Discussions By Condition: I cannot get a diagnosis.

muscle weakness

Posted In: I cannot get a diagnosis. 48 Replies
  • Posted By: racingfan3
  • June 27, 2007
  • 11:24 PM

I have had muscle weakness and leg pains for 1 1/2 yrs, can't climb stairs, walk long and the doctors still can't figure it out. Have had nerve test done, 3 different results..MRI's..just tired of going back and forth. any suggestions?

Reply Flag this Discussion

48 Replies:

  • Seriously, look into CFS. The damagge that is happening is on a cellular level...hence everyone has normal "scans"...If there is not a tumor, they can't see what is happening. There are many people complaining of the muscle weaknessdo you have joint pain?muscle pain?swollen lymph nodes?dizzy?ringing in ears?diarrhea?vomiting?facial or upper body flushing? just wondering...sometimes people have many sx but only discuss the one or two that really bother them or they can't "chalk up" to something else. Stick around, you are not alone...I wish you well...mommy cat
    mommy cat 1654 Replies Flag this Response
  • I have pain in my legs, what is CFS? I have muscle twitching really bad in the legs..I have had MRI's, cat scans, blood test, EMG (2) nothing is showing..it takes all I can to drive to work, walk in the stores and even at work or home...
    racingfan3 6 Replies Flag this Response
  • CFS is cronic fatigue syndrome. It is real. I have it. Many here are looking for their answer and I am afraid it is their answer as well. What other symptoms do you have?Can you trace symptoms back to severe trauma/acciddent? bad case of viral flu? vaccines?I can be reached at bentnotebluesATnetscapeDOTnet for further information...mommy cat
    mommy cat 1654 Replies Flag this Response
  • The only symptoms I have is just weakness in the muscles, pain in the legs when I walk alot, and twitching in the muscles. I drop things alot. I asked the doctor about Chronic Fatique syndrom and he said no. I was checked for MS, but the MRI came back negative..one doctor asked me if I had gained weight recently..I said no I have been the same weight for the past 10 yrs..another neurologist ruled out ALS...he said that the EMG would have showed that. I am just at my wits end..a friend of mine said that I sould think about the Mayo Clinic, he ended up going there because he had the same issues and the same answers, from other doctos but ended up being ALS, he is in the same condition as I am in now...
    racingfan3 6 Replies Flag this Response
  • The diagnosis you get, very well may be ALS. What I'm trying to say, is there is an underlying cause for the symptoms of ALS. A few of us who have been in the forum for a while, have either been diagnosed or have self diagnosed themselves with CFS. It all fits like pieces to a puzzle. ALS is the microdiagnosis. CFS is the macrodiagnosis. We have done a lot of research and have information regarding all of this. I am not just pulling information out of the air and giving my advice because I am bored. I am doing it to try to help other people. We are just a few of many.I said before, MS, ALS, ect...muscle weakness, tremors, twitches...I have all of them. Do I have ALS? maybe. But I have CFS. Any diagnosis that falls under that one, is infact, a symptom of CFS.Hope this helps. I'm here...mommy cat
    mommy cat 1654 Replies Flag this Response
  • that helps alot..I just have been through so many test, blood test I told my husband that I am not going to see any more doctors..I will just keep doing what I can as long as I can..I have a friend that has CFS, she has had it for quite a few years..I know it is very ******n her at times..I know that CFS, ALS is very hard to diagnose..my family doctor said that there really isn't a test that shows either one of them and he doesn't always agree with the neurologists that I have been to. We have tried different Med's but still the same..Thank you so much for talking to me... I'm just frustrated that I can't walk or exercise like I used to do. I would walk almost 2 miles a day, do tai bo all up until 1 yr ago..luckily I haven't gained any weight..but I do miss doing that
    racingfan3 6 Replies Flag this Response
  • it's me again...reach me at my e-mail...I left it for you in a post above. I have alot of info that will help you and others. Everyone knows someone with CFS because it is beginning to affect us all. I'm here and I know what you are going through. If I had time, I would share my story and then you would know why I am so ferverent in my messages...:D mommy cat
    mommy cat 1654 Replies Flag this Response
