Possible CFS or FM diagnosis. Again, hopefully not ALS.

Posted , 9 users are following.

For the sake of myself and other people who might search up this post and find it useful, I decided to keep a record of what is going on with me.

Background info: I am a 29 year old male, exercises regularly and works an 8-5 office job. Prior diagnosis before all mentioned symptoms was migraine with aura. 

Symptom: Fasciculations all over body, mostly present around legs and lower spine area. They are good to me on certain days where they decrease in frequency. 

Neurologist: Performed reflexes tests. All passed. Nerves on clinical check without tests were highly conclusive of no damage. Could be due to stress and anxiety

Symptom: Leg, arm and abdominal muscles easily tired out. Feels crampy or about to get cramps. Shaky knees. Limbs feel heavy. Pain in muscles or joints intermittently on some days. 

Neurologist: Analyzed tender points and were slightly painful.  Possible fibromyalgia. May cause easy fatigue and deep ache. High muscle sensitivity. Performed strength test and concluded Perceived weakness. 

Symptom: Labored breathing that comes and goes. Feels like lungs are congested and airway constricted all the way to the throat. Usually disappears after a few hours. Occurs Everyday.

Neurologist: Fibromyalgia will not cause breathing issues. Most likely anxiety. 

Presently, over 3 weeks now, the Fasciculations increased with admittedly stress levels remaining the same due to new symptoms surfacing. Feeling extremely uneasy about the muscle issue as now I notice my tongue muscles just above the larynx or Adam's apple is stiff and tires out easily. Also noticed because of this, I am more aware of my speech issues as I felt more tired and lazy to use my tongue. Note that this also comes and goes. Occasionally wake up with pins and needles all over now.

i am going to see the neurologist again on Monday and will ask for a EMG test for arms,legs and tongue if possible. Going to lung specialist on Friday to determine if there is any isolated cause for the occasional breathlessness. I'll update after each visit is done. 

Question for the experienced guys here. Do you concur that fibromyalgia or CFS will produce symptoms like this? 

Sirry for the Long post. I hope as a new member I'll be able to contribute back. 

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  • Posted

    Quick correction: Neurologist tomorrow. Will ask for tests to be done. 

    I feel like crap again today. My joints are aching, muscles tired and my lungs are killing me. I'm starting to hate this thing if it keeps giving me new stuff to think about. It's bad enough that we already have to handle a big mountain and we are presented with a bigger one. 

    Is it common to feel pain at places that you never felt pain before? 

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  • Posted

    Just finished my neuro appointment. Based on his clinical physical check, he still does not find any forms of clinical weakness. More of a muscular fatigue probably. Told him about breathing problems like not having enough energy to expel my words loudly and also my tongue and jaw gets really tired if I talk too much or chew too long. Have been prescribed therapeutic treatment for low doses of anxiety and tensed muscles which might cause muscles to easily tire out. Meanwhile also performed blood and urine test to check out any abnormalities especially in creatine kinase.
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    • Posted

      A tad disappointed that I couldn't do my EMGs or nerve conduction tests. But the doctor guaranteed that at this point of time, the tests will NOT show anything. Good thing is that he is still open to more tests if the problem persists in the longer run.
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    • Posted

      You're doing all the right things. Keep on investigating til you're sure you've got to the bottom of the problems and recieving best treatment for yourself. I'm very fortunate to have an osteopath close by who specialises in M.E./CFS. I was on carers coming in daily to get me up and fed and leave my lunch ready for me. Then I met Raymond Perrin, (who developed the Perrin Technique). It cost me thousands but at least I'm more independent now.

      keep us updated with your progress please.

      regards.

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    • Posted

      Hi jk

      I believed you told me that you suffered from air hunger. Could you perhaps explain a little how your air hunger would feel? And how it would start and end?

