Whenever I hear about a celebrity having to wait ages for a medical diagnosis, like Michael Douglas waiting months to be told he has a large tumor on his tongue, or Serena Williams having to insist she be evaluated for a potentially deadly blood clot, I wonder what hope there is for the rest of us. It’s definitely an uphill battle and one that we may lose if we don’t vote to preserve our healthcare. That’s what came to mind when I read this story that Selma Blair posted revealing her multiple sclerosis diagnosis. While she doesn’t get into all the details she writes that she’s been consulting doctors about her symptoms for years and wasn’t taken seriously until recently. She only got a diagnosis after she told her friend Elizabeth Berkeley about it, who told her to go see her brother, a doctor. Selma was modeling a cute quilted velvet jacket in the photo and she started off her story with the detail that she needs help getting dressed for her new Netflix show, Another Life, due to her condition. (Another Life is a 10 episode scifi show starring Katee Sackhoff. The description makes it sound interesting.)
The brilliant costumer #Allisaswanson not only designs the pieces #harperglass will wear on this new #Netflix show , but she carefully gets my legs in my pants, pulls my tops over my head, buttons my coats and offers her shoulder to steady myself. I have #multiplesclerosis . I am in an exacerbation. By the grace of the lord, and will power and the understanding producers at Netflix , I have a job. A wonderful job. I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken gps. But we are doing it . And I laugh and I don’t know exactly what I will do precisely but I will do my best. Since my diagnosis at ten thirty pm on The night of August 16, I have had love and support from my friends , especially @jaime_king @sarahmgellar @realfreddieprinze @tarasubkoff @noah.d.newman . My producers #noreenhalpern who assured me that everyone has something. #chrisregina #aaronmartin and every crew member… thank you. I am in the thick of it but I hope to give some hope to others. And even to myself. You can’t get help unless you ask. It can be overwhelming in the beginning. You want to sleep. You always want to sleep. So I don’t have answers. You see, I want to sleep. But I am a forthcoming person and I want my life to be full somehow. I want to play with my son again. I want to walk down the street and ride my horse. I have MS and I am ok. But if you see me , dropping crap all over the street, feel free to help me pick it up. It takes a whole day for me alone. Thank you and may we all know good days amongst the challenges. And the biggest thanks to @elizberkley who forced me to see her brother #drjasonberkley who gave me this diagnosis after finding lesions on that mri. I have had symptoms for years but was never taken seriously until I fell down in front of him trying to sort out what I thought was a pinched nerve. I have probably had this incurable disease for 15 years at least. And I am relieved to at least know.
I remember when Sopranos actress Jamie Lynn Sigler went public with her multiple sclerosis diagnosis. She said she had to think about every step she takes and that she would get exhausted doing simple things like walking up stairs or being on her feet for a while. Jack Osbourne has also talked about living with multiple sclerosis and how unpredictable it can be. And of course we can’t forget Montel Williams, who bravely went public with his MS diagnosis in 1999. I hope that Selma gets the support and treatment she needs to manage her disease. She’s also a single mom to a seven-year-old son and while she has a lot of resources it’s still got to be difficult for her.
Selma is shown with her boyfriend, Ron Carlson, and out with a friend in September and earlier this month. Credit: WENN
Well now we know why she was seen crying on park benches etc. for quite a while and seeming off balace? Best wishes to her.
I was thinking the same thing. I think she also had a really dramatic incident on a plane last year? Everyone assumed she was on drugs and/or having a breakdown if I recall correctly.
I have so much empathy for Selma. I pray she maintains a good support system. She was dealt a shitty hand.
Imagine how tough this would have been for a “regular” person, paying $800 a month for insurance and still getting hosed in doctor bills… for 10 years. No dis to Selma, just makes me think sad thoughts.
Yes, the last news I remember of her was when she blacked out on the plane. This poor woman, who knows what meds they had her on. I can’t imagine going through something like that as a public persona.
I was so sad to read this yesterday. I was told I had MS at 27 only for the doctor to say opps, guess you don’t have it post-diagnostics. Never mind the hellish night I spent weeping in the fetal position. For years afterwards I was terrified that the disease was lurking in my system ready to spring. Selma has a battle ahead of her but her attitude is positive and I just pray her network remains strong and intact.
10 years. Ugh. Wishing nothing but the best for her.
Glad that she finally got her diagnosis. I had to wait 15 years for mine (auto immune disorder and fibromyalgia) although it even runs in our family. Doctors are idiots, sometimes. Most of the time, actually.