  • Chronic fatigue and ALS are two entirely different conditions. You need to get to the bottom of this Racingfan3 otherwise you might end up making things worse for yourself. I think I am right in saying that an EMG cannot rule out a diagnosis of ALS, it can only provide supportive evidence. That doesn't mean to say it is the correct diagnosis however (I believe ALS is usually associated with asymmetric muscle weakness, which would affect your coordination, and this sounds like it is OK). Some kind of muscular dystrophy or atrophy sprang to mind when you described your symptoms, but these are usually hereditary. Are you actually suffering any muscular atrophy? There are differential diagnoses. There could be a viral cause, although I would have hoped that the blood tests would have ruled that out. Spondylosis is another, although a scan might have ruled that out (depending on what was scanned and how). There is another diagnosis which I am almost frightened to mention on this forum, as there are some who believe that it is the cause everything. That is Lyme Disease. This is a possibility not a probability and if you previously enjoyed walking barefoot through tick infested country, then it is something you should check out. If you live at the top of a skyscraper and do all of your walking in shopping malls however, you can forget about it. It is worth asking anyhow, whether the onset of your condition coincided with any illness, travel, etc. Good luck and don't give up!
    Anonymous 42789 Replies Flag this Response
  • A study group of MS patients participated in a research trial recently. All had a confirmed MS diagnosis. Over 90% of them tested positive for antibodies to a cryptovirus in their cerebro-spinal fluid. Many doctors, Scientists and researchers are beginning to believe that viruses may be responsible for many of our Neuorological diseases like MS, ALS, Parkinson's, Alzheimers, CFS/ME and so on. All of these diseases form lesions on the brain. There are connections here, not just coincidences and correlations.CFS is the macrodiagnosis...MS, ALS, Alzheimer's, Diabetes, cancers,and many other diseases are the microdiagnoses.Research the info I've provided, you will find it is true.many CFS/ME foundations are funded privately, not by the government and they are doing research trials everyday. This disease process is very complicated. No wonder it's taking so long to figure it all out.
    mommy cat 1654 Replies Flag this Response
  • MC, there are two possible explanations. The first is that these conditions can actually cause the generation of the antibodies and have nothing to do with a virus. The second is that they are associated with a past viral infection, indeed that is why CFS is sometimes called post viral fatigue. Whether that virus is active or not is another matter. The fact that not all CFS sufferers test positive for the various antibodies (EBV, etc.) means it is not as black and white as you suggest. But you are saying that all of these conditions are the same and that is just like saying all viruses are the same. That they most certainly are not. Irrespective of whether these conditions are postviral syndromes or not, they must be treated differently. I have heard of Robbins and his Cryptovirus (for which he has submitted a patent). I have not seen his work published openly, so I can't comment on it. I don't know how many healthy patients this newly discovered virus was detected in also. That apart, I don't think it is right to tell everyone that they have CFS (especially as there is no cure for it). This can only be arrived at by ruling out other possible conditions and only then should steps be taken to treat it as well as we know how.
    Anonymous 42789 Replies Flag this Response
  • :) Dear kenn, not tell people they have CFS, because there is no cure? Are you for real? So we should not tell people with some forms of cancer, that they do not have cancer....because there is no cure?You obviously are not seeing what myself and others are seeing.Yes there are specific diseases like MS, ALS, ect...yes, they all have their own treatment....but the underlying cause for many/most diseases is CFS.CFS happens at a cellular level. Cells can't function normally. What happens when cells don't function normally? disease.I'm not here to argue with you kenn, there are people who need help. You and I bantering isn't going to help anyone.Do some research on the things I write if you don't agree, then come back and refute what I'm saying. I'm not just giving information out that I'm pulling out of thin air. These are the findings of a group of people who have been relentlesly researching information on CFS. We all have it and we all want to know why. We have come to many conclusions, together as a group. These are not just my opinions. They are informed, educated, knowledgeable bits of information to help others.If you don't agree, keep reading past what I write. There are people that my information is helping everyday. In this forum and behind the scenes.Nite...mommy cat:)
    mommy cat 1654 Replies Flag this Response
  • Complications of Crohn’s Disease

