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ixxygarnesh

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Hi everyone,i'm new to this site.wrote a short question a couple of days ago, but only got one answer.here comes my long story (tried to keep it short, sorry!) I would be very thankful to all who takes the time to read an comment!summer 2007starting to have some twithes in my right pointingfinger.dec 2007starting to feel strange tension at night in my legs.jan 2008little shaking in fingers and often remarkable tiredness in legmuscles.feb 2008my masseur told me i was little stiff in right shoulder.went to my local doctor who told me probably stress.mar 2008some strange "pulsning" in legs and arms, not visible.apr 2008shoulders, neck and legs i a little bit smaller.some sensations under my tounge and sometimes trouble with the letter S.can feel some subjective weakness in legs.also some very light cramps a little bit everywhere.some visible twitches in fingers and big toes, both sides.visit neuro nr1, suspects MND after clinical, after all bloodwork and EMG she says no NMD.visit shrink who sais no stress.may 2008some light pain in shoulders, mostly right.backpain now and then.visible twitches, very local, 3-10 sec, mostly legs.some stiffness in face muscles.visit neuro nr 2, suspects MG after clinical, new EMG also in tongue, rules out MG, probably no ALSjune 2008more of all symptoms.very light pain sometimes in knees and ancles.my wife can now confirm i'm thinner around legs, arms and neck.my right hand most thinner.some weakness in my hands according to trainer, but still normal.visit neuro nr 3 (als-specialist) who does clinical, MEP, LP, EMG and all bloodwork. he said no signs of ALS, but only time can definitly exclude ALS. don't worryjul 2008often some ache in feets, ancles, legs and hands.trouble training, strange pain, my trainer confused.now also sometimes small trouble with articulation.aug 2008very tired in shoulders when i hold a phone or eat etc.more visible twithes.sep 2008most clearly is the smaller shoulders.all symptoms a little bit worse in the right side of body but left side in face.bloodcirculation not as usual.also pretty often twithes in lowerlip.neuro nr 1 calls in their neuromusculear specialist, says no neurologic desease but we should do MRI, ALS would progress faster.okt 2008same symptoms but more ache, more weakness and also some trouble stretching fingers.neuro nr 2 can't find anything to worrie about, says smaller muscles is hard to see and he will be surprized if this will end up with ALS. countinues with MRI and sends me also to reumath.nov 2008almost constant very local twitching, diffrent places everytime, more often my right side.almost constant light cramps.trying to train but keep being slowly weaker.did the MRI, head and back.dec 2008same but little bit worse of every symptom.especially weakness in back, shoulders and calfs.neuro nr 1 gets the result of MRI, calls me and says stop thinking of ALS, i would like to see you in a year, we have done everything know, we have to wait and see.So i'm waiting for neuro nr 2 and his opinion, they all seem to think this is no big deal.Most of my symptoms has accelerated last 2-3 month.also they found some small signs at fist EMG between right thumb and pointingfinger in april, some sign of desease in my spinal liquid in june, some degenerative changes in spine and changes in frontallobe in november in the MRI.I trust my neuros but i've read about many people who gone throug similar pattern and then after 2-3 year gets the diagnose ALS.Also i'm getting slowly worse (smaller muscles, weaker, more twitching and ache) and they have tested me for everything! to me it sounds like classic ALS, when nothing is found and symptoms getting worse, eventually you end up with ALS.My concerns is mostly if i went to soon to neuros and thats why they couldn't find enough signs to suspect ALS?Or is my symptom still not gone that long so they could be turned in to objective signs for neuros, and thats why they tell me don't worry?Or maybe they after excluding everything else they now suspects ALS but wait for progression before informing me about this is probably ALS?Could this be BFS?the slight asymmetric weakness and musclewaste is for sure.it started with twitching in my right indexfinger and now the right hand,arm and shoulder is most effected by atrophy and weakness twithces, buzzing, cramps etc do not bother me that much.Thank you all for feedback and your own experience with diagnose and symptoms!Fredrik
 
