Invisible Symptoms in MS Part 1 - National MS Society



hello I'm Kate Milliken and welcome to ms online no two people have exactly the same MS symptoms and each person's symptoms can change or fluctuate over time many of these symptoms are referred to as invisible symptoms in other words no matter the challenge they pose to a person with MS those around them are unable to see what they are coping with in this first of a two-part interview we'll explore what these invisible symptoms are and what we can do to manage them we'll be talking to dr. Rosalind Culp who is vice president of the National MS society's professional resource center welcome to MS learn online dr. Cobb quiet okay thank you so first and foremost how would you define an invisible symptom and what are they well I think the easiest way to think of an invisible symptom is something that if you walked in a room experiencing that symptom the people in the room wouldn't know about it so you might be extremely uncomfortable with pain or fatigue or foggy thinking that's just not going the way you want it to do and and nobody would know how much difficulty you were having and there are a lot of symptoms in ms that are invisible to others so can you give a range of what one might define as an invisible symptom sure so if you think about it invisible symptom means any symptom that's not visibly obvious to other people so if you start at the top of the head and work down cognitive changes are a very common symptom of MS that can certainly impact a person's quality of life and other people around you may have no idea that you're struggling with memory or concentration or decision-making you could experience significant changes in your vision but your eyes to anybody around you look just as beautiful and normal as they did before and yet you're struggling to see the world in a steady clear way it's very fatiguing very has a huge impact on activities every day pain is a very very common symptom and ass it wasn't that many years ago that people with MS we're told that MS didn't cause pain but we know it it can cause a variety of strange sensory changes numbness tingling burning sensations and severe severe pain that affects the whole course of the day and the ability to sleep at night without some education people wouldn't even know that you were experiencing that bladder and bowel changes very common in ms and unless somebody sees you dashing off to the bathroom in the middle of an important conversation they might never know that you're struggling to maintain control over bladder or bowels all of these things take a huge amount of energy which adds to yet another invisible symptom which is the fatigue that's so common in ms so we know that there is a unique kind of fatigue caused by ms itself by the damage to the nerve and nerves in the central nervous system but if you think about all of all of the energy it takes to cope with pain for example which can be so debilitating distracting and depressing that that's just adding on to the invisible symptom of fatigue and I think we also need to mention mood changes in all of this because we know that mood changes including depression are very very common in ms both as a reaction to all these other things we're talking about because ms can be depressing but also as a symptom of the disease itself and certainly that's not necessarily visible to friends family and people in the workplace so you know from the top of the body down people are experiencing things that others can't see what I'm curious about is you know the fact that they're invisible does that make them harder to treat I mean how are these invisible symptoms managed well I think that it's important to recognize that ms physicians know the range of symptoms that can appear so if one is seeing a physician who is very familiar with MS that doctor is likely to ask about a whole range of symptoms but a health care professional who is less familiar with MS can't read a patient's mind may not ask about all those things so it means the people who are living with MS and have a lot of invisible symptoms need to make sure that they are alerting their health care professionals about all the symptoms they're having one of the big challenges is that people with MS don't necessarily know that a symptom that they're having is related to their MS so if they have extreme fatigue but they don't know that that's a symptom of MS or they're experiencing bladder or bowel changes and it's never occurred to them that that may be related to their MS or even pain they don't bring it up physician might not ask it doesn't get treated so the very very first step for people living with MS is to be educated about the kinds of symptoms that can cause and then make sure that they communicate that to the doctor or the nurse during their regular visits then the doctor and the nurse can begin to offer various kinds of management strategies and part of your question is how do we manage them well I think there's a whole range part of it is could be a medication to treat a symptom there may also be rehabilitation strategies that have nothing to do with taking a medicine but may have to do with exercise or using a different kind of adaptive aid to help you with something or it may be just learning how to manage your environment and your body and take good care of yourself so that the symptom is handled so it's sort of teamwork between person with MS and the healthcare team to make sure they're using all the possible strategies to manage each symptom so one of the things that you hear about ms which is true is that it's always a very individual disease the other thing you hear when you talk to people with MS is I say you know it's so frustrating for me because I come in and I tell someone that I have MS and they