    Recognize the risks associated with Crohn’s disease.

    8 Surprising Facts About Cholesterol

    Did you know that one in six US adults has high cholesterol?

  • i beg you to please read every post by "mommy cat" it seems eveyone has cfs. the symptoms range from a stubbed toe to anything.....are there any symptoms that are not of cfs? please follow up with your doctors and do testing. have a doctor rule out other illness first. good luck to you
    Anonymous 42789 Replies Flag this Response
  • Kenn, I don't experience muscular atrophy..I get real bad muscle spasms, my muscles twitch..sometimes when I get a bad spasm and my husband tries to rub it out he said he is soft like mush and not hard..but boy does it hurt..I just have had every blood test that I can imagine, emg, etc..I can barely get out of my car at times...the Dr ruled out MS...I have seen 3 neurologist...they don't seem to understand..they say the believe me and that is as far as it goes...mind you all 3 neurologist have come up with different conclusions..
    racingfan3 6 Replies Flag this Response
  • Dear unregistered...grow up and go do something constructive.
    mommy cat 1654 Replies Flag this Response
  • I know you said you had blood testing done... im wondering if it may be a vitimin deficiency? low potassium can cause leg cramping (bananas are a good source) also low b-12 can cause problems. I always try to get a copy of my lab results because even though a doctors office says they are "normal" sometimes you will find you are borderline and maybe a supplement can help or a re-test can show a deficency that you thought was already ruled out because you believed you were in the "normal" range. There are also more extensive testing that can be done for different vitamins/minerals.
    Anonymous 42789 Replies Flag this Response
  • MC, there are two possible explanations. The first is that these conditions can actually cause the generation of the antibodies and have nothing to do with a virus. The second is that they are associated with a past viral infection, indeed that is why CFS is sometimes called post viral fatigue. Whether that virus is active or not is another matter. The fact that not all CFS sufferers test positive for the various antibodies (EBV, etc.) means it is not as black and white as you suggest. But you are saying that all of these conditions are the same and that is just like saying all viruses are the same. That they most certainly are not. Irrespective of whether these conditions are postviral syndromes or not, they must be treated differently. I have heard of Robbins and his Cryptovirus (for which he has submitted a patent). I have not seen his work published openly, so I can't comment on it. I don't know how many healthy patients this newly discovered virus was detected in also. That apart, I don't think it is right to tell everyone that they have CFS (especially as there is no cure for it). This can only be arrived at by ruling out other possible conditions and only then should steps be taken to treat it as well as we know how.Ken, do you spend every night in a Medical Library reading journal articles on CFS? MCS, and ME?I do- so you have to do a lot of reading to cath up with us.The only reason that CFS has no cure is because it is not good for the business. (wink- wink).Best,
    Eatafruit78 960 Replies Flag this Response
  • fruity,im not sure how old you are or even if this is relavent to the question. but here goes.... in response to your post about the reason there not being a cure for cfs is because its not good for bussiness. years ago(heres where the age thing comes in) it seemed like everyone who couldnt be diagnosed was given the you have epstein-barr get some rest take some vitamins. now it seems no one just has ebv they now have cfs or fibro or both!! im just asking your OPINION here do you feel that in years everyone will all of a sudden have some newly named syndrome? just as baffling as cfs? with a whole new list of symptoms? there was no cure for ebv when that was the popular diagnosis - there is no cure for cfs now that seems the popular diagnosis - whats next? by the way I say being the popular diagnosis meaning that yes these are real and do exist but often times i feel then are overly diagnosed - insurance companies now are starting to recognize fibro yet some dr.s still dont believe it exists. i think it would be good for bussiness to get some treatment options out there for insurance companies to suck up or pharmacutical - are there any drugs you know of being trialed for cfs that you know of? i take provigil dont find it too helpful-insurance wont pay for it b/c its cfs related -
    Anonymous 42789 Replies Flag this Response
  • Racingfan3, there is obviously something not right here and you have to persist in getting to the bottom of it (like it or not!). It does sound like a nerve problem somewhere along the line, although it is disappointing that the neurologists can't agree. It might be problems with your lower back (which part of your legs hurt - your calf or thigh?). If this is the case, you can easily damage a nerve and your subconscious compensation can lead to all sorts of pain. It might be that you would benefit from physiotherapy and maybe you should speak to your doctor about this. It might be that anti-inflammatories might help also and perhaps you should mention this also (if you haven't tried them already ). Other than that, it might be a case of chosing which neurologist to go with. Good luck!
    Anonymous 42789 Replies Flag this Response
  • Dear Kenn, racingfan3 does have a nerve problem. There is no question there. CFS is called Myalgic Encephalomyelitis...myelin being the myelin sheath that covers the nerve cells. It gets deterioriated at a microscopic level. hence the fact that everyone is having MRI...MRA...CAT scan and docs can find nothing. CFS happens at a cellular level. not only the myelin issue but the mitochondria of cells are not working properly. This illness is everywhere and accounts for most of the diseases known today. Seriously, Parkinson's wasn't around 200 years ago...then again, neither were a lot of the diseases we know of today. I know...you are going to say it has to do with other outside influencesresearch CFS/ME. Do some homework before posting to people and "debunking" others insightful and helpful information. We've done much research. Now, it is your turn.
    mommy cat 1654 Replies Flag this Response
  • Dear Kenn, racingfan3 does have a nerve problem. There is no question there. CFS is called Myalgic Encephalomyelitis...myelin being the myelin sheath that covers the nerve cells. It gets deterioriated at a microscopic level. hence the fact that everyone is having MRI...MRA...CAT scan and docs can find nothing. CFS happens at a cellular level. not only the myelin issue but the mitochondria of cells are not working properly. This illness is everywhere and accounts for most of the diseases known today. Seriously, Parkinson's wasn't around 200 years ago...then again, neither were a lot of the diseases we know of today. I know...you are going to say it has to do with other outside influencesresearch CFS/ME. Do some homework before posting to people and "debunking" others insightful and helpful information. We've done much research. Now, it is your turn.Why would she take an anti-inflammatory? Isn't inflammation a healthy response from the body? Do you ignore your body when he tries to tell you something?
    Eatafruit78 960 Replies Flag this Response
Thanks! A moderator will review your post and it will be live within the next 24 hours.