Have your doctors considered whether you have Chronic Immune/Inflammatory Demyelinating Polyneuropathy (CIDP)? I mention it because it is my preliminary dx and I have twitching. It presents in many atypical ways and is not an easy diagnosis but it is treatable. I know from reading about it that abnormal spinal fluid is a sign of it. If this hasn't been thoroughly considered by someone knowledgeable on it, I would see to it that it is. I have read from a leading expert on it that one of the best tests for it is to see if you respond to immunosuppresant therapy like IVIG. Search CIDP and IVIG and FDA approval. You will see that IVIG was proven effective in a double-blind placebo trial and is approved as of September 2008 as a treatment for CIDP. I hope this info is helpful.Krackersones
 
Fredrik, have you had your Vit D levels tested? Low levels can = muscle weakness and pain. Also consider fibromyalgia??Linda
 
Your description of what the Neurologists are telling you does not fit what I have been told about ALS, I am not saying the Neuro's did not say what they say, it is your interpetation. I saw a neuromuscular specialist at the Mayo clinic who said it presents very clearly, and is not a difficult diagnosis. What you describe is not classic ALS, the average time from the onset of symptoms to diagnosis is 1 year, and it would probably be less if more people got to a neurologist sooner. Be careful what your read on the internet or wherever you are getting your info from. Are you from the USA?
 
Definite not classsic ALS as you write - with real claasic ALS you would sit in the wheelchair after 1,5 years (you write from summer 2007). You are not mentioning what was found on EMG, but ALS finding is with typicall pattern so if they dont tell you, you do not have denervation and reinnervation going on here.Look to your EMG report, for ALS are suspicous: fibrillations, positive shapr waves, large MUPs, fasciculations. Of course it can be found with also lot more diseases.BTW I have read only few stories where patients are diagnosed with ALS 2-3 years ago but EVERY of them had real weakness.And if I remember correctly, ALS does not cause changes in spinal cord fluid, MS does and lot of infections do.
 
Fredrick,You are the exact type of poster I worry about because you seem to be expressing that you have "real" weakness but others on this board want to imply that you do not. Maybe you don't but they don't know. Like I said about CIDP and other disorders, they exist and unless you are aggressive you may not get help. Is there any reason you can't research CIDP and ask your doctor why they are 100% sure you don't have it when you have the symptoms and abnormal spinal fluid and why you can't get some low risk treatment for it to see if it works. All this advice assumes you have access to affordable healthcare and are really getting worse. It seems crazy to me if both of these things are true to not be doing something, especially if the something carries little risk.Jro
 
Jro, I would say and leave it up to his NEURO'S to determine if he has REAL WEAKNESS. They are the ones to spot it..even the slightest. Over the years I've had TONS of "percieved" weakness which has all gone and come and gone and come and now gone. When I went to the doc/neuro's at times I thought FOR SURE I had weakness- I was strong as a OX and they said NO WAY. This CIDP kick you are on may be what your experiencing- maybe find a board to fit your path. I am not dismissing anyone on here and their problems. You however have said YOURSELF you do not believe you have BFS. You were told by a few doctors you did and now you found one who says probable CIDP. Well, since you dont believe in BFS why dont you find the proper board that fits your needs and answers your question. I just looked up CIDP on the net and Mayo clinic and it comes a long with significant weakness, emg changes, ABSENT REFLEXES , assymetrical reflexes etc. ,pain, tingling sensations, numbness etc. (that of all I Dont have) It is said to be found in a clincal picture as well as ALS is. I am not trying to rain on your parade or dismiss ANYTHING that you are saying but I think that people should choose their own path.
 
There are other things. Heavy metal poisoning (mercury for instance), Vit D or B deficiency, Testosterone deficiency, Lymes....Have them check them all. Doctors don't like to be wrong and you now have 3 that have told you its not ALS. Much sounds like BFS, but some of your symptoms don't...but I have muscle fatigue and burning in my arm...it has spread to more of my arm and some days my hand and arm feel REALLY weak. But I have been told its nothing. I can still do my 100 pushups....Are you exercising? did you used to and now you stopped?
 
