ways that I could. I never google or study this stuff at all since the onset of my twitches, Everything that I have learned has been on here, Good and Bad. But your correct when you say this stuff is holding me back, just like the rest of these good people I start moving foward then something comes along to knock me back down. But this thread was not one of them, I just hated seeing some people that fear this have to be brought back down again. I never even knew what a dent or atrophy was untill i found it on here, I have never been on an A@$ board, I never heard of MG or any other diseases like these till I got on here. I made a thread on a knife and Gun collectors forum that I'm a member on when this stuff first started and told them about my BFS problems and I had a good friend on there pop up and say he would be praying for me because he knew what it was like to have EMG's and fear, Not because he has BFS but because he has MG. He really opened my eyes when I asked him about some of his symptoms(our biggest fears). And he said to me, and I quote" I have mg, mg don't have me brother"... I don't understand why you all do this, it's not fair to people to spread your fears on them. We are all here for support and not to try to find an answer that does not exist. But yes maybe I will leave, but I can't promise DD. But know I really understand why you said this, and I really appreciate it more than you will ever know. God Bless you friend.... :D)
 
als is much worse than cancer. I know some people who had cancer and are very well today. With cancer there is hope. You can do chemo. Radio. There is a possibility you will get better. With als there is no hope. The person will become imobile and will die.
 
I have a diagnosis of PNH of unknown aetiology, had all the bloods 6 years on and no tumours etc. The mag phos (3 months) and the LDN (3 weeks) have given me some excellent results in cramping, nerve pain, stiffness and fatigue. I now see light at the end of the tunnell in respect that the more troublesome features of my condition can be eased. Like DD says you have to adjust your life and learn to live.
 

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