say oh really like you look so great this seems across the board is something that the Emmit people with MS actually resent in some ways from your experience can you articulate about that I think it's actually a major challenge for people particularly early in the disease you know we all like to get compliments somebody says gee you look great well we like to hear that but I think sometimes when it's a family member or a colleague or even your boss is saying that it can be a little bit of a two-edged sword it can be paying you a compliment or it can be also saying well I don't get it if you look so good how come you're not doing what I need you to do how come you're not keeping the house clean or getting heels on the table or getting your work assignments in on time so it's requires a real educational process so that the people in who are important in your life understand that what they're seeing isn't necessarily the full picture of what's going on inside you and if you don't tell them they're not going to know nobody can read your mind so you kind of have to put on your teaching hat and be prepared to educate all those important people in your life about what what's going on might affect how you feel on a given day how you behave or how you perform on a given day I think when most people think about seeing someone who's worsening you know you see somebody who's limp is getting worse and you think they're progressing or youth it you see someone who goes blind in one eye and you think wow that's really bad invisible symptoms like fatigue in some ways to a layman may not seem like it's as bad from your perspective being in the MS community is it something that is taken as seriously as something that's a little bit more dramatic to see well I think we are always more impacted by the things that we can see because the things we see we can kind of relate to and figure out try to figure out how that would feel if that was happening to us so yes I think the visible symptoms always have more impact which is why that education piece is so important but in terms of how symptoms affect people there's tremendous variation from one individual to another so for somebody who has really debilitating t-they will say that is the most challenging part of their ms they cannot get through the day and do the things that are important to them because they are so exhausted for somebody whose whole lifestyle depends on their physical activity level somebody who is a ballet dancer or a lead or repairs of the roof or the TV the TV cables physical impairments are devastating because they change their whole lifestyle for somebody for whom their ability to think and reason and problem-solve is the core of the work they do teacher a lawyer the accountant then that invisible cognitive change that is can be so common in ms is the most devastating symptom so I think the best way to think about it is the interaction of a person's particular symptoms with their lifestyle and they will be the best judge of which of their symptoms has the biggest impact on their quality of life and their ability to do the things that are important to them with all of these symptoms that we're talking about in the range of FMS how do you know that all of the symptoms actually are MS I mean couldn't it be possible that one of the symptoms actually is an MS and there's something else that's wrong with you I'm really glad that you asked that Kate because I think it is important for for people with MS to recognize that MS can cause a lot of different symptoms so they need to know what those can be but not to fall into the trap of assuming that everything that they experience or everything that happens to their bodies is caused by MS so once again it's important to make sure that you mention any new or changing symptom to your healthcare team because they can help you sort out is this truly an MS symptom or is there something else going on that we need to figure out fatigue is a great example of this because we know that MS fatigue is a very common invisible symptom but before the doctor will diagnose ms fatigue he or she is going to look at lots of different things that can contribute to a person's fatigue interrupted sleep from sleep apnea for example is it is very important to identify sleep apnea is not caused by MS and it's something that needs to be carefully treated because it has other risks to it but it could get lost if the person living with MS assumes well I'm just tired because I have MS so doctor takes a very careful history of a new symptom really tries to make sure that it's an MS symptom and that it's not something that your general doctor really needs to be taken care of because it's a whole other health condition I actually have had live this example of thinking that maybe I was going into a sensory relapse because I was having such terrible tingling in my hands and it was going in my wrists and the doctor said you know Abed I think he didn't say you know up here but he said you know what I think you've got carpal tunnel syndrome and he was totally right he did two tests and it was very clear and that for me is somebody with MS it was a huge relief right you know it actually putting in that boundary find out there was something else wrong was it was a better solution you know in that instance fix it yeah so we can't assume that everything is a direct result of MS and it's only by really talking symptoms over with the doctor or nurse that we can weed out those things that are a mess from those that aren't right thank you dr. Cobb for giving us a little bit more insight into the world of invisible symptoms in our next conversation we'll continue to learn coping techniques for these types of symptoms we'll see you then this is Kate Milliken for MS learn online you




