ALS Forum Responses Bring Fear

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EnglishEddie

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Hello. thanks for looking at my post. I have recently posted on an ALS forum, and received quite a few negative, if not abusive replies. I debated posting here for.fear of the same. But hey, ive got thickish skin.I am a 41 year old, previously extremely fit / healthy male from the UK.At the beginning of August this year, i became ill with flu like symptoms, tiredness, general malaise, low grade fever etc. I also had recurring perfectly round mouth cankers. I couldn't shake this off and visited my GP who took loads of blood tests. Shortly after i began getting really intense pains in my lower right rib area. It felt like my liver was twice the size it should be. What really stood out to me though was a tremor in both of my index fingers. The tremor was an evoked response, caused by use of a mouse or similar everyday function.My liver was scanned along with spleen and kidneys. All normal. My bloods all came back fine, with the exception of raised Epstein Barr titres. My GP told me this was probably a flair of an old infection. Although i got the impression he didn't really know what was going on.September came and went, as did the illness, some days didn't feel too bad, but most times i felt at best "wrong". October was the same, no improvements / changes.in November i started to take olive leaf extract, L Lysine and milk thistle in an attempt to support my failing body. I revisited my GP, who did more blood, all still fine.In mid November i began to feel incredibly dizzy / lightheaded and noticed a ringing in my ears (tinnitus) along with some minor cognitive issues like seeing letters the wrong way round and having a few memory issues. i was also getting really odd and and random muscle twitches / spasms in various parts of my body. I also had a really spaced out, wooly head feeling, really difficult to describe.I ended up in the emergency dept. Of my local hospital on three consecutive evenings. I was assessed by three different Drs, more blood and head CT scan. All normal.i then went on to see 2 further drs on a ward. They could find nothing. The next day i went to see a neurologist who gave me the most thourough work up ive ever known... He could find no abnormalities.Since then i have had more really odd symptons / sensations. Ive had some strange feelings on my tongue, almost like numbness or tiny spasms, or as if there are hairs on the tongue or throat. the twitching / spasms come and go absolutely everywhere. Ive had some crampy feelings in various parts of my legs and feet and a feeling that my ligaments are shortening. i sometimes get a feeling that something is crawling on my skin. I also sometimes get a feeling that someone has flicked water at me. The tinitus has been a permanent fixture. The most bazaar thing though is above my left eyebrow... When i raise it, it feels odd and then feels like momentarily it doesnt drop down when i stop raising... Like i said, bazaar. that has now thankfully stoppedI have been back to my GP. He has listened, examined and says he can find nothing wrong. I have seen SEVEN doctors and a neurologist Doctor since November. I havent seemed these doctors out in an anxiety frenzy, i was passed from 1 to another as no one really had any idea what was going onMore recently, in the last three to four weeks, my arms have felt different, sometimes heavy, weak or cramped. If i make a fist and use power my entire arm tremors. this doesnt happen all of the time. This has been predominantly the right arm.The twitches \ spasms have latterly grown much worse. They appear all over the body, in particular my arms, but i get them in my lips, cheeks, and even in my ear drums i think!My doctor here in England is a fab chap, but is insistant that i am suffering from anxiety. Its like he cant see past that to see anything else.yes i am anxious, but i would doubt anybody who has felt ill for a long time wouldnt be.I have arrived on this site by internet recommendation. I am awaiting results of an mri ordered by a neurologist back in november... I could tell he ordered this in an attempt to plicate me. Thank you for your patience in reading this. Any advice or thoughts are most welcome. Happy christmas.
 
