Invisible Symptoms in MS Part 2 - National MS Society



welcome to ms online I'm Kate Milliken in our first program on invisible symptoms we learned what these symptoms are and what we can do to manage them we'll continue our discussion of invisible symptoms with dr. Rosalind call vice president of the National MS society's professional Resource Center last time we talked about how frustrating it can be when the people around us don't see many of the challenges that those of us with MS are living with every day in this program dr. Cobb will help us with some coping mechanisms that we can use in dealing with these invisible symptoms dr. Cobb you know when I was diagnosed in 2006 I remember there was such a paradox in my mind of getting such a serious diagnosis from symptoms like fatigue and numbness and tingling and I'm just curious from your experience on on whether you have a similar feeling with other patients I think that that's a very real experience for a lot of people it's scary to get a diagnosis of MS but you can look at yourself in the mirror and you look the same as you did the day before you got this diagnosis but you know that your body feels different or your mind isn't functioning the way it was and it takes people time to figure out what that's going to mean in their lives and how to get used to the idea that they're living with these symptoms that just aren't apparent to those around them I remember talking to people and saying you know how are you feeling at me saying I'm not feeling well and I would try to kind of say things in kind of simple descriptions you know well you know I went to bed at 8:00 and I woke up at 10:00 and I felt like I didn't get any sleep or I'm taking a step and there explode I feel like they're explosions of nerves you know coming up my leg have you found that people try to articulate what's happening with them through kind of metaphors like that to get get the bride to think that is some people do that and do it very well some people actually need to be helped or taught how to do that because the the symptoms are so intense for them that it's it becomes hard to that other people can't see it can understand it so they have to be encouraged to use descriptions like that metaphors like that somebody who's very fatigued for example will say I don't know how to describe it except to say it's like putting five hundred pound weights on my legs and slogging through mud that helps other people understand the intensity because if you just say you're tired all of us feel fatigued from time to time or we get sleepy if we've had a bad night or whatever so to just say I'm tired is never going to convey the extent of that m/s fatigue so people have to come up with examples to use metaphors to you so I think that's very helpful are there other times where it's a good thing you know it might be something that you don't want to tell someone your symptoms absolutely if you're in a work situation for example and you're able to do your job relatively comfortably and you're not in a position where you need to ask your employer for an accommodation in order to do a job the National MS Society generally advises people not to disclose so if the symptoms that you're dealing with are invisible and nobody's asking questions and there's no obvious impairment they might choose not to discuss those symptoms at all not to share the diagnosis until there's a need to so for those people if they can manage those invisible symptoms comfortably they put off whatever decision they have to make about disclosing to their employer if those invisible symptoms however become so debilitating for example severe fatigue or a vision problem or significant difficulties with bladder or bowel then that person may need to disclose those invisible symptoms educate their colleagues and employer about it so they can request the accommodations that they need to be effective in some ways the whole concept of invisible kind of exemplifies what ms is compared to other things that people may have can you do can you relate to that sure I think that's why we talk about the iceberg image all the time with people with MS but if you look at the iceberg you see the tip of it above the water it's very clear those would be the visible symptoms of walking impairment or balance impairment that somebody might have but below the surface all the symptoms that you can't see like that bottom of the iceberg which is actually much bigger than what shows above the surface of the water so I think for many people living with them as the invisible symptoms make up the bulk of their experience of the disease from day to day very very challenging from your perspective what are some coping mechanisms that people could have for certain symptoms that they may experience well clearly the coping mechanisms are going to differ depending on what the symptoms are and how they interfere but I think the very first coping mechanism is to be educated about MS and the kinds of invisible symptoms it can cause because the first thing one has to do is make sure that you're describing all of those symptoms to your healthcare team so that they can begin to help you manage them I think the second thing is to know your body so for example if heat causes your vision to worsen or causes your fatigue fatigue to grow or your your balance isn't as good then that's a signal that your body is stressed or overheated and so you learn to read those signals from your body so that you can start to do those self-care things I think it's also incredibly important to figure out who are the people in your life who do need to understand your loved ones the people closest to you they have to know what's going on or they don't know how to relate okay and and so figuring out whom to tell about the symptoms how to describe them in a way that they can understand or what kinds of educational materials you might want to share with them about those because I think one of the things that's tricky about these invisible symptoms is that because people can't see them they are so easy to misinterpret so unless a person is educated and realizes what a common symptom fatigue is NMS a spouse or a child of a person who has a lot of fatigue might just misinterpret that is you're not interested or you're too busy to do something with me or you'd prefer to do something else than do something with me so when we educate people about the fatigue it's not to me in my fatigue this is a common symptom NMS it makes it easier for family members to get their heads around it one of the things that I totally appreciate working with the physician myself is you know they do take those symptoms seriously and I think that that type of you know space where they can understand I mean you could tell them anything and and they would really listen and try to evaluate it in terms of managed care and and I think that that's been very helpful well and and that brings up another point and that is one of the reasons that support groups can be so helpful is that somebody who's been dealing with invisible symptoms and nobody seems to get it they go to a support group with other people who have MS and are dealing with similar invisible symptoms and suddenly they're surrounded by people who get it that's right and it's a feeling of total kind of acceptance I feel normal here I don't have to be explaining myself all the time because when I talk about a symptom I have I can look around them and people nodding smiling and I feel a lot of support from that so that's one of the reasons that we really encourage people to find others that they can share their experiences with and connect because it's such a feeling of validation when the rest of the world just looks puzzled yeah and I think not even if somebody doesn't have the exact same symptom just hearing about somebody else's MS experience like wow that's a really weird symptom you're having like I'm not having that but it gives you such a nice sense of perspective which i think is really helpful invisible symptoms very very challenging but we can do something about them so getting people to again share that information with their health care provider and get that help will make dealing with the rest of it easier understand it's really the nature of the disease that's right doctor cough thank you so much and it's really nice from somebody with MS to feel such a sense of empathy for someone that doesn't have it so thank you thank you if you would like to learn more about MS symptoms or get more information on living with MS go to wwm s society org this is Kate Milliken for MS learn online thank you for joining us you