Comments
  1. I had a friend who had MS. I emailed her about my symptoms and she said I had told her a lot more than she had told me about herself. She passed away April 1 at 64 he heart gave out.😪 Doctors kept saying I had no seizures and I finally stopped having them but wake up feeling I had one. I got dog bitten and in ER a nurse brought in a large stack of papers those were records of my seizures. I was awakened with painful and aching arms and hands with tingling 3 days ago. This morning I was all flighty feeling. Doctors will not even act like they believe me they act like I am faking.

  2. How high of a chance can you get Ms if a family member has it like a brother or sister or is it at all a risk factor

  3. I have not been diagnosed with MS but I truly feel that I have it all these years I've been saying something to the effect oh that hurts oh it'll be okay oh that hurts that's nothing oh that's weird it's nothing year after year after year mind you I always felt that my pain tolerance was high for my ailments I needed nothing not even A B C powder well anyhow not too long ago I felt like I was going to have a heart attack I was not feeling really good at all already been having problems with my hips stiffness just thought it was my hip dysplasia getting a little worse as I've gotten older my sister found out that I might I felt like I was going to have a heart attack and she had had a stroke when she was in the hospital a night diagnosed her with MS my daughter found out I wasn't feeling good for my sister she told me about my friend Heather both of these women had Strokes and both of them are in the hospital when they found out they had MS basically my sister wanted me to try and be diagnosed before I had a stroke or had a heart attack I'm very devastated by the fact that I haven't even been diagnosed and I'm falling apart so one thing I found out was my hip dysplasia wouldn't really stop me from walking but the MS could so this past week my brain is saying legs move and my legs are sayin no…I guess my question to all this is how do I discuss this with my doctor with all these crazy symptoms that I have that I've been blowing off for years … That this is not hip dysplasia and I don't want them teste for all kinds of thing to later find out that it is really MS…. desperate to find out ASAP

  4. Find a neurologist that is a psychiatrist as well !!!
    You’d be surprised how many have “psychologists”
    degrees, after neurology,
    People that have a crawling feeling OR an itch you CAN’T scratch……..go straight to the neurologist,
    I was misdiagnosed by dermatologist and doctors for two years,
    Finally could afford to see my neurologist, now I’m going for a brain MRI.
    I’ll just be glad to get some more info from her, good or bad…….this has tortured me for two years without being taken care of 🤨

  5. Hate to speak out, but this whole MS thing is starting to sound like bullshit because there are a lot of videos and information that are helping a lot of people beginning to feel better, but only when they tend to self-treat, leave the country, and find their own cures. I only say this because I used to work there years ago. All those people were suffering, and the only thing that has really been done, is a bunch of assholes lining their pockets in the name of the devastating effects of MS.  Bullshit.  You KNOW there are therapies and treatments to mitigate or even solve this problem, so fuckin get on it! the truth is out..

  6. “be prepared to educate people in your life” . Great advice but what if your brain is struggling to keep thoughts organized and to prioritize what needs to be communicated? You have to have a clear mind to be sick. 😳

  7. I am 11 and doing a 30 mile bike ride to raise money for MS and after watching this i see how bad MS is

  8. It was in 1978 and my parents primary care told my father that my mother was just drunk? With 5 of us kids at home to care for! It wasn't until she seen the optometrist that she first even heard of MS. Shortly after that was the neurologist and then after that she was in a wheel chair! I was 12 and terrified I can't imagine how she felt! All these years and she's never complained! She's the strongest woman I've ever known ! Love you mom!

  9. I've had the "you look good" thing happen too often. It's been hard for me because I only new my pathology as chronic fatigue and only now am I hearing MS being thrown around as a possible diagnosis. Invisible symptoms are so hard to describe.

  10. Thank you. I am still trying to wrap my mind around this diagnoses. I thought at my age it was impossible , guess I was wrong, My care team is wonderful and I feel blessed to have so many people on my side.

  11. Neurologists for MS just want to put you on very dangerous drugs whose side effects are even sometimes worse than MS, and can actually kill you.

    My Neurologist here in London leads a very luxury, leisurely life and you can tell by his treatments. He knows just general things that you can figure out yourself on the internet. He makes plenty per hour to give me glib, general advise. It is a joke. I am clearly on my own with this.