That’s hard news but I am glad she’s gotten a diagnosis.
I was diagnosed with Multiple Sclerosis less than a week after my twenty-second birthday. I went to the emergency room and waited in the packed county hospital for thirteen hours before I saw so much as a nurse, let alone a doctor. That doctor was the first doctor who ever truly listened to me. I will always be thankful for him because he is the one who believed him, who gave me the referral to the radiology department and asked that my MRI be fast-tracked, as it usually took months for an appointment.
I was only twenty-two but I had already been sick for eleven long years. A few years ago my doctor looked through my three huge files from my pediatrician and told me it looked as if I’d had M.S. almost all along, as far back as fourteen years old.
It took over a decade for someone to believe me and tell me what was wrong with me. You would think a diagnosis like M.S. would depress someone, but I was just relieved – and perhaps even a bit happy, if only because I now had a name for what I was going through.
The toughest thing about M.S., for me at least, is how invisible it is. People can’t see M.S., so they often write off anything being wrong with you. My own grandfather apologized to me after my diagnosis, telling me he thought perhaps I was just something of a hypochondriac. That was a pretty common feeling with the people I know, friends and family alike. The only person who never doubted me was my grandmother, who sat with me for those thirteen long hours.
That’s the state of health care for someone without insurance. I am currently without coverage again because I can’t work, but I can’t go back to work if I can’t go to the doctor or afford my medication. Because I live in a state that did not accept the extra funds when the Affordable Care Act passed I can’t get the coverage I need. I am a living example of how our government is failing the disabled.
My father died three years ago because he was in Congestive Heart Failure and his employer did not offer coverage for his position. He applied for disability and was still waiting for a decision when he died. His approval showed up in the mail a week after he died, which was just…rage inducing. Universal healthcare could have saved my father’s life, but as our government has shown time and time again, the needs of the people matter little to them.
Like you said, CB, what hope is there for us if wealthy celebrities can’t get the health care they need? From where I’m sitting the answer is none.
TL;DR? The United States government doesn’t care if people live or die. The end.
Terra. All that you and your family have been through is so heartbreaking. Thank you fo sharing it. I wish there was something I could say besides I am sending hugs and prayers your way.
@Torontoe
Thank you so very much. It is difficult to talk – or write – about, but I do think it’s important to show an honest picture of what things are like for people in positions like mine. We get pushed aside and overlooked quite a lot or just flat out told that we should get over ourselves and suck it up. Needless to say, that’s not very helpful advice. I try to remain hopeful, but the last few years… it’s been tough. I already didn’t have much respect for government bureaucracy and nothing in politics has helped my opinion go anywhere but down.
Have you looked into Medicaid/SSI disability benefits? If you’ve been turned down, I believe you can appeal. Best of luck to you, honey. Your situation makes me angry.
The government would care if people stopped voting for idiots.
A good reminder why all US citizens should be voting on the 6th. I’m sorry you have gone through all this, f’n horrible.
I am so glad she finally got a diagnosis, I know how frustrating that is to go through. Terra, like you I have been through a very long M.S. journey as well. I am praying for you to have comfort!
At the age of 23 I was diagnosed with MS at Bethesda Naval Hospital. I had 4 plaques on my brain that was seen on the MRI. A day later I was told at Portsmouth Naval Hospital (my husband was stationed in Norfolk on a ship) that I was having conversion disorder making my right side not functioning. This was due to my husbands deployment and having a 6 month old to care for alone. For 16 years since I have been misdiagnosed with 5 different chronic diseases. The only person who truly believed me was my husband. I been called a hypochondriac, a prescription drug addict and mentally unstable. My father being the worst critic of all.
Last year I was officially diagnosed by a MS specialist. Finally having a firm diagnosis has done wonders! I don’t feel crazy anymore. I take interferon injections now and have better care and support.
Over the years there has been both parties in office and have had insurance. Yes our family will never get the time back that was spent chasing a diagnosis. All the different treatment my body has went through have been hell and it always will be. There is a light now though!
My stepson started showing symtems in his early 20’s and didn’t get diagnosed until near 40 years old. it was scary, frustrating, maddening and such a strain. He lives in Idaho and Medicare pays all of his med bills. Check with your state Medicare office. I truly wish you the best. The worst ting about this disease is the unpredictability of it, it seems to take over a different body part every time he has another exaccerbation. Take care of yourself.
The entire US healthcare industry has been captured by the industry and doctors and lawyers. I am sorry for everything your family went through.