Comments
  1. The attacks that I have had, weak left leg (which brought the diagnosis), double vision & sensory issues in both feet. After cortisone, I recovered but never 100%. In the morning, when I'm fresh, my walking is strong. But after a while, my legs feel like I'm walking on noodles.

  2. My arms and hand tingle & hurt & when I sleep I wake in pain
    Is this normal I aso fall for no reason at all & my Dr will not listen to me & I don't know What do do. Can you sent me a link for help? I live in North Alabama & I'm on medicaid.

  3. I work in retail and people get impatient with me. I can't explain to every one what's wrong. Any advise?

  4. I have Relapsing/Remitting M.S. And every time I go to a Dr for a pain or symptom of any kind the first thing I get told is that it's a symptom of M.S. and that scares me to death. because….what if it is something else? I have been having horrible pain in my stomach for several years now and begged for help and all I hear is that it's the M.S. I just hope that someday somehow I will get some help before someone gives up on me.

  5. Having debilitating and painful MS symptoms is an absolute living nightmare for any human being, but if you are also unfortunate enough to live in the Glasgow area, well then you're doubly screwed! Having to rely on the abysmal 'specialist' MS Neurologists, in the Southern General (or whatever they're calling it now) Neurology Department is an experience I wouldn't wish on my worse enemy! They have almost driven my girlfriend to suicide with their cruel treatment (or lack thereof)! She now refuses to even attend a GP, and has gone without help or medicine for over a year and a half…I don't know how much more she can take, as she's in almost constant pain, bedbound and deteriorating every day. I really can't blame her for not trusting the medical profession anymore though, from my own personal experience of attending every appointment with her for years, and witnessing it all first hand, and from talking to other sufferers in waiting rooms, support groups, etc. it seems that the majority of them are nasty, arrogant, unhelpful, out of touch rich kids, who act as if talking to & treating you is a major irritating inconvenience for them! They seem to enjoy making their patients feel like half-witted, unimportant scumbags who are only after disability money! The MS Nurses, on the other hand, are beyond excellent…if only they were the Consultants! Are there ANY decent doctors out there (especially in the Glasgow area) who actually give a damn about terribly sick, depressed and despairing people? If so, please let me know…I wont go holding my breath though!

  6. I still am not sure if heat or its just over exhaustion-I have lately in past yr have trouble speaking & getting words out after a hard strenuous [email protected] or home&over heated of course-people think I am drunk&also have worse issues w/walking too-like I'm drunk-these issues have been fairly new & cause me to bump into things/walls/doors cause vision seems impared as well-its actually pretty scary @ times

  7. I have all the symptoms but my neurologist dismisses MS My daughter My grandaughter and I were diagnosed with Ehlers Danlos but you can tell when I am fatigued I look awful I was losing my balance staggering and falling but my physical rehabilitation really helped me so does yoga. Ehlers in some ways is very simalir to Fibro Malagia which was my first diagnosis my neurologist thinks my symptoms are from pain medications, I got so mad at him. But with the yoga helps with pain balance

  8. It was a nuerologist that said that to me. I know there are MS patients that are in worse shape than I am. I was shocked and have thought about this over and over. I agree that I need to find another doctor. This is the same doctor that 6 months ago told me that I need to be in my wheelchair more and now he says I am in it to much. I tried to tell him I am only in it when I have a long distance to walk and do not use it in the house. He would not listen. He acted very strange.