So far with 2 private contact exceptions I have been ignored on this site. So be it. I can only offer my experience as a current sufferer of 5 months. It dawned on me just last night of an occurrence 19 years ago when I had similar symtpoms to yours. I was just entering a formal education in Acupuncture & Oriental medicine in one of the first 4 year masters course in the USA while I was simultaneously apprenticing with a famous Chinese herbalist. I had self diagnosed myself as having parasites causing three years of suffering. The MD I had seen 3 years before said that my nervous system was shot. A not so good excuse. So he put me on 0.25 Xanax which I took for three years. It quieted the problem but NEVER resolved it. I begged my new Chinese herbal mentor to help me as I had self diagnosed myself through a blood test.......that I had a liver fluke parasite which invaded my liver & gall bladder causing digestive disturbances amont other symptoms of dizziness, anxiety, etc. He proceeded to give me raw herbs that when cooked (decocted) tasted worse than they smelled and they smelled terrible. Within 4 days ALL of those symptoms were gone since 1994 until now. I had to suffer through 4 days of intended diarrhea to kill the parasites and expel them (all microscopic as far as I could tell). I have looked around this site, seen other people's symptoms and have come to the conclusion that I have parasites again. And now I know what to do. Back then as probably now if you ask an MD to check you out for parasites they more than likely will NOT find anything because one has to know which kind to test for and if they do a stool analysis the parasite remnants may not be in that particular stool sample. So it is a hit and miss but WELL WORTH THE EFFORT. Parasites are difficult to detect in the blood unless one knows what one needs to look for. Last night I dreamt all night of parasites causing my current symptoms....so this morning I took just two powdered herbs in capsules of a formula I make to kill/clear parasites. It is early but but I can tell you that subjectively the twitching is calming down. Oh....by the way...for all who use western medications like the klonopin or even the xanax...all that is happening is that the parasites are getting stoned/drugged. The meds are not killing them or expelling them. This is just MY story and for those who wish to hear any further results contact me privately since it appears that the bulk of those on this site don't want to hear about real results.
 
I can not advise you what to do for obvious reasons... but this is what I am going to do in addition to my own formula. Individual herbs one might use are: pumpkin seeds, the rind of a pomegranate, black plum (wumei), spice cloves. Pumpkin seeds probably being the easiest to get UNSALTED.The traditional Chinese formula is called WU MEI WAN.
 
Thank you Acudoc... I will look in to your advice.And to forum moderators... I apologise, i have just read a lot of the posts at the top of this forum and have taken in a lot of information.Im sorry if my post appears futile or selfish.Dave.
 
Hi RainCat ... Thanks for your words and advice... It is truly appreciatedI know Perhas in comparison its only been a short illness, but after months and months of changing and.worsening symptoms my mind is frazzled sometimes!! What is the medication you wrote of? Is it an.anti anxiety drug?
 
Just had a look at LDN ... Cant really believe it!!! Sounds like a wonder drug. can i ask are you in the UK and if so how much do you pay.Thanks for passing this on... even if its not suitable for me its well worth knowing about.Thank youDave
 
That'd be great thanks...can you personal message on here ?Seems really cheap too. Ive given up with NHS. Having said the last Dr i was 230 POUNDS for 45 minutes. she prescribed me pregabolin which was another 115 pounds for a ..months course. Jurye is out on that one!!!
 
LDN in low dose is reported to be a super immune booster. Logic dictates that if that is the ONLY reason for one's symptoms then great BUT if there are other contributing factors such as parasites the LDN will more than likely have zero effect on killing and getting rid of the parasites and the parasite byproducts which BTW...amonia is one of them which can often produce the dizziness. I will repeat here some simple things we can do that are anti-helminic (anti-parasitic). Eat a handful of shelled (unsalted) pumpkin seeds several times per day. One can slow simmer boil the following ingredients in a pot of water for 20 minutes....drain the ingredients and drink the liquid either warm or cooled. The peel of a pomegranate, ground spice cloves, broken up umeboshi plums, pieces of dried raw rhubarb root.43RichyThe43rd
 
ALL of the western medications short of anything for parasites will ONLY at best mask the symptoms (which in some cases is well worth it to keep one's sanity). But I ALWAYS ask......where is the medication to totally RESOLVE the problem? The MDs usually have no idea. One MD pathway is to visit an Infectious Disease MD. Now they will usually ask a sort of ridiculous question such as "have you left the country". The reason why that is ridiculous is that when I had the liver fluke parasite invading my body and eating my liver.......between 1991-1994.....I was able to confirm from the Center for Disease Control in Atlanta that such parasite comes into the United States on lettuce from South America. So another important function is to insure that all your vegetables and fruits are well washed to kill off any parasites.43RichyThe43rd
 
