Mandy,
You bring up some very good points in you post. However, my main complaint with his interview was not his display of emotions. I felt his whole segment was insecere, disingenuous and hollow. He was there to promote a book, not to "be the face" of MS. If he wants to be one of the faces of MS, then correct the aggredious misinformation Dr. Oz spouted during the segment. I was so angered by the entire segment, I'm sure my blood pressure was elevated. And I'm a calm person, normally.
I admire Montel for speaking up about his depression and suicidal thoughts and attempts, but if you are going to talk about a disease you have in as public a forum as Oprah, please have the facts straight, and insist that only factual information is presented.
I'm sorry if I seem to be ranting, but I feel very strongly about this subject. Thanks for your input!
Peace,
Kelley
http://kelleysmsblog.blogspot.com/
Yes -- Dr. Oz has some explaining to do. Don't worry about ranting here because that's what we're here for. Every viewpoint matters.
I agree about the factual errors, but I personally am not comfortable with questioning another MS patient's motives. Thank you for weighing in, Kelley.
* Note to Oprah and Montel -- you just might have a ready-made panel of MS patients and family members right here if you want one... throw in an MS specialist and you'll have an informative and interesting show! *
Thanks for a very rational piece. You are so right, my MS is always going to be my MS not anyone elses, just like with life itself, no one is the same as anyone else.
I did not see the show, but I admire Montel for going on TV and talking about MS, so many people don't.
Your article was great, thank you.
Thank you for your column and for discussing so many important issues. I did not see the Oprah show, however I have met Montel several times during the time I volunteered to help raise funds for his new Research Foundation, to which he continues to give of his precious time, energy and resources. I don't believe anyone should say that Montel is not genuine in his response to his own MS or his commitment to helping others who are also facing the realities of this disease—realities that you so correctly point out are individual to each of us.
I was invited to be in the audience for one of Montel's shows on MS, in which he interviewed 3 people with the disease. He interviewed a young girl who had been living with MS already for several years and who had physical challenges as a result;a woman who had infrequent, but serious, exacerbations; and a male attorney, who suffered such cognitive loss that he could not recognize his wife of many years one evening as they were sitting on their couch. He had to stop working when he was in court and for a few minutes could not recall why he was there, who his client was, or what the judge expected him to do. Montel does have "real" people on his shows, people who have real symptoms, real emotions, and life changing realities due to their MS.
Montel has put up a strong fight against his MS, which had to be difficult to do in the public eye. In his book, "Climbing Higher," Montel talks about his journey to acceptance and the impact the MS has had on his career. One aspect of his disease that Montel speaks about, and which does not get much coverage from others who speak out publicly about MS is the pain he lives with as a result of his illness. We often hear that MS is not a painful disease, and statistically this may be true, but to those who live with chronic pain from MS can find it difficult to live with than any of the other symptoms.
I have heard many people talk about how different it is for Montel because he can afford all the doctors, therapists, nutritionists, and other personnel and items that can make his life a little easier and allow him to pursue non-traditional forms of therapy. That may be true, but we should not forget that he is also a man fighting for the same freedom from the physical and emotional limitations that this disease imposes on many of us. Having more financial resources doesn't make it easier to feel weakness overtake our body, in fact if I had been so in tune with my body for as long as Montel has been I expect that the weakening of my muscles and limited mobility would have been more difficult for me than it was. I can adapt to a wheelchair or motorized scooter and not have producers and directors, or audiences, questioning my motivations.
On the other hand, having to give up the career I fought so long to have was devastating to me; the energy drain and the almost daily seizures took that away from me and I haven't found a way to fill that void. Montel has been able to continue his public life, although he has made adjustments I am sure, and if he can no longer do his daily TV show I hope he has options that will allow him to continue to use his creative abilities, and continue his fight against MS on behalf of all of us.
I realize I am writing a long comment, and I apologize, however I wanted to add these few points to your wonderful Post about a man who may not do or say everything the way we want him to, but who has made a significant commitment to raising research dollars that we all can benefit from. Go to montelms.org to learn more about what the Foundation is doing, and I can tell you that there are activities all over the country that Montel participates in when possible. The Foundation has a small and dedicated staff that has raised millions of dollars, 100% of which has been dedicated to research funding, making a significant difference in critical MS research at several institutions.
While I am sorry that there were some inaccuracies given on the show, and I am glad you are working to clarify or correct them, I am pleased that Montel appeared on the Oprah show and discussed how MS has affected him personally and professionally. Not enough people know about Multiple Sclerosis, its symptoms, its impact on peoples' lives, or the lack of effective treatments and cure, so for someone as well-known and well-respected as Montel to come forward, in what sounds like was a touching and honest way, can be very helpful to enhancing awareness, which we can all benefit from.
Thank you again for bringing this topic to us for discussion. I only hope more people, both celebrities and regular people alike, have opportunities to speak out about MS and the impact it has had on their lives.
Denise,
I had no idea that you helped to raise funds for Montel's research foundation and that you had the opportunity to meet with him. Your comment provides us with some insight we may not have had otherwise.
So you're not a celebrity, but you and Montel have shared similar experiences. You're so right -- having good insurance and money make life with MS less stressful, but all the money in the world will not remove MS from your body. Money or not, he must live with whatever MS dishes out -- just like the rest of us.
