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Lessons from ME/CFS: Finding Meaning in the Suffering
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ME/CFS like MS?

Discussion in 'General Symptoms' started by .o.Amy.o., May 5, 2011.

  1. .o.Amy.o.

    .o.Amy.o.

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    Hello, I'm new here and just wanted to introduce myself and write a bit of my story. I'm very glad I found this place with such a wealth of information. I've been reading for a couple of months now and am finding it very helpful if not quite overwhelming. I am somebody who has been diagnosed with ME/CFS (Canadian criteria) and who also suffers from Anxiety Disorders and Agoraphobia but this is not the cause of my illness. I had two very sudden onsets that started this up for me despite the fact that I believe I was born with this disease and it was passed on to me by my mum. The first event that kicked it off was after I came off a medication when I was 17 and the second and most significant was last year when I took two herbal remedies for my immune system at a time of high stress. I have been very sick ever since then. It happened within a day and I thought that maybe I'd had a stroke because the whole of the ride side of my body became hyper sensitive, painful and developed a constant internal pulsing movement. I could barely sit down for about 2 weeks. I've also been diagnosed with Fibromyalgia and Multiple Chemical Sensitivity.

    My symptoms are very wide ranging with neurological problems, extreme weakness, pain and exhaustion being the most distressing. I can remember as far back as when I was around 10 feeling very weak and having problems standing for long periods as well as even younger having some odd neuro symptoms. They didn't bother me too much at the time. I'm pretty sure I have POTS and have done for many years but have never had a doctor take me seriously on that one so no diagnosis. I also have so many food intolerances I am down to eating meat and vegetables and nothing else.

    Lately I am starting to worry that my neurological symptoms are becoming so overwhelming that I may have MS and not ME/CFS. They never gave me the tests for MS even though I wanted them, in fact it was never even mentioned which I thought was odd because the first things that came to mind for me were Parkinsons disease, MS and CFS. My neuro symptoms can be so severe they leave me unable to do even simple things, for example I can rarely comb my hair anymore because every time something pulls on or gets blood to my scalp it sets off the nerves and muscle contractions in the right side of my body which are very uncomfortable and sometimes painful, I also get instantly dizzy and my feet burn. I'm sure you can imagine how crazy that sounds when trying to explain it to others. My neuro symptoms sometimes reduce in severity but never go away completely. I have a constant pulsing sensation that runs down my spine, into my right side and into the muscles in my legs where I feel that they are contracting and relaxing constantly. I know my immune system is implicated also because of my MCS which leaves me unable to go near anything that even smells strongly without having an immune reaction and getting sick. I now have problems going in the car because my balance is messed up and I get awful motion sickness and a severe increase in neuro symptoms. I have spent a lot of time this year in bed or lying on the couch too sick to move. I get lots of headaches, burning skin, nerve issues, perception and distance issues, tingling, freezing hands and feet, sensitivity to sound and light, a feeling as if I have rubber bands tied around my wrists and ankles, lots of pain in my limbs and at the base of my skull. I also get a strange symptom where I will suddenly have a huge surge of adrenaline (unrelated to anxiety) that comes on randomly and can last for days and sometimes weeks then it goes away just as randomly. I could go on forever with all my symptoms but I am going on a bit arent I? I know a lot of you have had to deal with similar and worse and I do feel fortunate that I am not always bed bound and can do small things. All of my blood tests came back normal except for having Gilberts syndrome and slightly low iron.

    Oh and one more thing...I'm absolutely terrified of doctors due to so many bad experiences and it was a huge ordeal just getting my initial diagnoses. I'm now possibly going to be going to a neurologist and I assume I will be told I am just a nutcase who has created my own symptoms because I have an anxiety disorder. If anyone could help me out and has any similar neuro problems Id really like to hear or anybody who feels their ME/CFS is similar to MS.

    Thanks very much for reading my story. I really do appreciate it as there is no one who really understands what living like this is like.