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    • Posted

      Hi, it's me, Jackie, who posted about air hunger. It's a sensation of not getting enough air when breathing. I think if you've experienced this, you'd know right away. I had this symptom for several months during my first year or so of ME/CFS. It simply ended of its own accord--nothing I did. This is a known symptom of ME/CFS.
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    • Posted

      Hi there, 

      just wanted to state, I had the nerve conduction study and 'hey presto' normal result. The twitches etc, seem very much part of mine and a friends CFS/ME. My friend also gets what jackie referes to as air hunger as well as getting tired out mouth etc. 

      Hope that helps

      B

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  • Posted

    Went to the lung doctor and she got me tested for myasthenia gravis, chest X-rays and lung function tests. Awaiting results next Tuesday. 

    Just a a quick fun question: how many if you guys would trust your neurologist's clinical examination and if he says that there's nothing to worry about. Would you choose to press on? I am asking this because as I'm wearing down on patience for a diagnosis. The waiting game for tell tale signs to warrant for a more specific test can be extremely painful. 

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    • Posted

      Well it took me many years to get a diagnoses for intersticial cystitus, though mainly down to gp incompatence, in not doing more specific tests, and speculating it was post op, gyny, hormonal, phycalogical, l did see a specialist, also pain for one, but wrong sort, shoud have been a urologist and there was tell tale signs of it being bladder in fact one gyny after a laprascope showed no probs on being asked by me what was causing the severe pain and ill health, he said we think its a bladder problem, but didnt transfer or refer me, a year later for that from new gp. can hardly bare to think let alone post the experiences of pain ill health ops unfitness lifestyle restrictions, family affects. The urologist was quite good, in diagnosing with scope, and treatment that improved it quite a lot, and good attitude. Now years later here l am again, not quite as bad as past, but with symptoms that cause discomfort severe at times,  and restrictions even worse than before maybe being older adding to it, but slowly worsening over 2yrs, bad over 6months, now 4month wait and due to see rheumy, for possible fibro. Last year l,d nausea daily for 8month from waking to bedtime, worse with movement, what an endurance that was, even more restricting and miserable feeling, saw gastro 3 times had scan, scope, bit of gastritis diag nosed, put on omproazole, never heard of them prior, after learn masses are on them, adn you can buy them under different name at chemist, and they did settle it 9o percent, along with stricter plain small diet, still flares, but most of time settled, but wonder what the hell did l have to wait in misery for months and go through scope, probably at a cost of thousands, when settled with common med, l could and would have bought it if l,d known. if they hadnt settled it then do scope scans. Scuse my rant, you did ask, and l know some people have wonderful gps who do extensive testing referrals and there are great specialists, so diagnoses and treatment can be given within a few month, lucky them. l also know there are others like me where sympttoms suffering restrictions go on years before helped.

      l think we all  realise that phycalogical problems can cause physical symptoms pain ill health, but l keep an open mind in believing if people complain about pain suffering for months years, they should be given the benafit of the doubt, listened to, many gps dont, some dont even get out of their chairs to examine patient, they always used to years ago, along with looking at tongue, eyes, feeling pulse, stethascope of chest, l think now they rely on blood tests a lot and they dont show all condiitons. l,d advice anyone if they feel sure its not of phycalogical reasons keep at them and dont be left to cope, its all time out of our lives, dont expect istant, but surely 6-9months should be long enough. Sorry its not a fun answer, lol, and l,m not pc, but l hope you get posative results to help you  next week. best wishes to all waiting for diagnoses treatment