I get that he needs to sell his books but, as you point out, he has raised millions of dollars for MS research, so I'm inclined to think we can cut him some slack.
As for Dr. Oz, he wasn't the topic of my post, but I sincerely hope that Oprah does a follow up show to clarify his strange statements.
Thanks, Denise, for providing us with that information.
In addition to raising money for MS, I know that Montel has given personally as well. I also think that books such as his, and Richard Cohen's "Blindsided" also help to bring awareness to the disease and the lack of knowledge about the causes and cures, as well as the need for improved treatments. While there may be differences with some things that Montel said about MS, I do think that in general he does a good job of both enhancing awareness about and raising funds for this devastating disease.
I don't know what Dr. Oz said on the Oprah show, but based on Lori's comments he said some pretty strange things that should not be let stand unquestioned.
Anyone who saw the show and objects to what was said should write to The Oprah Show and tell them that they have a responsibility to everyone with MS to provide accurate and complete information. You can leave comments on the show's website or get the address in case you want to write a letter. The website will also give you phone numbers if you'd rather call.
I don't watch the show myself, but I believe she is pretty responsible about providing clarifying information. But even if she doesn't, those who have a problem should speak up anyway. We are our own best advocates.
Now I really have to get a copy of the show to watch.
Hi
My husband and I heard about Montel Williams free medicine ad an went on the website to apply we even gave a credit card. It turns out that free medicine has been taking peoples money ..does Montel know this. According to the BBB many people have been taken. My husband has been without medicine for almost a year now.
I am a newly diagnosed RRMS with residual deficits who told her 84 year old grandmother about her diagnosis the week before Montel's appearance on Oprah.
My grandmother watched that show and now she thinks that I am lying to her about the severity of my disease, and she also thinks that she can't hug me anymore because hugs can asphixiate me.
Thanks Dr. Oz for helping alienate me from my grandmother. Your crazy comments have set me back in my getting my family to accept the realities and disprove the misconceptions of my disease.
Yer a peach.
Oh, your poor grandmother!
I hope you can convince her that hugs won't hurt you.
Show her this: it's the National MS Society's response to Dr. Oz's "chest hug" comments.
http://www.nationalmssociety.org/news/news-detail/index.aspx?nid=1158
Hi Mandy,
Thanks for writing this piece which does make some excellent points regarding how MS is so unique to the individual. The 20 minute video of the show can be viewed here. My personal response to the show would focus on the inaccuracies of facts and data.
Thanks, Lisa. There are two separate issues here.
First there are the facts of MS and, hopefully, the public reaction will warrant a follow-up. As you pointed out to me earlier, the National Multiple Sclerosis Society has already tried to clear up some inaccuracies.
Secondly, there is an emotional response to the point-of-view of one person with MS. I would hope that no one is judging us so harshly, but you never know.
Note: Lisa's latest MS Blog Carnival addresses this same topic.
Mandy,
You've received some excellent response to your piece 
which seems to have given permission for others with MS to voice their own opinions and thoughts. I refrained from adding my own reaction to the Carnival of MS Bloggers and attempted to present the varying opinions discussed in the blogosphere.
Personally, I do deal with depression, either in addition to or, as a presenting symptom of multiple sclerosis. It truly can make things more difficult and is certainly no fun.
I just viewed about 20 minutes of the interview of Montel on the Oprah show. I can truly TRULY identify with his emotions and everything he was saying. I have been there! Depression is not pretty and can hit you at any given moment. His raw emotion brought everything right back to me.
It has been about a year and a half since I was at my lowest point and I have to keep my depression in check to make sure I don't slide down that slippery slope. And for anyone to judge Montel, or anyone else for that matter, you should be ashamed of yourself as it is obvious that you cannot identify. I suggest reserving your opinion.
Everyone is entitled to their opinions, however after reading some of the judgemental comments, I am sincerely disappointed.
Thank you so much for taking the time to comment on such an emotional matter.
Depression is one of those things that people tend to judge, even if they have little understanding of its true nature. I have a feeling it comes from an "I would never act like that" point of view. Never say never...
I do not suffer from depression. For whatever reason I am feeling extremely upbeat these days. I'm in a great place, but it hasn't always been so. Many years ago, way before MS reared its ugly head, I had a lengthy bout of depression, initially brought on by years of chronic migraines. I'll second your statement -- it wasn't pretty.
I don't think it was my fault that I had depression and I don't think I can take much credit now for NOT having depression, so I wouldn't presume to judge someone else.
So glad you chimed in!
I have been reading yours and others reactions to Montels spot on Oprah. I guess I am one od the few people it actually helped, so I appologise to the others. I have MS and Lupus. (extrmely rare but possible). I first got sick over 16 years ago. Got my lupus Dx first. Read everything I culd find on lupus and often wondered if some of my symptoms were from all the reading manifesting itself.