Terra, please find a good disability lawyer who doesn’t get paid until you do. The one I hired got back years of disability I was owed—and he took his payment from that. The disabilty system is rigged to be difficult, so a lawyer is a must. Good luck!
Wishing her the best. Three of my cousins have this horrible disease.
I feel so sorry for her. Those years of not knowing whats going on and being called a hypochondriac or mentally ill are the worst. And please don´t understand me wrong, mental illnesses are real and as horrible as physical illnesses, but the tendency of many doctors to label every patient they are not sure about as mentally ill is dangerous for both physically and mentally ill people.
I was diagnosed with lupus after 2 years searching for the reason why I felt so horribly and 6 weeks ago after 2 years of successful treatment I was told again, it is all in my head.
Sometimes a horrible diagnosis can still be a relive and not knowing is the worst.
A lady I know who runs a gift shop has waited six months to find out results of another RA test. Just as my mother experienced 40-some years ago, the tests often don’t show RA markers until the person has crippling evidence. She is incredibly frustrated and just wanting to move ahead with treatment, when/if she can get a solid diagnosis.
MS, Autoimmune diseases, Parkinson’s, etc., seem to be guessing games in the beginning. And there are just so many diseases that are similar.
Some diseases can’t be easily diagnosed with a test. It a process of trial and error. It must be very frustrating to go through.
I had symptoms of an RA related eye syndrome (Sjogrens Syndrome) for years & my ophthalmologist would give me an annual note to my family doc to screen for auto immune diseases for 10 years….family doc would do eye roll and finally after years ordered blood work. It was negative. Few years later I got extreme joint pain in hands & went for physio….my therapist said the joints involved are same ones RA affects-go see a rheumatologist. I had to fight with my family doc to get a referral as my blood work for rheumatoid factor was negative. Finally saw rheumatologist and he said you cannot diagnose or rule out RA based on blood tests. He said he looks at blood work but it is also clinical assessment of joints & symptoms. Sometimes it involves ruling out other diseases. At first he thought I might have lupus so prescribed meds that would treat both lupus or RA. It’s a tough journey sometimes to get diagnosed especially if seronegative. All the best and I hope you are on good meds.
MS can be very hard to diagnose bc the symptoms can be very weird and vague. I was diagnosed with it four years ago. I was diagnosed quickly bc i went blind and i had clear lesions in my MRI (a lesions has to be 75 percent demyliniated before it shows up in MRiI) but most people take a long time. In the beginning, MS just typically doesn’t show up on imaging and doctors don’t diagnose off clinical symptoms only. It is true that people get blown off but it’s also true it is hard to diagnose at first. Frustrating disease. The good news is there are tons of good new drugs for it and I am completely fine just like many others diagnosed in the last five years. I wish her the best- i was thrown by the diagnosis but there is so much hope.
I’m sorry to hear this. Wishing Selma all the best treatment, healing and quality of life. I’ve always enjoyed her acting. You just never know.
Wishing her and all those who are living with MS the best. This may sound trite but both of my teens have serious but largely “invisible” medical conditions and the unexpected silver lining is that they tend to make healthier lifestyle choices than many of their peers. They seem to have a longer view of what’s important. That doesn’t mean that they don’t struggle or have really bad days but I am somehow less worried about them overall than I would have guessed.
This is quite timely as I’m seeing my neurologist today and being told if I have MS or fibre. It’s been a tough two years as I have lost a lot of muscle weakness and balance and have needed to use a walker on and off. I’ve been having to use it straight now for the past 7 months. I’ve also dealt with vision issues, tons of inflammation, and this new disease aggravating my other autoimmune illnesses (I lucked out and have 3 autoimmune diseases). While it’s been a stressful half a year, I’ll be relieved when I finally get a diagnosis and we can move forward with some treatment.
Best of luck to you, sweetie. I hope you get answers.
Thank you so much.
I hope things get better for you once you get a correct diagnosis and treatment.
I was recently misdiagnosed and now knowing what’s wrong can really cause more damage than the illness itself.
Best wishes to you.
Thank you. I have changed my diet while I’m waiting for diagnosis to an anti-inflammation diet (doing both the autoimmune protocol and the Wahl’s diet) and they are helping keep most of the worst symptoms away.
Unfortunately, her story is not uncommon. Chronic diseases in women are notoriously under diagnosed or severely delayed. Our system is literally so sexist that it’s killing people because we dismiss women’s ailments as overreactions. (The same goes for minorities, even if you’re curious.)