    Amy
  2. ukxmrv

    ukxmrv Senior Member

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    It's normal to ask what the differences between MS and ME/CFS are. That's why we need doctors who can use the right tests and do the correct diagnosis. As ME and CFS are diagnoses of exclusion (i.e. they need to exclude other dieases) then it can be a drawn out and uncertain process. When other diseases can be hard to diagnose themselves (like MS can be) then it just gets worse.

    What some new patients and new doctors don't realise is that ME is classified as a neurological illness and a range of neurological symptoms (can be severe) is quite normal. If you go back and read some of the earliest descriptions of ME in the epidemic outbreaks you will find lots of neurological symptoms.

    I couldn't see anything in your description of your symptoms that didn't sound like the ME I am used to. My neurological symptoms can be severe and widespread.

    That said, it is always worthwhile having diseases ruled out. Before MRI scans were common people with ME were often told that they had MS or atypical MS. They still have problems getting a correct diagnosis because MS often isn't straight forward to dx either. Some people are diagnosed with ME and then go on to find they have MS. This can take years to work out.

    If you do see a Neurologist they may well think that you are a nut-case as you describe. I've seen Neurologists who think that ME patients are nut-cases. The Neurologist I saw used nerve conductions tests plus MRI scans.

    Anyway, why not read up on the criteria for MS that doctors in your country would accept, then consider if you would like to see someone and have these tests? I did that. It may put you back into "limbo" for a while and will cause extra stress obviously. You may end up with some confusing test results and the whole process may go on for a long time. This can be quite normal when both ME and MS are being looked at.

    We all want to have the correct diagnosis. You have waited a long time for the ME/CFS dx and the Canadian criteria is a good one. It may be that you have MS but the neurological symptoms mentioned look quite normal for ME as well.
  3. Enid

    Enid Senior Member

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    Yes I quite agree with ukxmrv's advice - the symptoms are very familiar to me too and my Neurologist (various tests including MRI, CT scan and nerve function tests). MS was ruled out at the end of the day and he accepted ME, thought viral, and apologised for not being able to aid suggesting an ME specialist - more possibly to that one now. Pain at the base of the skull you mention (now eased) was particularly familiar. I do hope you find a good Doc to aid you now Amy.
  4. justy

    justy Senior Member

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    Hi Amy so sorry but i just wrote you a long reply and then my internet connection failed arggghhh! will try again when i have more energy, but welcome to the forum.
  5. Tulip

    Tulip Guest

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    Yes M.E. is very much like MS in regards to neuro symptoms. M.E. can cause seizures, paralysis, numbness and tingling, burning feelings, stroke like episodes etc. The list goes on!. M.E. causes on going inflammation of the central nervous system (the brain).

    I get numbness and tingling almost daily, I have had two stroke like episodes and one episode of paralysis. Unfortunately this is the M.E. that the public doesn't get told about.
  6. WillowJ

    WillowJ Senior Member

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    hi, Amy, welcome to the forum

    as has been said, ME/CFS is is a neurological condition has has similar symptoms to MS, and has some similarities both with that and myasthenia gravis as far as pathologies (neuromuscular problems, for instance). the only way to know what you have is by having testing.

    there are tests that can diagnose ME or support a diagnosis of ME/CFS, such as nk cell function, SPECT scan, and so forth.

    it's good to see a neurologist; hopefully they will run tests and try to figure your disease out. if they do not, try to get another one (ask your primary care doctor for a second opinion, and if it's someone you are comfortable with, tell her/him you are not happy with how the specialist treated you).

    if you can, take a relative or friend with you who understands your conditions, preferably a man. sometimes a doctor will respond better in the presence of a witness. if you are youngish (30's or less), though, I find they don't like it if you bring your mom.
  7. Boule de feu

    Boule de feu Senior Member

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    Welcome, O-Amy-O!

    Your story sounds just like me!

    In 1996, doctors told me I was probably suffering from MS.
    For the last 10 years, I have lived as if it were the case.
    In 2006, I was tested for it and I did not have the lesions on my brain.
    This is when they gave me the CCC diagnosis.