Consequently when I got the MS dx finally I decided not to educate myself on the symproms but rather the causes and possible alternative treatments. Because I didn't educate myself on all the symptoms when I started experiencing the "MS hug" I just wrote it of as horrible intermittent spasms. However one night as I got into bed my diaphragm and accessory breathing muscles (located in the back, I have asthma so know how they feel) suddenly locked up. I thought, worst panic attack in he world. could not get any air in. I was barely gasping. It was not an asthma attack. After hearing montel it seems like I had my first severe MS hug. It was extremely frightening. I thought it would not end. I thought I was going to die, right there. Please don't write off the possibility of the muscles spasming all the way arround. I know it happened. My husband was able to shove a Klonopin in my mouth ( I sometimes let them disolve in my mouth, DR says it is ok, quicker deliverance) and he trued to clm me as best he could. Obviously it subsided finally, at least at the diaphragm or I wouldn't be typing this.
I am a little angry at some of the responses Montel has gotten. Yours was kind and well thought out. As, bare with me I think you said, my MS is not your MS: we are all different. I wholeheartedly agree! Thank you very much for saying that. And the crying, well I experience uncontrollable bouts of tears quite often for the silliest thing. It happens folks, really it does. I also experience uncontrollable bouts of laughter, lol, these can be quite painful!
His comment about wishing he could go one day without medication was a valid comment. Maybe not so much for MS but if you think about it there are those of us that need our anti spasm medications everyday, don't take them end up like a pretzel, or feeling like one. I understand his comment better because I also have severe asthma. Yes I could probably walk away from my vitamins and supplemants and otr MS and Lupus meds for a couple days, however I would die if I walked away from my asthma medications.
Please folks while being so critical about montel realise he is suffering just as we are. Don't get angry because he has money to make it better. As my husband says "there is always someone worse" and as I say, we are entitled to feel bad and sad whether or not there is someone worse. We are entitled to be scared sometimes and foremost we are entitled to understanding, but we are not entitled to let our pain and suffering to become bitterness to others thereby causing them pain and suffering. That causes a cruel circle.
B.
Your comments once again point to the fact that each person with MS has a unique set of circumstances regarding symptoms, treatments, emotional reactions -- and other medical problems adding fuel to the fire.
Thanking you for talking about your symptoms and how they have affected your life. It helps to put things in perspective and benefits other MS patients.
Thanks again for taking the time to enlighten.
I wrote a response a few weeks ago on Oprah's message board about this show. I could not believe the vitriolic comments posted there regarding Montel's outpouring of emotion and the depiction of his pain, daily regimen, etc. There was inaccurate information regarding the facts of MS presented (which was frustrating), but for every message pointing that out there were two or three attacking him personally. I don't think the producers claimed it was a show on MS per se. I believe it was presented as a show regarding how one might cope after a devastating diagnosis. Montel's story is subjective, and certainly his to tell. Each of us who battle this disease does so in different ways. I so appreciate this site which allows us to respectfully respond to one another, appreciating the fact that my MS is not your MS or Montel Williams MS for that matter. Mandy, thank you for your wonderful posts.
Hi, Patricia:
I think it's great that we've brought this out into the open for honest debate. Apparently, I'm not the only one who was shocked at the personal attacks. It's not easy to put yourself out there emotionally for all the world to see, and it's just too easy to find fault with those who do.
Thank you for your compassionate words.
I too have MS, although less severe than Montel. I have had it for 30 years. It is a very frustrating disease. I was surprised at Montel talking about burning pain in his legs and feet. I too have that. Mostly in my feet. I carry on with life mostly by doing swimming aerobics at the gym 3 days a week and the other 2 walking on a treadmill and doing the circuit in weightlifting machines. I take a nap every day! The evening would be non-existant if I didn't. My MS affects me mostly in my energy. If I don't exercise I get so stiff that I can't move. I do take Baclofen to help with my stiffness and also vitamins. One just has to keep moving or you would wind up stiff and in a wheelchair.
The pain in the feet thing also caught my attention. I'm not there yet, but I have a constant throbbing/aching sensation in my feet. Just as Montel said about his pain, there are times when I'm focused on something and I forget about it, but as soon as I switch gears, there it is again.
MS is not a pain free disease for a lot of us, so thank you for talking about it.
I just want to say that my mom abd sisters live in CO. they have not seen me since I was told I have this MOSTER. There are days when they would call and just could not talk to them because of the pain in my legs to my feet I can bearley get out of bed yes I take pain meds but I try not to take them to much because I don't want to be depended on them. I told my family to watch Oprah that day to get a better understanding because me and my husband watch it frist. That night my family called to tell me they love me and know they understand more. One sister and brother in law own a biseness ther is a person that comes in and they ask if he watch it he said he did and that it could not have been decribe so well. Just had to put my in put in.
Thanks
Wow...Great Post. I wonder how (rare) the symptom of emotional liability really is. I also can cry at the littlest things more than I ever have in my life. And the MS hug in your chest is really a scary thing. I live with this symptom on a daily basis for the last 2 years. Sometimes it is pain/discomfort level 1, sometimes it is pain/discomfort level 8. One night it was a 10 but it doesn't ever seem to go away. And the misinformation Dr. Oz stated gave me a little scare at first. I was thinking my lung muscles would stop working and I would suffocate one day because I have been dealing with the MS hug in my chest for so long. I'm not sure what people expected from Montel in his interview with Oprah but it is his story and watching it does help some people who don't know anything about MS see how real it is for us even when you can't see what we are going thru because of our invisible symptoms. I think I said that right :)
Personally, I think it was the doc's place to provide factual medical information.