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  • Posted

    I have THE EXACT symptoms! No tounge issues, I saw neurologist for muscle weakness and pain extremely fatigued too. My emg was negative but fasciculation ma were recorded. She called them begnin Fasciculations, for me it all started with a infection on the side of my mouth, after he cleared out 10 days later I started with all this we are symptoms of muscle pain joint pain fatigue and muscle twitching ( I had never had those before). My primary doctor freaked out over the twitch in a muscle weakness and told me to go see neuromuscular doctor to rule out any possible your muscular disease, he mentioned ALS and that put me in a bad downward spiral! The neurologist ruled out any kind of your mess of a disease and she things that this could be related to my previous infection. All my blood work came back perfectly, they ruled out inflammation like RA lupus lyme. My muscle enzymes are also good so they ruled myositis. After three months of the clear and all that infection I feel like my fatigue is overwhelming and also my muscle pain is Debilitating. I almost thought that maybe the pain is coming from the bones that is something that I want to bring up with my primary doctor. The rheumatologist told me that Phibro wouldn't come out of the sunlight that and My pressure points were negative to pain. So now I don't know what is going on with my body,after feeling like this for three months every day I worry that I will never feel The way I used to feel before this. To mention to you that you might have CFS? None of my doctors I've mentioned it, I am just trying to put a diagnosis on this weird symptoms.
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  • Posted

    Hi all,

    time for an update. Lung function tests normal, Myasthenia Gravis blood work normal, Chest X ray normal, Lung doctor discharged me. Went back to neuro for cervical scan, normal with slight degeneration but wont account for the symptoms I am facing. Now I am stuck with anxiety meds which has not helped thus far. But hey, one step closer to diagnosis.

    New symptom: Has anyone actually felt like the back of their tongue is sore/stiff and this stiffness goes down the throat a little and it causes you to slur your speech sometimes?

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    • Posted

      Glad for you nothing terminal showed up, but also left with symptoms worries and lifestyle affrects, with no cause found, so many are or been there and know what that feels like. think l recall saying to some expert, well know what l havent got, but can you find out what l have got. Have you seen rheumy yet, as think theyre one of main ones for diagnosing such as cfs, fibro,  ll do get sore tongue quite often and do at times get slurred speech, but that more when l feel  really fatigued, even on waking in morning at times, but more so with exertion to max for me.  Good luck with finding cause of  symptoms soon
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  • Posted

    Did you see a neuromuscular dr or regular neurologist? I would push for emg and nerve conducting test, have you been tested for myositis ? The neuromuscular dr said that myositis can be detected by emg, did you do any muscle enzyme tests?
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    • Posted

      I saw a neurologist that specializes in muscular issues. The neurologist doesn't want to do an EMG or a nerve conduction as he sees no clinical value doing it since my physical examination appears to be "fine" to him. I am not too sure what are the tests for myositis. But I have taken a creatine kinase blood test then shows normal levels. I guess this should roughly point that there's no inflammation of the muscles. Is there any specific concern that would point you into the muscle disorder direction rather than neurological?
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    • Posted

      I have basically almost all of your symptoms, the Fasciculations are so weird to experience for me as I had never had them before, I also have joints pain at times and my muscles feel fatigued(perceived), if a do a flight of stairs I feel my legs shaking. Also my arms muscle shake for nothing, I noticed weird pain and lack of stength in fingers too. Some weird symptoms I tell you! How long have you experience this?
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    • Posted

      Well, I read all the comments and wondering if you ever got the answers you were searching for as I have the same issues.  I have CFS and fibro.  Did you get a diagnosis?  How have you been?
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    • Posted

      Hi,

      The symptoms have wandered off and then came back awhile ago. Its always like an on/off thing. It does not display itself all the time, which is why the doctor could not give me a diagnosis. I guess I have learned to live with it. Wishing you well in your years.

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    • Posted

      Thanks for replying! Research Chronic fatigue syndrome also known as Myalgic Encephalomyelitis.  I think that name makes more sense for our condition.  I found my condition starting years ago and going through a spell then getting better only for it to return off and on until my last flair and it has yet to leave me.  I think it is progressive, but not too sure.  It is very difficult being taken seriously and treated with this condition as most doctors don’t understand it and some have never even heard of it!  They think it means we’re ‘just tired’ which is not even close!  It’s a neurological condition and very painful.  Also look into MS.  See if you can get a brain MRI.  They are similar conditions.  Don’t let the doctors bring you down and ignore your concerns.  Keep us updated! 
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