    I have or had many of the symptoms you are describing.
    My MCS is also very severe. The inflammation, too.
    At some point, I had what we call aquadynia.
    (could not stand water on my skin)

    You are not alone. I hope others will be able to give you some good advice.
  8. .o.Amy.o.

    .o.Amy.o.

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    Thank you everybody who responded. You've all been very helpful. I'm going to take a break from doctors for a little bit until I feel a bit better. I get so stressed by it all that it just makes me sicker and today I am back in bed after another appointment. I hope to eventually get the scans and tests done to rule out MS. One of the reasons I started to question my ME/CFS other than my neuro symptoms being so severe was because my disease didnt start with a virus and I read so many stories of people whose did. I feel like mine started with more of a stroke like attack. Are there many people who develop ME/CFS without a virus to kick it off?

    Ukxmrv - It's helpful to know that the neurological symptoms can be severe. I wish there was more information out there on this particular aspect of the disease. I know it would have saved me a lot of stress and trouble in the beginning trying to find this stuff out on my own.

    Enid- Im glad your pain has eased slightly. Mine increases and decreases depending on how sick I am that day. Usually it's one of the first signs that I'm getting a flare up. It starts with an itchy ache that gradual builds into a gnawing pain. I know if I start inadvertently scratching the back of my neck that it's not a good sign.

    Justy - Thanks for the welcome. Don't worry you always lose your net connection at the most opportune moment and there is always a power cut when you have about 15 unsaved files open. Sods law I think. Lol

    Tuliip - Thank you for this. I am starting to build up a good list of information on this disease now and I hope you are having some better days.

    WillowJ - Thanks for the welcome. I'm not certain I can get a NK function test in Australia. I read somewhere that it was very difficult if not impossible to get. I would like to get a SPECT scan though or any other scans of my brain that can be done without causing more damage. The last specialist I went to was leaning towards (based on my neuro symptoms and a long list of others) that I was malnourished because I am so thin and wanted to send me to a dietician. I only became so thin when I got sick and then on top of that developed so many food intolerances. I don't know my primary doctor very well. She is understanding about ME/CFS but didn't like it when I didn't go back to the last specialist. I'm thinking of finding a new doctor soon but its so stressful that I think I will put that off for a while too.

    Boule de feu - Thank you for the welcome. I hope your aquadynia had reduced down for you. I had allodynia where my bed sheets and clothes hurt me. It was like sunburn all over my skin. I think it might be similar to what you had. Fortunately it is much better this year and only bothers me on very bad days. Did your ME/CFS start up with a virus? I'm curious about the triggers.

    Amy
  9. sickness

    sickness

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    Nearly every doctor I have been to thought I had MS, until my MRI's came back negative. Then they just kicked me out the door, with no help or advice. Apparently they were only interested in helping me when they thought I had MS. One neurologist even told me I should consider myself fortunate that he spent any time with me at all, after my MRI was negative!!

    When I read up on MS, I thought 'this is it!!'. Even down to feeling worse in hot weather. Comparisons between MS and ME seem pretty common. They are very similar diseases, I think.

    take care, ness
  10. justy

    justy Senior Member

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    Hi Amy, i just wanted to say you are not alone with the anxiety and agoraphobia. i have had two bad bouts of anxiety and agoraphobia, both lasting a few years and both coinciding with my M.E being at its worst. This time it was triggered off by a very severe reaction to a serotonin reuptake inhibitor. I became almost psychotic and suicidal after just one dose of Citalopram. it took me ayear for my system to calm down but i am still left with the agoraphobia. Interestingly there is a lupus doctor in the uk who says that a history of episodes of agoraphobia is commonyl seen in Lupus patients - i often feel that my M.E is more similar to Lupus than M.S although i have had quite bad cognitive dysfunction and severe muscle spasms and jerks(still get these all over my body but not as bad) the latest thing ive developed is a droopy eye when i am going downhill, i think its called ptosis, one eye looks quite normal but in the other the eyebrow is meeting the eyelid -its not a good look (lol) One similarity my symptoms do have with MS is bad eye problems -double vision. tunnel vision, blurred vision and severe eye pain, but i think this also ties in with Mitochondrial dysfunction which i have tested positive for.
    Take care, Justy x
  11. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Yes, welcome. I don't agree with Willow, but perhaps it is just because of my experience with Neurologist, I think they are rather useless. I saw 1 for a couple of years, tried all kinds of drugs that did not help, just increased my pain meds, which was heading me down a slippery slope of more and more pain meds. Not a way to go through life.