If I were in a public forum speaking about MS, and a doctor was included in the discussion, I would expect him to correct factual errors and provide useful information.
I've not experienced the chest hug thing, but I would imagine it is very frightening -- especially the frst time, when you are unsure what is happening.
Thank you for your input.
SORRY IF MY ALL CAPS BOTHER PEOPLE BUT I AM JUST SO TIRED OF TRYING TO SPEND MORE TIME CORRECTING MY TYPING THAN TYPING.AND I STILL HAVE TO CORRECT WORDS EVEN THIS WAY.AND I MADE STRAIGHT 'A'S IN TYPING WHEN I WAS IN SCHOOL.I WISH I WOULD HAVE SEEN THE MONTEL EPISODE ON OPRAH.THERE SEEMS TO BE A LOT OF NEGATIVENESS BY THE COMMENTS I READ.I DO NOT KNOW YET WHETHER I HAVE MS OR NOT.BUT I DO HAVE AN ARRAY OF OTHER CHRONIC PAIN ISSUES AND DEPRESSION AND SUICIDAL FEELINGS I FIGHT EVERY DAY OF MY LIFE.AND I THINK IT IS NOT CONSTRUCTIVE WHEN WE FEW THAT ARE IN THIS TOGETHER START CUTTING EACH OTHER TO PIECES.WHAT DOES THAT ACCOMPLISH.IT IS HARD ENOUGH TO GET OUR FEW FRIENDS AND DOCTORS TO BELIEVE US.
I KNOW RIGHT NOW I COULD NOT STAND TO HAVE SOMEONE EVEN SEE ME HOW I LOOK RIGHT NOW.IMAGINE SOMEONE THAT HAS BEEN A TV PERSONALITY AND MADE HIS LIVING THAT WAY.IMAGINE HOW IT MUST MAKE HIM FEEL.WE CAN REMAIN IN THE BACKGROUND.SAFE UNDER OUR COVERS IF WE WANT TO.BUT EVERY PLACE MONTEL GOES HE WILL BE RECOGNIZED AND YOU KNOW THAT HAS TO PUT EVEN MORE STRESS ON HIM .AS COMPARED TO US.
I JUST WISH EVERYBODY WOULD BE KINDER TO EACH OTHER. AND TO US AS A MEDICAL COMMUNITY SHOULD.THEY TEND TO SHRUFF US OFF.MAKE OUT THAT WE ARE JUST LOOKING FOR DRUGS.IT SEEMS LIKE IF THEY CANNOT COME UP WITH A DIAGNIOSIS IN THE FIRST 30 MINUTES OF KNOWING US THEY EITHER SHOW FRUSTRATION.OR TRY TO BLAME IT ON A BAD LIFE STYLE.THEIR CONSCIENCE IS CLEARED I AM SURE WHEN THEY GO HOME AT NIGHT TO THEIR BIG MANSIONS AND POOLS WHILE WE PONDER HOW WE ARE GOING TO PAY FOR FOOD,MEDICINE,AND ALL THOSE OTHER THINGS BECAUSE WE ARE NO LONGER ABLE TO WORK.AND TO THOSE LIKE MYSELF LUCKY ENOUGH TO HAVE A HUSBAND WHO WORKS AND DOES THE HOUSE AND THE GROCERY AND EVERYTHING.IF IT WAS NOT FOR HIM I AM SURE I WOULD HAVE TAKEN A BOTTLE OF MEDS YEARS AGO.I AM JUST IN SO MUCH PAIN.AND THIS IS FOR 11 YEARS.HOW MANY MORE YEARS CAN I CONTINUE LIKE THIS.
I DONT KNOW.... BUT BEING NEGATIVE AND BASHING OTHERS IS NOT THE WAY.GOD IS IN MY LIFE.AND I DO NOT MIND IF THAT OFFENDS OTHERS.TAKE IT OR LEAVE IT.I DO BELIEVE IN A SUPERIOR BEING CALL HIM WHAT YOU WISH.I THINK THERE HAS TO BE SOME KIND OF PLAN.WHY DO SO MANY PEOPLE DIE IN SUCH AGONIZING WAYS BACK TO AIDS.AND CANCER.THESE THINGS ARE STILL GOING ON AND THERE IS NO CURE FOR THEM EITHER.
ALSO IN TRYING TO GET A DIAGNOSIS I AM CONTINUALLY BEING RESCHEDULED AND PUT INTO FURTHER FEAR BECAUSE I WAS REALLY LOOKING FORWARD TO MY 40TH REUNION I HAVE BEEN WORKING ON FOR 2 YEARS.I THOUGHT SURELY I WOULD BE ABLE TO GO BY NOW.NOW I HAVE MY DOUBTS AND IT IS REALLY KILLING ME.I HOPE AND PRAY FOR EVERYONE IN PAIN THAT THEY HAVE RELIEF.THAT THEY FIND THAT THING THAT MAKES IT BETTER FOR THEM.GOD BLESS EACH AND EVERYONE OF US.JO
I too the special on Oprah with Montel & MS. Yes he is a celebraity and probably has access to meds and thereapies that we do not but MS is MS. It causes havco no matter who it attacks. It has to respect of person. Maybe we think justic was not done is representing those of us who are just plain Janes & Johns and Dr. Oz is not really that learnerned in the art of MS but he is a TV dotor so what do we expect. His office is probably in the hills of Hollywood. I am not mad at him! We are the MS experts, MS is MS, it slows walks us all down evidenually so it is what it is. Let's not be mad at Montel, let us just move on we have bigger fish to fry!
