MISDIAGNOSED???

Hello all! Soooo.....Aside from the issues I've posted about that lead to my diagnosis (Right side numbness, episodes of bladder issues, left eye vision issue, jumpy hands and zingers, super sensitivity to summer heat, and MRI results finding a lesion on my cervical spinal cord, and of course, my brain) I am feeling well....too well? I still feel like I've been misdiagnosed somehow. Or I'm still in "denial" for whatever reason (I'd rather RRMS to Lupus or Fibro!)....A friend visited shortly after my diagnosis and asked if they (dr's) were sure it is MS because her sister was diagnosed and was on meds for a year before they "decided" she had been misdiagnosed.....

My question is, how frequently does that happen???

23 Replies

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  • If it's RRMS, you usually feel pretty normal between relapses. I pretended like I didn't have it for 10 years. I told very few people, took my meds, dealt with the occasional relapse and carried on with my life, but at a slower pace. It's just starting to catch up with me in year 11. Doctors are usually pretty slow and very sure when they finally diagnose it as MS.

  • Iona60,

    At what age were you diagnosed, if I may ask?

  • 44

  • Just this past June. I'm 45. I've been going to my primary care, Rheumatologists, pain clinics, Immunologists & Urologists for 6-7 yrs now trying to figure out what has been wrong w/ me. I always quit pursuing an answer when the symptoms would disappear for 3-6 mos at a time. Then I'd resume where I left off when new symptoms, sometimes including the same old symptoms would kick back in again for 2-3 months. The symptoms varied from burning & itching extremities, inner ear, scalp, underarms, & hives to numb limbs at night & loss of bladder control. Then pounding headaches, vertigo to severe joint pain. And also, they tested me for celiacs because I have wicked stomach issues w/ lesions & lymphocytes found in every endoscopy and biopsy. That was negative. They were also found in biopsies from my abdominal cavity where I had endometriosis (also a rare cancer in my ovary - Struma Ovarii) And every time the various symptoms came w/ wicked fatigue. I tested positive for ANA screening but w/ low titers. I also tested positeve for the HLA B27 test. I was told in May by my PCP that we were probably looking at a Fibromyalgia diagnosis but we were going to wait and see what the Neuro said in June after my MRI's. Which ended in the MS diagnosis.

  • Yah, that's what I'm talking about.....It seems like most of what I read on here is everyone in the worst possible moments of the disease....Seeing that there are others in the same boat as me makes me feel less nervous about possibly being misdiagnosed. Thank you!!!!

  • I'm glad you're feeling so well! Hurrah! I'm sorry I don't have an answer for you.

  • I know I sound like I'm complaining that I feel well, lol. I'm not. I promise. I'm just worried that I don't really have the correct answer. Though, an answer to the myriad of health issues is far better than not knowing at all! I am constantly complimented on my upbeat bubbly personality so now I feel bad that I am always complaining to you guys! I really am blessed w/ a roof over my head, a loving & supportive family, a job and the chance to wake up every morning ;) I do love life and all it has to offer. My friends are few but incredible people that make me smile every day. So things ARE great! It's just this little aspect that nags in the back of my brain.... -_-

  • You certainly aren't complaining. So many have posted here about the frustrations in getting an accurate diagnosis. I think you and I share many personality traits. When my PCP gave me the diagnosis from the brain MRI, I felt a little relieved to have a name for all these symptoms. Though the MRI seemed more than clear, the neurologist wants to do more testing because my CSF was negative. I don't think I can start treatment until she rules out any other demylenization disease. This certainly is a bizarre disease in terms of symptoms and diagnosis!

    I hope you're doing very well.

    Erin

  • Thanks Erin! Yah, she (my neuro) did a LOT of blood work also, to "rule out" other demyelinating diseases. So she felt, when they were all negative, that we had a clear answer. She is an MS specialist in our region. So I should have more faith. I just hear of so many MS people not being able to walk either from loss of feeling or muscle control / spasticity etc.....Maybe if I had one more CLEAR and unarguable relapse I'd be more agreeable to the diagnosis. But then after reading Iona60 and StacyHayward's responses I felt a little less apprehensive. Our crazy world sure does produce an awful lot of 'sick' people! Or I should say WE (the human race) have produced an awful lot of 'sick' people! Regardless, on we march one day at a time ;) I am certainly paying more attention to the roses as I pass them by ;)

  • Diagnosed at 22. I did really well for a long time too other than fatigue. Now at 38 wondering if I'm moving from relapsing to a more progressive stage. Very few relapses just gradually getting worse. Glad I've been taking meds all this time to maintain what I could.

  • And my MRI started as inconclusive and my spinal tap was negative, but now my MRI is very clearly MS.

  • Okay, now that sounds like the direction I may be heading....So maybe it IS MS and I'm just walking the path you walked for so long! And yes, the fatigue never really leaves, does it? I miss feeling energized! ;) Hopefully I won't get worse. For that I am sorry that you do seem to be getting worse. 38 is still so young. From what I've read, the meds are getting better and maybe the stem cell thing will take off! That would be amazing! Thanks Stacy! And I hope you find a med that stops the progression of your relapses!!!!

  • THANK YOU both for your responses! I'm more optimistic now. I know that sounds strange to be happy w/ an MS diagnosis....but I'm really just happy to have a diagnosis at all! (and also that it isn't Lupus or Fibro!)