    GG
  12. Boule de feu

    Boule de feu Senior Member

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    My neurologist was also pretty useless. She did not want to be bothered. When she found out that it was not MS, she sent me back to my GP with a rubbish report. When I saw my GP, he told me: "Obviously, she has no clue what she is talking about." I knew he was right because the night before going to see her, I had the worst erythromelalgia flare I've ever had. She did not know what it was and was not about to find out. I was also dealing with severe vertigo and migraines. She did nothing for me. :-(

    But i'm sure not all neurologists are like that. I sure hope not!
  13. WillowJ

    WillowJ Senior Member

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    GG, I'm sorry you had a bad experience. It's difficult when a doctor gives something which turns out to be wrong for us.

    the only treatment I have ever been offered from neuro is NSAIDs (for fibro/MPS) and stimulants (for CFS), but neuro is the one who can check for MS, myasthenia gravis--justy mentioned a droopy eye which is a flag for this, although one can have MG without--seizures, and other such things that should be ruled out before settling on a diagnosis of ME/CFS (although using tests to include ME would help, but most doctors are unaware that these are available), particularly when such strong neurological signs and symptoms as Amy mentioned (and as are common in ME/CFS) are present. Also neuros can treat migraines which are often comorbid.

    one thing you might check on, Amy, is whether you are scheduled to see a psychiatric neurologist. I have seen two of these (was not aware of it ahead of time) and they were both jerks who 1) seemed never to have heard of and 2) didn't believe in, CFS/ME (the first was prior to my getting a diagnosis).

    I think in any specialty there is a wide variety of approaches and opinions. neurology should be evaluating and treating ME/CFS (along with immunology. etc.), because it does have a neuromuscular component as well as other neurological findings, but most have no idea how (nor are they the least bit aware that ME/CFS has neurological pathology). So I agree with GG that, for the time being, neuros are largely useless for ME/CFS.

    I have not gotten much help from neuro (although I did see one who believed in CFS) except for migraines, but again it is where they test for and diagnose or rule out MS, MG, etc. I think they also take care of the official mitochondrial disorders. If you actually have (or also have) any of the official neurological diseases other than ME, you will get better care than if you have (or only have) ME/CFS.

    I also have been booted out the door after being diagnosed "not MS".
  14. WillowJ

    WillowJ Senior Member

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    I forgot... I said one way to check how to tell you might not like your neurologist, but I forgot that there's a way to check how you might like your specialist (neurologist or any other): try to see a research doctor.

    Research doctors are much more apt to be interested in looking at the actual literature, contacting the good research physicians, and otherwise learning about the actual disease you have (or think you could have).
  15. Tulip

    Tulip Guest

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    A rheumatologist is a much better person to see than a neuro for pain. A rheumotolgist can also check someone out for myasthenia gravis as can other specialists if those ones are useless. In fact one of my family members was diagnosed with MG by a gastroenterologist, because the neuro and other specialists were useless!.

    Amy - You can get a NK test done in Australia but it is highly specialised and only done in one or two places in the entire country. So it's a lot of hassle and you have to get your blood sent to them unless you are lucky enough to live closs by. That's what sucks about Australia, our tests are still in the dark ages to some degree!.
  16. .o.Amy.o.

    .o.Amy.o.

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    Im sorry for your bad neurologist experiences Sickness, Ggingues and Boule de feu. Ive also had bad experiences with doctors in general which is one of the reasons I tend to avoid them like the plague unless I absolutely have to go.