Jo,
Sorry to hear that you have so much on your plate. Sounds like you're in that ghastly state of the unknown about your diagnosis... and that you've run up against a health care system run amok. Still, you manage to look for the good in people and reach for the positive. We can all learn a lesson here.
I know it's difficult for you to type, so we truly appreciate the time and trouble you took to share your story. I'm sure you have touched a lot of people today.
I COMPLETLY understand how Montel Williams feels. I have bouts of depression and have to take medication for it. I started seeing a Multiple Sclerosis specialist at Shands in Jacksonville Florida. His name is Daniel Kantor. He changed the way my symptoms are totally. The first neuroligist I started seeing took over a year and a half to diagnose me. My new doctor was appauled that it took him so long. You could clearly see by my first MRI that I had it. The first doc also pumped me full of steroids for the pain. Which of course makes you gain a ton of weight. The new doc took away alot of my medication and started me on Betaseron. That in itself is a wonder drug for me. He also gave a compound to take for the fatigue and burning sensation. For Montel to go on Oprah and poor his heart out like and get negative feed back is wrong. Anybody that suffers thru that understands and likes to know that someone feels the way they do and isn't afraid to talk about it. I didn't see the interview but I am in AWE that Oprah didn't have a specialist on. I agree she needs another interview with a specialist.
Dr. Kantor is a frequent contributor to this site and has provided us with important information and insight into MS. I think you're in good hands.
Dr. Kantor you could teach Dr. Oz a few things about MS, kinda give him a short lesson before he gets on TV and does the blopper thing again, gotta love him for trying though. But like my grandpa use to say, and I am sure a lot of your older and wiser relatives have said also. "No one really knows just how dumb you are until you open your mouth." Sometimes it just pays to sit there and look cute like I do in my wheelchair and high heel shoes. Nobody knows, that I will fall flat on my face unless I try to prove that I can walk in them
Have a great weekend all, do not eat too many eggs could be a problem!
Thank you for this article.
I just recently started having chronic pain all over and this explains why. I saw my neuologist yesterday and she told me it was ms also. I sure wish I had know this earlier because I thought I was having a stroke or going paralized etc. I know this willl help others and thank you again,
Brenda
Our whole purpose at Multiple Sclerosis Central is to share information and help each other get through the mysteries and manifestations of MS. That you found some information here and got answers from your neurologist means that we're doing what we set out to do.
Thank you for commenting. This truly is an interactive community of many voices and faces of MS.
I was diagnosed June 2008 with MS. After many years of doctors trying to FIGURE out what was wrong with me. All looking at what was causing my headaches and migraines. Not doing the right test. (this is since I was 8 years old, I am now 47) In August 2007, I even went to UCLA medical center where a doctor proceeded to tell me he was 100% sure it was not MS! 10 months later, my family doctor begs another Neurologist here in Nevada to see me and he does all the test again, with the added T3 MRI and he proceeds to tell me he is 100% sure it is MS. I am on a daily injection and I will tell you it is Copaxone . As far as I know, it is the only daily injectable for MS.? I wish I would have watched Oprah that day. I have boy coted her show for her support of someone who will remained unmentioned. And I also am not a fan of Montel, I will explain why. When my current doctor told me I had MS, I reached out to Mr Williams. I emailed any address I could find, I wrote him letters. And you know what I got in return? A email from someone in his office saying, Mr Williams is a busy man and cannot answer everyones request! All I wanted was someone to talk with me, to help me understand! Someone who knew what I was about to go through! Someone who may know what I could expect. But no, he didn't have the time to help anyone else. I think the one person that commented here is right. He was too busy feeling sorry for himself to help anyone else! I am not crawling up and letting MS take charge of my life. MY husband gives me my COPAXONE every singe day! He is there for me EVERY DAY! He knows I am afraid of what lies ahead for us, but he tells me often, I will be right here by your side, I am not going any where. So, I actually said to him, if I end up in a wheel chair, are you going to push me? His reply: God Bless him:"if the day does come that you are in a wheel chair, I will gladly buy you a power chair!!" How cute is my husband!! I think Montel & Oprah should have had a little pow wow before doing this show. From the sound of things, neither one of them were prepared for the show!
Well, thank you for listening. By the way, if there is anyone out there that can chat with me about MS, things I can do, not do and expect. Please try to contact me! Thank you! God Bless you all!
Sherry,
I also was told by a neurologist, "you do NOT have MS." I don't think we are unique in that, either.
As far as what to expect -- wow, that's pretty complicated. No one can tell you exactly what to expect because the list of symptoms is so long and variable.
That being said, Multiple Sclerosis Central exisits so that we patients can reach out to one another, share our experiences, and offer support. It sounds like you need some of that support. But not all MS patients have it to give. Some have yet to make their own peace with MS, some have too many health issues, and some have an abundance of emotional issues.
You are welcome to email me directly at writer@webcampone. I'm not a medical professional and won't offer medical adivce, but if I can offer you the benefit of my personal experiences, I will do all I can to help.