  9. I'm sorry your doctor would treat you so disrespectfully! I'm also curious if this is an MS Specialist or just a neurologist? I went through similar situations for 2 years until I found a wonderful MS Specialist that never takes what I say lightly. He treats me with as much respect as any other patient. I think it's time for you to find a new doctor. He doesn't seem to have your best interests in mind!

  10. has anyone had a doctor (Neurologist) say to you. In a 64 woman with MS you should not be having the problems you say you have? This happened to me last week. I was shocked that he would talk to me that way. He went on to say yes you have MS, but your MRI does not show any change, now if you want to see MS I can show you MS. I think you need more physical therapy and less stress. I have temores in my hands and legs as well as tingling and pain. I was diagnosed 4 years ago at age 60.

  11. I was wrongly diagnosed for 5 years by a bad Neurologist who was convinced I had Lupus. 5 years lost until I found a great doctor who taught me more in 5 minutes than Dr. Jackass in 5 years!

  12. 500 lb. weights on my legs and slogging through mud nails it! Lifting a glass of water hurts is one that helps.

  13. I am here championing your awesome mission of educating others about this most uncomfortable disease! A big fan — Tera

  14. I FEEL YOUR FRUSTRATION AND PAIN AS I AM TOLD OH YOU JUST NEED TO GET UP AND DO MORE MOVE MORE WALK MORE ETC AND I GET SO FRUSTRATED I HAVEN'T BEEN DIAGNOSED YET WITH MS WAS TOLD I HAVE NEUROPATHY BUT NO EMG WAS DONE IT WAS DX JUST BY SYMPTOMS BUT FROM WHAT I SEE I HAVE MANY SYMPT OF MS I PRAY I DON'T HAVE IT

  15. ALSO MY FEET AND HANDS STAY COLD AND I CAN'T TOLERATE HEAT WHEN I TAKE A BATH MY VEINS COME UP VERY PRONOUNCED AND IT HURTS FEELS VERY TIGHT IN MY FEET BAD I AM ALSO HAVING BOWEL PROBLEMS EITHER CAN'T GO OR HAVE DIARREAH I'M THINKING I NEED TO BE CHECKED FOR MS NEED A MRI OF SPINE AND BRAIN I AM BEDRIDDEN WITH PAIN AND BALANCE IS OFF AND I SOMETIMES WOULD SWEAT REAL BAD IN COLD ROOMS MANY STRANGE PROBLEMS EVEN MY SKIN WOULD FEEL SORE YES ACTUAL SKIN WAS SORE IT COMES AND GOES I NEED HELP I'M SAD

  16. I FOUND THIS BY ACCIDENT AS I WAS DOING A SEARCH ONLINE AS I HAVE BEEN SUFFERING FOR ALMOST A YEAR NOW WITH DIFFERENT SYMPTOMS AND THEY ARE GETTING WORSE IT STARTED OUT WITH TINGLING NUMBNESS IN FINGERS AND TOES THEN SPREAD UP INTO HANDS AND FEET THEN PAIN AND SPINE PAIN AND BURNING PAIN IN SPINE SHOOTING UP INTO MY HEAD EVEN BURNING SENSATION IN MY HEAD BALANCE OFF TRIPPED TWICE AND HIT THE FLOOR ALSO VISION PROBLEMS STARTED SHORTLY AFTER OUT OF NO WHERE I WAS TOLD I HAVE NEUROPATHY WITHOUT TST

  17. Thank you first to the MS Society and the consistent diligence that you display! The video's with Dr. Kalb is the most accurate, understanding descriptions of invisible symptoms of MS. I highly encourage to share the excellent video's provided.
    Every day is a new day so live life at your fullest 😉

  18. Thank you Dr. Kalb for this excellent video outlining some key elements of this disease process. I am a first year medical student at UMHS.

  19. I am/was a fully active NURSE and I still can't most doctors to believe me!!!! I've been 80% disabled for 6 years! AAAAAAAAAAAGHHHHHHHHHHHHH

  20. I watched part 1 and 2 and it is accurate and helpful. As somebody who has MS I will say that what is most frustrating for mess the lack of understanding by others. Even my close family doesn't understand my pain and other symptoms.

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