Hi Dave.I can tell you that I share(d) many of the same symptoms that you have including the tinnitus which for me developed about 2 years ago. I am actually not certain it is related to the bfs but I do also get twitches in my inner ears...yes there is a tiny muscle in there which can twitch. For me that comes and goes although at the onset of bfs was pretty constant in my left ear.As you experienced, I also had lesions in my mouth as well as two small growths that had to be surgically removed - they were benign. My oral surgeon actually suggested that all of my symptoms could have been a systemic reaction to a virus. There has been ongoing discussion here that bfs could be caused by a body-wide reaction to the herpes virus. I can't even begin to list all of the symptoms I had particularly at the onset of the syndrome. My neurologist said "nothing can cause all of the symptoms you are reporting". And I definitely had a couple of doctors who thought it was all anxiety related. I assure you my symptoms were very real and many of them obvious like growths in my mouth and undulating calves.After seeing 7 doctors you can bet that you don't have something they can put in a box or that is deadly. Your symptoms are consistent with so many stories I've heard, including my own, whereby someone has a virus which is followed by twitching, cramping, sensory issues, tremors, fatigue, etc. I searched for an answer for a long long time. Even recently I asked my doctor to test me for Bachet's because one of my early symptoms was the barber chair sign along with mouth sores. She ran those autoimmune profiles which, of course, came back fine. Hang in there. I think generally my symptoms have improved a LOT and, obviously, the anxiety subsides with time. Be well,Mark
 
In Chinese medical concepts and principles.......the twitching (a.k.a. wind) belongs to the Liver-system and the tinnitus belongs to the Kidney-system. In just one of at least twelve diagnostic perspective systems called five element.....when the Liver-system is stressed it can cause a deficiency or strain on the Kidney-system. Liver-system controls the tendons, the nails, the eyes, and the emotion of anger is related...... while the Kidney-system contols the bones, the hair on your head, hearing and the emotion of fear is related. In western medicine the liver has over 500 daily functions and is the MOST important organ from a functional/metabolic standpoint in the body while the kidney (a.k.a. adrenal glands) are the root/base of the endocrine system. One of the reasons for tinnitus from both western and Chinese systems is adrenal insufficiency.As to viruses. In terms of sizes...a virus generally is the smallest in size and they can live inside the bodies of bacteria which both can live inside the bodies of parasites. So YES.......we can often point to a virus when certain symptoms are present but that does not exclude that they were brought into the body inside the body of a parasite which often remains.Reminds me of chronic sinusitis or rhinitis. Western medicine both by prescription and by over the counter, treat with anti-bacterials. Ever wonder why sinusitis becomes or remains chronic? It is because what is sold is NOT addressing fungal. Whenever there is mucus/dampness........ that is a prime breeding ground for fungal infection. Then bacteria grow...so anti-bacterials are used which get rid of the bacteria but the fungus remains to continue to cause disturbance and the cycle of infection starts all over again.
 
Wow thank you mark and 43RichyThe43rd . fascinating stuff... it's reassuring to here ppeople have shared the same journey and emerged the other side. I was beginning to divorce the 2 parts of my problems.... I.e i had a virus in August and now i have totally separate neurological signs with a bit of the viruus thrown in.Im starting to realise how much the two may be linked.Thanks once again for your continued support.Dave.
 
Hello EnglishEddie, I honestly do not think that your problem is BFS, I think it is CFS. Well, I am actually not sure if there is at all a difference between the two. I am seeing a CFS/Fibro specialist on 9th of January, but I have spent a lot on his (unfortunately Emilyomouse) site , with the typical list of post-viral-CFS onset(I think my problem is really fibro/CFS ) icluding...after a viral infect with fever....running low grade fevers , reoccuring mouth cankers, muscle pain, twitching, sensory symptoms, fatigue and tremors. My most prominent symptom besides my pain/stiffness are my hand tremors..geeeez...Ieven made a video of them, going to show you.
 

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