I may not be available to answer immediately... but I will answer.
Hello, yes I whatched the Oprah show that had Montel Williams on it, I was rather taken back wiht his honesty, NOW about the uncontroable Crying, I took part in a study along with many others, in regards to crying, laughing, and there were a couple of other things on the list. And yes I am one of them out of the blue I will just for now reason start crying, or I will start laughing and just have the hardest time stopping. Now I have been DX now sense 09/05/1986, and I am a nurse also. I do not take any of the drugs that I am sure many are taking now, because I am too drug sensitive to take them. My body has fits and just goes into "now what is she doing?" type of questioning what is going on. And then I end up having to go and get some Steroids to slow it down. And so I have had to put the negative on Drugs or any of the special stuff they want to come up with. I stick with Vitamins and have been that way now for sometime. Why question Oprah, she has no idea what most of us go through, nor does Dr. Oze and he is a fine Dr.. I am just happy Montel came on and talked to everyone. Thanks for listening, Jeanne M Johnson
Dr. Oz is a Heart Surgeon, so I always take everything he says with a grain of salt (he can't know everything about everything). And Oprah admitted that she knew very little about MS. I am just glad that she did the show to show the rest of the world a little glimpse of what it is like to have MS. Yes, Montel's MS is not the same as my MS, but many of his emotions are the same. "For just one day, I would like to forget I have this disease." I appreciate Montel opening up about his struggles!
I did watch the show while I was cooking dinner for my husband and his parents, and feel the same way about Dr. Oz. I listen and if it sounds like it pertains to me, then I go research what he said. It was good in the fact that my family saw it, all the emotion and listening about his symptoms. What I didn't like was how he kept pushing the exercise thing, it's hard enough to just get up and walk a few steps, I've tried to push myself to exercise but I just can't. Anyway I agree with what you said.
I wish the world was a just place.I wish people had compassion for everyone.I wish there was no disease or pain in this life.I wish that I do not wake up each morning wanting to committ suicide and get through that hour to hour.I wish my close friends and children could understand how much their comments hurt me.I wish I knew what it is that I do that hurts them.I have so many wishes in me.Enough for several life times.I think we all do.But I do know that no matter how hard I wish for these things.They are not going to happen.But I can continue to wish that the world was a better place to live in.
Hi Anonymous,
I'm very concerned by the way this posting reflects your mood. Let's get in contact. Please email me and I'll explain. I'm not one of the experts on this site but I'm pretty sure I've seen you posting on other sites I am involved with (maybe the depression or bipolar sites)? My email link is on these sites.
Dr. Jerry Kennard
FIRST LET ME THANK-YOU FOR TAKING AN INTEREST IN WHAT I WROTE.I HAVE BEEN BATTLING MANY LIFE ALTERING DISEASES.I HAVE LOST WHAT I CALL 'SELF'.I HAVE MADE MY HUSBAND OLD BEFORE HIS TIME TAKING CARE OF ME.AND ALTHOUGH I WAS A VERY GOOD MOTHER.SACRIFICING MY LIFE FOR THE SAFETY OF MY 3 DAUGHTERS.THEY CANNOT EVEN BE IN THE SAME ROOM WITH EACH OTHER SO THAT I CAN SEE ALL MY GRANDCHILDREN AT ONE TIME.
IT SEEMS TO ME WHEN MY GRANDPARENTS WERE ALIVE.WITH 5 CHILDREN AND 12 GRAND CHILDREN AND 22 GREAT GRANDCHILDREN.WE ALL WENT TO THEIR HOUSE.AND YOU CAN BETTER BELIEVE THAT IF YOU HAD A PROBLEM WITH A COUSIN OR AUNT WHOEVER.YOU KEPT IT TO YOURSELF.
IS IT TOO MUCH TO ASK KIDS IN THE LATE 30'S ONE IS 40.TO HAVE ONE OR 2 HOLIDAYS OUT OF THE WHOLE YEAR WHERE ME AND MY HUSBAND CAN SEE ALL OF OUR GRANDCHILDREN AT THE SAME TIME.I HAVE 3 BY-RACIAL GRANDCHILDREN.THEIR AGES ARE A BOY 10 A GIRL 6 AND ANOTHER BOY 5 MONTHS OLD.HERE IS THE PROBLEM WITH THEIR MOTHER
ALTHOUGH SHE WAS THE ONLY CHILD I HAD WHO SUPPORTED ME ABOUT HAVING TO TAKE OPIOIDS IN ORDER TO JUST EXIST.SHE NEVER JUDGED ME.SHE ALWAYS BROUGHT THE CHILDREN OVER WHEN EVER I ASKED HER TO.AND IF THEY GOT ON MY NURVES SHE WOULD TAKE THEM HOME.NO PROBLEMS.I FELT SAFE WITH HER.