Regarding CIDP, if you've read as much as I have on it and not just a few summaries, you would understand that there are lots of variants and it is very heterogeneous in its presentation. The criteria listed are based on the research criteria for including someone in a study but is the not criteria that doctors use to order treatment. Based on less strict criteria, doctors have ordered treatment and seen results. The results from treatment provide proof of the condition. CIDP is sometimes a lifelong problem and sometimes totally resolves after a single treatment. CIDP is a form of GBS and there are cases of people with GBS with hyperreflexes even though the norm is absent reflexes. Also there are early stages of all diseases and most people don't go to doctors until things are really bad but that doesn't mean they could not have been diagnosed at an early stage by the right physician and that an earlier diagnosis might not have benefited them. There are many on this board who have complained of numbness and tingling and weakness. I didn't have the tingling until after my twitching so things change. I also had two clean NCV tests before the abnormal ones, so again tests results can change. I may not have CIDP, I won't know until I try treatment. So until then I am no different than others here except I've had tests others haven't. If CIDP shares symptoms with BFS, should info about it be on this board. I think so. If I get a definitive diagnosis of CIDP, then maybe I'll give it one last post to concisely summarize my total journey from twitching to effective treatment (wouldn't that be nice) for others' benefit. But without a firm diagnosis I feel I am like many others here. Remember BFS means that you twitch but there is no evidence proving you have something else. There is no test for BFS. Why do you object to my sharing info that could help someone. It may not help you but lots of other people read this board.
 
THANK YOU ALL FOR TAKING TIME!about your feedback, the neuros have done all possible test. ruled out polyneuropathy, MS and pretty much all known neuro deseases, also the ones i read in your feedback.MRI (nov): the small findings where small degenerative changes in back and something small i frontallobe.EMG (may): small neurogenic changes between thumb and indexfinger. no denevertion, fibs, fasc etc etc.SPINAL FLUID (june): signs of "antibodies"(don't know if translation is correct) that usually is some desease (could be any), but after MRI they told me it's probably caused by some old virus and that happends the "antibodies" stay for life. That is all they found, everything else is normal, all bloodwork also, and they have done a lot and looked for everything, all those b12, calcium, testosterone etc etc, found nothing in bloodwork. Also no clinical signs of neuro problems.the als-specialist i met in june told me my symptoms was not caused by ALS or any other MND.the first neuro who seen me april-september told me in december it's nothing serious, maybe something benign, didn't mention BFS.the second neuro who seen me may-october can't tell yet but don't really have any signs of real weakness.ofcause I don't think it's ALS and i don't think i have real weakness and atrophy.But still, i have some weakness and muscle waste and have trouble trying to exersise. mild cramps, twitches etc etc, and it's slowly progressing.As long as they don't come to a conclusion and symptoms progressing i think there is a small risk of ending up with ALS. Why? Because i'm 35 years old and if it is ALS the progression would probably be slower than average and thats why there is no clinical signs yet...?I guess my real question is: Have anyone of you experienced some weakness and musclewaste? or does theese symptoms pointing away from BFS?the asymetrical musclewaste is my most concern( it's not in my head, my wife thought so in the beginning, but since november she confirms it because of the progression).And i live in sweden.Hope i answered all questions.Fredrik
 
FreddieTheFox, is it your non dominant side that is what you think different? How about today measure your legs arms etc. compare again in two weeks. I was told and read that Atrophy 20% versus weakness 80%. Meaning the least bit of atrophy- brings a lot more weakness.Lovely
 
Lovely,my dominant side (right) is the most effected with all symptoms, specially right hand and shoulder.I can't move might right thumb, indexfinger, "handwrist" (don't know translation), shoulder 100% anymore, maybe 90%. The reason i'm thinking maybe BFS is also the symptoms are diffrent during the day and also one day from antoher.However there is never a day without symptoms and month by month it's slowly progressing.What is your story?Fredrik
 

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