  12. “You know what babe” 😂😂😂 why didn’t they edit that out? But on a serious not y’all. God promises healing if we just believe. And I’m speaking from experience. I am also a type 1 diabetic. Was diagnosed when I was 13 year old. A year ago I developed eye complications and had to get injections in my eyes. At first I cried at the thought that I can go blind. I was depressed, I felt hopeless and would ask God why me. Same way we all feel about are MS. Then I prayed and read healing scriptures everyday. Till I had no doubt in my mind that my eyes would be healed. And they are. No more macular edema. Faith will unlock Gods healing. I’m not all the way there with the MS. But I know I will be healed. Have faith y’all . It’s hell I know. But through Gods stripes we are healed. Now let’s believe it. God bless

  13. Well isn't MS diagnosed with a process of elimination?  There isn't one solid test that says YOU HAVE MS.  It's just that they eliminate all of the other possible causes of your symptoms and that can take a lot of time.  Physicians, because of time restrains from insurance,  don't seem to be able to listen to patients like they used to 30 or 40 years ago.  They rely way too much on tests and imaging to diagnose instead of just taking into account what the patients are telling them.  If it doesn't show up in a blood test than you don't have anything wrong with you and we all know that isn't right.

  14. I made a small donor fund for our local MS organisation.

    http://whydonate.nl/marcel-van-hooijdonk-strijdt-tegen-ms/event

  15. I was diagnosed with Multiple Sclerosis (MS) in October 2011, at the age of 44. I woke up one morning with numbness in my lower back and legs, I couldn't feel my feet touching the floor. I saw my doctor and had an MRI to see if I had a disc problem, it was negative and she told me she feared MS. I was sent to a neurologist, had two more MRIs, and was told that night that I have four lesions on my spine MS. I tried every shots available but nothing worked. In 2015, my neurologist and I decided to go with natural treatment and was introduced to NewLife Herbal Clinic natural organic MS Herbal formula, i had a total decline of symptoms with this treatment, the numbness, terrible back pains, stiffness, body weakness, double vision, depression and others has subsided. Visit NewLife Herbal Clinic official website ww w. newlifeherbalclinic. com or email [email protected] newlifeherbalclinic. com.

    This treatment totally reversed my condition! I am strong again!

  16. sometimes I can sleep 17 hours a day, not les then 9 hours in a good day, because that fatigue.

  17. It is not only MS FOLKS that have to deal with illness that can't seen. That people just don't get your illness.

  18. My worst symptoms lately are that I am losing my sight. I know that I am going blind and that scares me the most.

  19. Another fantastically informative video, having been diagnosed with MS in December 2015, these video's have been an amazing source of information and listening to other peoples stories has really helped me cope.

  20. Stem cells have shown great results in treating MS with no side effects even if you are a non-responder. So why isn't it standard of care in this country? Because the health-care system in this country is run for the benefit of the pharmaceutical companies not for the health of the public. If they can make more money selling their garbage drugs, laden with side effects, that is what they will do.

  21. wow.. that's crazy you guys. I went to the er two weeks ago due to double vision, he said there's nothing wrong and that I need to be in a mental institution.. however my symptoms has gotten worse day by day. I'm on my 6th neurologist since I've moved back from grad school in Savannah. all of my doctors have said that I'm crazy or stressed out, they don't care. until recently I went to see a chiropractic who first day found where I was being targeted from it's in my neck or cervical spine, holy crap he should that that part controls everything my symptoms are. he also mentioned that my brain isn't getting the right singles to do the things I use too. so basically I have to learn how to walk all over again. I strongly believe I have MS.. in my heart I know that's what it is. he said it looks like it is but he's willing to figure out whatever it is.. so why can't my neurologist figure this out instead of saying idk what's wrong with you, or are you stressed out.. if someone ask me that one more damn time I'm going to scream at the doctors office.. it's so crazy that I had to go see a chiropractic for him to figure the first step out

  22. i agree when i saw a neurologist i was belittled and my symptoms downplayed because of a history of depression,,, very demeaning,, i havent been diagnosed with MS but i have some symptoms which are concerning me,, i need to get a MRI

  23. What I need to know is how to get so-called "health care" professionals to listen and respond at all when patients report their MS symptoms.  Instead of being evaluated properly, I am mocked and psychologically abused by so-called neurologists and denied treatment every time I speak out.  My suffering grows more severe with every passing day and whenever I reach out to the only neurologist I'm allowed to see, he deliberately blocks access to any medical intervention, delays or refuses MRI scans, and always claims his actions are a "misunderstanding."  He always blames his underlings, like receptionists, for failing to be a physician.  How can I possibly continue to live in this situation?????????