UNTIL I FIND OUT SHE HAS STOLEN MY IDENTITY AND I WAS FORCED TO EITHER PUT MY OWN CHILD IN JAIL.OR GO TO JAIL MYSELF FOR SOMETHING I DID NOT DO.I DID NOT RAISE MY DAUGHTERS TO STEAL OR CHEAT.BUT THIS IS MY YOUNGEST AND SHE HAS HAD PSYCHIATRIC PROBLEMS SINCE SHE WAS 14.I HAVE GIVEN OVER 100 THOUSAND DOLLARS THROUGH THE YEARS SO THAT SHE CAN PAY HER BILLS.SO THAT THE CHILDREN ARE NOT TAKEN FROM HER.SO THAT SHE WOULD NOT BE HOMELESS.BUT I JUST COULD NEVER TAKE LIVING WITH HER AGAIN.AFTER SHE GETS OUT OF JAIL.SHE GOT PREGNANT.SHE ALREADY DID NOT WORK.SO WHY SHOULD MY GRANDCHILDREN SUFFER FOR THE WRONG THINGS THEIR MOTHER DID.
I HAVE TRIED TO TALK TO THE OTHERS IN OUR FAMILY.FOR THE SAKE OF MY HUSBAND AND MYSELF.FOR THE SAKE OF COUSINS WHO LOVE EACH OTHER VERY MUCH.IS THAT TOO MUCH TO ASK?I DONT THINK SO.
YES I HAVE GONE THROUGH SUICIDAL FEELINGS.I FIGHT THEM EVERY DAY OF MY LIFE.WHEN I GET ONE MEDICAL PROBLEM UNDER CONTROL.ANOTHER ONE POPS UP.I HAD A DOCTOR'S APPOINTMENT YESTERDAY BECAUSE ALL THE ANTIBIOTICS HAVE EATEN MY STOMACH UP.SO THE RX'S FOR THE STAPH AND YEAST INFECTION IN MY MOUTH REDUCE ME TO A CURLED UP BALL.AND I TOLD THE DOCTOR THIS.COULDN'T HE DO IV ANTIBIOTICS TO BYPASS MY STOMACH.HE SIMPLY SAID EITHER TAKE THE PILLS OR DIE.
TODAY I HAVE AN APPOINTMENT ONCE AGAIN.I NEED TO GET AN MRI OF MY BRAIN BECAUSE MY PSYCHIATRIST THINKS I AM DISPLAYING SYMPTOMS OF MULTIPLE SCLEROSIS.BUT AS OF YESTERDAY.THERE ARE MANY THINGS I HAVE TO DO TO GET READY FOR THAT TEST.
2 YEARS AGO I STARTED PUTTING TOGETHER A HIGH SCHOOL CLASS REUNION.AND I FEEL LIKE I AM GOING TO BE TOO SICK TO GO.ALL OF THESE WELL WE CAN'T FIND YOUR CT/ABDO EVEN THOUGH WE CALLED TO MAKE SURE IT WAS THERE.HE STILL HAD TO RUN AROUND THE OFFICE BECAUSE HE HAD ABSOLUTELY NO IDEA WHERE IT WAS.
IT IS ALL THESE DELAYS AND RED TAPE THAT END UP BEING TOO LATE AND PEOPLE DIE.I AM NOT MEDICALLY ILLITERATE.I WORKED AT MAYO CLINIC 7 YEARS.I DO KNOW A THING OR 2.AND THAT IS WHERE I MET MY PSYCHIATRIST.I TRUST HIM.HE KNOWS ME WELL.AND I HAVE A PAIN MANG DOCTOR I HAVE BEEN GOING TO FOR 10 YEARS.THEY ARE AT THE TOP OF THEIR GAME.I FEEL VERY SSAFE WITH THEM.BUT MOST OF THE TIME IF I TELL A DOCTOR IF YOU DO THAT TO ME.IT IS NOT GOING TO DO WHAT YOU THINK.I HAVE BEEN THROUGH THIS DOZENS OF TIMES.ALL YOU DOCTORS ASSURE ME IT IS NOT.AND I END UP IN THE EMERGENCY ROOM.SORRY IF I NO LONGER HAVE FAITH IN DOCTORS WHO MERELY GO BY BLOOD WORK AND NOT COMMON SENSE.I THINK THE MEDICAL PROFESSION NEEDS A KICK IN THE PANTS.AND I AM PROUD TO SAY I DO BELONG TO THE AMERICAN PAIN FOUNDATION.
I HAVE ALWAYS HAD PITY AND COMPASSION FOR OTHERS WHO ARE IN PAIN BOTH PYSICAL AND MENTAL.I WOULD BE HAPPY TO SPEAK WITH YOU.JO
I did watch the show with Montel and Oprah. I have to agree that some statements were somewhat exaggerated, but I do applaud Montel's candor albeit emotional presentation. Based on my dissapointment with his first book that I thought glossed over reality and made a lot of MS patients feel less than adequate or guilty if they couldn't be 'on' all the time and feel as in control and good as Montel apparantly did.
I have suffered from the 'MS Hug' or chest hug that he described for over seven years. In my case it is constant pain which can be exacerbated by heat, stress or fatigue. That in fact was what originally led to my diagnosis, because my former husband was sure that I was having a heart attack the pain was so severe. I have tried several neurological pain meds including Neurontin none of which have been effective so I am not currently taking any meds for that.
It was surprising to me when I witnessed his very open display of emotion and the uncontrollable crying. I was however disappointed that it so easily explained only as depression. In my own experience, uncontrollable crying was a horrible reality that was very new to me. I was never a crier in my life and would cry at the drop of hat without being able to control it. I was so distressed and angry with myself. I finally discussed it with a counselor who explained that location of lesions in brain could indeed be the culprit and that I should speak to my Neurologist. She told me to stop beating myself up and thinking that I had simply turned into a whiney baby. She was right and fortunately, after a few years a lot of those symptoms did lesson significantly.