    Justy I am the same as you in regards to my anxiety and panic attacks. They are significantly worse when I am sick and I have noticed that when I am feeling better they dont bother me much at all, I honestly believe that i wouldnt have developed my agoraphobia or OCD (which I also have) to the extent that i have now if I had not got sick. I think in my case and it sounds like yours too that there is a strong biological cause for the panic attacks. It seems there is very little research done in these areas though. I also have some eye problems but not severe. I went from being able to see reasonably well to suddenly having double vision.

    Willowj Im pretty sure the neurologist is an ordinary neurologist. Thanks for the warning though. Ive been to a psychiatric neuro a few years ago which was another awful experience and a memory I'd like to erase.

    Tuliip I doubt very much that my doctor would do the NK function test for me if she is able to. She seems to want to send me to other ppl and they so far have not been the types who would do those tests either. I will ask her next time. I agree that Australia does seem to be a bit behind.
  17. taniaaust1

    taniaaust1 Senior Member

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    Amy.. what state are you in if you dont mind me asking? Someone may be able to direct you to someone helpful if they know where you live.

    My ME has been very MS like a times.. complete with even one leg drag with a floppy foot like you see in MS. I also was loosing hand control and hence suddenly finding myself dropping hot cups of fluids etc. I also had loss of body sensations.. couldnt feel hot water on body parts.
    Its also been very parkinsons like at times with tremors etc.. to the degree that nurses mistook me as a parkinsons patient due to my symptoms they could see when I was in hospital one time.

    Ive had 3 or 4 MRIs .. one due to partaking in ME/CFS studies (another reason why I ask what state.. I may be able to direct you to a study in which you can have a MRI) ... and the others after loss of consciousness and another after doctor rang ambulance due to my uneven pupil and responses and my reflexes being abnormal (hyperreflexia when my knee is hit .. and in another test my toes curled the abnormal way on foot stroke.. Babinski sign.. something which is found in spinal and brain disease and MS). Ive also had a spect scan done during a ME study.

    As far as neurologists go.. Ive only found them good to rule things out and doing tests eg I had two neurologists at Flinders hospital put me throu a Romberg's test (it was postive due to the ME/CFS, they said they've never seen anyone go down as fast as I did). As soon as they realise you have ME/CFS with abnormal results coming up.. they will kick you out of hospital fast as they dont know what to do with you.
  18. justy

    justy Senior Member

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    My Gp has recenbtyl decided that hes not sure if i do have M.E and now says he has reffered me to an endocrinologist as my symptoms look endocrine based? who knows.
    My approach is to not tell him i have an M.E diagnosis - my GP wont have said this either as he wants to come at me with "fresh eyes" im quite happy for them all to play around with me as i now take the approach that i dont get my hopes up that they can help me or find out what is wrong with me. Ive been ill for a long time to varying degrees and i cant stand being mucked about by doctors. im prepared to go just in case, but i dont pin any hopes on it at all. Does anyone have any idea why i would be sent to an endo?
  19. taniaaust1

    taniaaust1 Senior Member

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    He may be worried you could have a thyriod issue?... or maybe Addisons (if you've ever come back with low cortisol).
    (One of the ME/CFS specialists Ive seen is an endocrinologist thou he's now doing studies in autonomic and brain stem issues in ME)
  20. .o.Amy.o.

    .o.Amy.o.

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    Tania,
    It sounds like you've been through way too much. I hope things are a little better at the moment. I'm in South Australia like you by the way. I never thought about ME/CFS studies. I didn't think they would have many here. How did you join these studies? was it through your GP or..? I guess I don't really assume a neurologist will be helpful to me other than ruling out MS. I don't want to sit there and get the patronizing little talk where everything gets attributed to anxiety but there aren't many ways around that with doctors in my experience. I still want to get the scans done though. I know there is something wrong with my brain.

    Justy - I'm not sure why your gp wants to send you to an endocrinologist but I hope you get some more answers from it.

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