  24. so I have the symtoms of ms my doc did a mri cause I have a spot on my brain and I have peripheral neuropathy in my arms do u think I should get a spinal tap cause he said the mri was negitive

  25. Long overdue for Docs to stop labeling patients as "mental", or "malingering", and shuffling them to other departments, or out-the-door.
    Long over due for Docs to stop telling lies about what MS and similar neuro issues are, such as telling people there's no pain.
    Long overdue to stop only relying on blood tests to rule-out.
    Signs and symptoms go on far longer on an invisible level, than generally noted.

    When a patient reports a laundry list of symptoms they're experiencing, which all point to a specific diagnosis, and Docs blow them off, nothing fruitful can be accomplished; that leaves patients having to figure out how to fend for themselves, often with great difficulty.
    The very worst, is being told "get over it", and "it's all in your head".  
    My Group Health Primary Care Doc told me "why should I order lab tests, if you refuse to take drugs I can prescribe?" [!?!?! SO wrong on so many levels!]  
    I told her, "So both of us can know what's happening in my body, and, make actual informed decisions!".  
    She changed the subject.  
    Asked about it over a year later, she denies saying that, and invites me back to see her….[!?!?! AS-IF!!]
    From many encounters with similarly strange Docs, I deduced over 25 years ago, to do everything I could, on my own, because clearly, mainstream medicine was Not helping anything, for me. Been using alternative modalities for about 30 years, now, though have been slowly progressing, despite all of it. Probably much slower than average progression, though.
    Alternative methods to help reduce symptoms, and delay advancing of ills like this, CAN and DO work.

  26. I am buffled how could a doctor, a physician tell me the following : "Doctor, I have burning pain between my shoulder blades, I have every day bad headache, my legs hurt, I get dizzy at times, I am depressed and think about suicide a lot" – her reply was : "Hold your horses. one symptom at the time, for other symptom we need to schedule different appointments" – each visit is $250…….I switched the doctor and my new doctor is great but wth why such people even practice medicine who don't give a crap about your array of symptoms but send you home with anti depression medicine when you have debilatating pain and almost climbing walls from pain and "flare up" days

  27. I got diagnosis after seeing pain dr for multiple back issues&legs-after losing a lot of weight&lost bladder control,along w/prior symptoms&past dr reports from 15yrs+ did he find two brand new curves just appear in my spine along w/lessions-this one dr put this puzzle together that many drs together for yrs couldn't figure out!!!-was told a severe infection(had one for yrs as child undetected that made me unfirtile)that turned into autoimmune disorder(undetected for most 20's from childhood)that turned into CIS MS-which's now full blown since few episodes-now is it true a infection can create all this?or could it be mixture of a genetic issue too that skipped 4generations(my gg grandmother in 1800's on father's side was bed ridden w/back&leg issues)?-I have many diff'symptoms tjat come&go even had sexual issue called blue labia(like balls)that has been since 20's-just it like other symptoms significantly increased tramendisly(I used to spell very well&never had dislexia&have those issues now too)

  28. Well, hi. I am Yasser Kurdi of Amman,Jordan. Thanks to M.S society in England for sending me this report — documentary, bulletin.
         My vision is perfect 6/6 but my only M.S, problem is my (left leg) and that's where I get the imbalance. I limp on my (left leg) when I need to walk, so I – hold on – to my walker device. (God) how much much much I have cried.
     If I will return (try to) to my previous Job at the office, I fear they will not accept me. My (late) father passed away in the late 90's.  
     He was exerting too too much work in his work, and that's what has killed him. He was a Pharrnacist, he got got kidney cancer. On the average he was a workaholic. (God bless his soul).
    What else can I say   I have a headache, I must go

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