It’s an awful disease, and I wouldn’t wish it on anybody. I hope she gets the care that she needs.
you are right – the system literally killed my friend. She was bleeding all the time and her gyno kept saying she was just in early menopause (at 32), said it was all in her head, and didn’t test her further. Months later (still bleeding) she went to another gyno who said she had a giant lesion on her cervix that was visible to the naked eye, the other doctor just couldnt be bothered to look. She was diagnosed with stage 4 cervical cancer and died within the year. It was horrible.
This is heartbreaking. I always loved Selma, hope she gets all the support she deserves.
My dear friend is in the end stages of MS and will not last the next 2 weeks. She’s only 55 years old. I am sorry to hear of Ms. Blair’s illness. Damn this terrible disease to Hell.
I am so sorry about your friend’s suffering. MS is one of the misunderstood, terribly debilitating chronic diseases that are life altering, if not ultimately life ending.
People understand cancer is serious, but some don’t understand there are many other equally life changing (and often life shortening) diseases.
I have no faith in the health system anymore. Everything abut it is wrong, from the diagnostics to the treatment to the time to the costs …. just all of it. I am not surprised that 10 years can pass and no one gives a damn about the looming symptoms.
I hope she can find some alternatives to slow and ease the situation. Who knows, there could be a secret weapon out there to back it up a bit.
One of my best friends was diagnosed with MS about five years ago. I’ve learned so much about it through talking to her about what she’s going through. I wish Selma nothing but the best. I hope she has a lot of support in her corner.
I learned about MS nearly 30 years ago through the writings of Nancy Mairs. She was born in 1943 and died two years ago. When she was a young woman, she stubbed her toe and I think, fell, something that happens, not necessarily out of the ordinary, right? Years later she wondered if that was the first symptom. Later came toe drop and fatigue waking up the same way people feel when they go to bed, that tired. The essay is for everyone abled or not.
https://learning.hccs.edu/faculty/david.brenner/engl-1301/course-materials-important-read-religiously/critical-analysis-essay-assignment/reading-and-sample-analysis-of-nancy-mairs-201cdisability201d-due-6-4
I have always wondered why Blair seemed to drop out of sight just as her career was hot. Extremely sorry to hear this. 🙁
Brook Goldner MD’s dietary program can be a miracle for MS and other autoimmune diseases.
Would also consider low-dose naltrexone (LDN) in conjunction with Dr. Goldner’s program.
Hope Ms. Blair has access to physicians who will recommend the above in addition to other potentially effective treatments.
Urrgghh. Sorry, one thing the internet is REALLY GOOD at: ‘mis-medicalizing’ (like proselytizing for the uninformed).
Four (4) lesions on an MRI is not considered adequate for diagnosing MS. Headaches (especially some common migraines) leave lesions. MS can hide in your spinal cord, but too few Neurologists look for what can’t be easily seen. 10 years is the time it takes for most MS sufferers to develop enough lesions for diagnosis.
Sojgren’s Syndrome can be secondary to Rheumatoid Arthritis (RA) and cause dry eye/mouth/skin, and you won’t test positive for it. Primary Sjogren’s Disease is an autoimmune disorder that affects every organ in your body, strips your nervous system of its protective coating and causes lymphomas.
Dr. Goldner was diagnosed with lupus, not MS. The National Lupus Organization will tell you 80-90% of Lupus sufferers live a FULL life. And, recommending an opioid blocking medicine (naltrexone) to people suffering from chronic, debilitating pain is just mean (and a bit “vegetables will make it all better” stupid, too).
SORRY. I love this site because I don’t have to deal with this. Because this is my turned inside-out at MAYO Clinic and everywhere in-between escape from Dysautonomia, Primary Sjogren’s, Systemic Mastocytosis. And yeah, MS.
When you hit your 3rd ‘rare disease’ on the NIH directory of ‘orphan diseases’ bad fashion and good gossip = Best. Medicine. Ever.
Sorry. I’ll go put the kettle on…
My husband wa diagnosed with MS four years ago after suffering from symptoms for at least 3 years. It was so incredibly frustrating to go through so many tests and false diagnosis during that time. There were people, including family that attributed his fatigue to laziness. It was heartbreaking to get the diagnosis but also a relief to know there was an actual cause of all these symptoms. Luckily there are a lot of new treatments available. Many of them have not worked for my husband, but I hope that others can find relief in the new breakthroughs