As much as I appreciate and am excited by the growing visibility for MS, it is exclusively being discussed by celebs who also happen to have MS. It may have taken people with that kind noteriety and exposure to lend MS patients a voice, but now it's our turn. I think MS patients can more easily relate to people more like themselves and with whom they are less likely to be suspect of their motives. If MS patients could listen to a forum of general population MS patients; persons to which they could more easily relate with dissimilar symptoms that could share what living with MS day to day is really like to them it could be very beneficial.
Thank you Mandy for your open mindedness in your discussion about the interview and not just being on the attack for those things that were not completely accurate. Seeing Montel's vulnerability may have been a good thing for a lot of people who hide their true feelings.
I also don't watch Oprah, but friends of mine did tell me about this show. I respect Montel for not hiding his life with MS. To be honest, the only thing I can say to his critics is that they should live one hour in his, your, my shoes and then criticize.
I'm also open and honest about my MS. It helps me deal with it. There's no reason to put on a show for anyone on earth and I'm happy that Montel let it all hang out.
Supportive hugs to all you guys and Montel, too,
Maris
Hugs all around then!
It think too many people presume to know someone else's pain, whether it be physical or emotional. Lord knows, I've encountered my share of those people. I tend to cut folks a little more slack than that.
I believe that Montel Williams has appeared in other forums, and came off very differently than he happened to that day on Oprah's show. Good days and bad days. We all have them.
Thank you so much for your insights.
I have not seen the Opra show that had Montel on talking about his MS. I was diagnosed with MS 4 years ago and i can relate to what he is going through the crying outbirst is something you can not control so for someone to criticize him for that is wrong. there are times i get angry at myself because i can not do the things i use to do like run, or take a walk around the block, so unless you have MS you should not put someone down for the things they do or feel, it can not be helped.
I did watch Montel on Oprah. To be honest, I had mixed emotions. First of all I am a big fanof Oprah. Love and respect her for all her knowledge. I was amazed!! She did not know what MS was!! So, I guess I shouldn't be amazed when I run into people on the street and ask me "what happened to your leg?". No, a simple answer of "I have a bad leg" does not suffice. They keep asking, (you think they would get the hint, none of thier business) no! So finally, I admit to having MS. Of course everyone knows somebody with MS. But, PLEASE do not tell me Aunt Sally has MS and has her good days and bad days then her symptoms clear and she is good for several months!! I am glad for her! Unfortunately, I am wearing a brace to walk like a drunk! If I had good days and bad days this would not be necessary!!
I am glad Montel gave his story. However, I believe the public still sees MS as painfull but able to work, depression but able to be hidden, and we are all looking to qualified as disable so we don't have to work.
I would appreciate Oprah more if the "average Joe" with MS could share thier story. You know, the one who can't walk, uses a wheel chair or assistive device. The one who can not afford "the shots" Montel can afford or meds for that matter, or even COBRA at the tune of $650 a month (Yes, this is for a SINGLE on the policy). Then have to wait 2 YEARS before medicare kicks in!! I realize SS does not want to foot the bill for short term disabilities. But MS does is not short term!! So why are irreversible diagnoses not allowed to recieve medicare once approved for disability?
Don't get me wrong, I feel for Montel. I just think America needs to see and understand better how the "average Joe" deals with ALL aspects of the disease (pain, depression, insurance issues, home health, disability, to many to list). Also to inform the public of the various types of MS. I was a RN in ICU. Till this day I will never forget. One of the nurses I have deep respect for, didn't know there was several different types of MS! I didn't know either!! In the hospital we usually see end stage MS. (NOT A PRETTY SITE) So you could imagine to my suprise after all my research to discover that there was several differnt types of MS, but I had Primar Progressive MS. The worst form!! I realized what my future has to hold. Talk about a reality check!!
Well I could go on and on. Various subjects regarding MS as a RN and personally. Including, being diagnosed or lack of, symptoms, family support, self pitty/depression, coping skills, pt, ot, assistive devices, INS issues, social security review tips (#1 tip!!DOCUMENTATION!) NMSS etc. Not all favorable!
Good Luck! and God Bless!! Everyone!! Weather your reading this for yourself, family, friend, co-worker or just to become more knowledgable.
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Mandy,
I want to thank you for this post! I didn't see the interview either, but my sister has MS and I know for a fact that depression is part of MS as it affects her all the time. I am with you, everybody experiences the disease differently and expresses themselves differently. I think it's awesome that Montel is real about his experience and that, despite the emotions he feels, he continues to battle and try to stay as strong as he can.
I would do a lot to carry my sister's burden for even one day, but it's not to be. So, I do my best to support her and encourage her.
I don't understand the cruelty and ignorance some people display.
Thanks for setting things straight.
Spinner
Your sister is fortunate to have you.
Obviously, clinical depression intensifies the MS experience. I'm grateful not to have that burden on my shoulders, but I fully understand that it could happen to me, too. Hopefully, I will not have others stand in judgement of me if it does.
Thank you for your comment.