  • Hi, Chowell71. I was diagnosed in 2010 and was doing great, especially after the dr put me on Gilenya. But it tore up my stomach so bad that I had to get off of it. I still great until I had a terrible relapse about 18 mos. later and a lesion appeared right on my brain stem and from then on my legs and arms were affected. I could still work (I was a litigator) but I wasn't the same and if I couldn't be my best I couldn't help my clients, so I went out on disability. Thank goodness you are still feeling well. Everyone is different, and you may do well for the rest of your life! I hope you do! You don't have to let this disease take over your life--but listen to your body. The fatigue can be awful, so when your body tells you you've had enough, listen to it and take a reading or TV break or even a nap. Hope you continue to do well and keep on enjoying life! That doesn't have to stop just because you have MS! I may not walk that great, but I can still ride my horse, volunteer at the Humane Society, etc. Good luck!

  • Oh my goodness, I want your life! Not the lesion on the brainstem, and I am soooooo sorry for you that you have that, but for riding and for volunteering at the Humane Society! I did most of my growing up in Vermont and had two horses that broke, trained and showed. My aunt has horses that used to visit and ride yrs ago. I can barely pull myself up to get into a high vehicle now, forget about raising my leg high enough to reach the stirrup and then to pull myself into a saddle! Lololololol, I'm giggling at the sight that would be! (I know I could use a mounting block....) And I have an enormous love for animals. Maybe when I retire (still about 30 yrs away at 75 give or take, if MS allows it!) that will be my new "hobby". :)

    I am optimistic that I will be okay! ;) (especially because I'm still trying to convince myself that I really do have MS, regardless of the Neuro's diagnosis! Lol).

  • You can have my life if you work at it. Eat healthy foods, exercise regularly (I go to a rehab facility near the hospital that has a giant salt water therapy pool and all the machines I need, except for the abductor and adductor strengthening for which I use tight elastic bands wrapped around my legs while sitting in a chair) and of course equine therapy. With every relapse I fall to the bottom again and have to start over with the pool therapy, but I do it regularly in the wellness program in the hope that I will be strong enough to come back after the relapse. Like you, I can no longer lift my legs high enough to mount either, so I use a mounting block, And then you don't have to pull yourself into the saddle--as you know, you kind of walk right on! I did this even while I was still working 14 hour days, and you can, too! With this disease, you really have to listen to your body and give it its due, but you can fight it at the same time! As I'm sure you've figured out, I am an animal lover and we rescue pit bulls, Right now we have two, one of which we rescued off the street while we still lived in Florida and the other of which we adopted from Best Friends Animal Sanctuary in Utah after they had rescued him from Michael Vick's infamous dogfighting operation in Virginia. And I am taking an on-line veterinary technician program because of my love for animals and to keep my brain sharp (that part's not working too well, LOL). I really wanted to be a veterinarian but I ended up a lawyer because of one bad grade in a chemistry lab which blew vet school for me. I could still have gone to med school, but if I was going to work that hard I wanted to do it for animals! I wish you the absolute best of health and all that life has to offer! You can do it!

  • Wow! You are my new hero! Lol. Really, you are amazing and super accomplished. We are in VA and also rescued a Pit Bull. She started off as being give to my daughter w/ the story that she was one of Michael Vick's rescue's offspring.(sad that people would 'market' their Pits that way) I doubt that this was true though, because she was so sick & week that the vet didn't think she'd live out another week. My daughter gave her to us because she couldn't take it emotionally if she didn't last the week. Anyway, happy ending, Stella is now almost 2-1/2 yrs old, a 60 lbs 'Pocket Pit' and one of the best dogs I've ever had. ;)

    I do try to eat healthy, except when I'm not, lol. And I am not active at all. I sit behind a desk for 8 hours a day. The most exercise I get is going to the restroom, the fax machine, and then when I get home I toss the ball w/ Stella for 10 mins, then I make dinner and take care of our 3 yr old. My Neuro strongly suggested I take up walking and/or Yoga at least 3 times a week. So I am building up to fitting that somewhere in my 3-1/2 hours from when I leave work till I go to bed....Dinner and our baby girl take up just about all of that 3-1/2 hours -_-

    But I have it in my sights ;)

  • Bless you, Chowell, for what you did for that puppy. She probably isn't a Vick legacy (thank goodness) because 52 were rescued from the raid on his property back in 2008, I believe, and held in local shelters as evidence until the SOB took a plea and they weren't needed any longer as evidence. Of those 52, 49 survived. Then they went off to various sanctuaries and fosters and law enforcement agencies where they became search and rescue dogs, etc., but to my knowledge they were all spayed and neutered. Our boy is going to turn 12 this January, as is his sister. So your puppy probably isn't old enough. Our boy is also around 60+pounds and he is definitely one of the bigger ones rescued. Pitties are the best--and most misunderstood-dogs ever.

    My kids were grown when I got MS, so having a 3 1/2 year old sure doesn't make it easy. And I, too,, used to sit at my desk from early a.m. to late p.m. except for when I was in court in a trial jumping up and down all day like a jack-in-the-box. I had to be reminded to eat and to go to the bathroom! But after that bad relapse in 2012, I decided that if I didn't change my ways I was going to end up crippled or dead, and to my mind, they were both the same. The whole time my kids were growing up we usually went out to eat or had take-out, and now one of my sons is paying for it; he is morbidly obese. I learned too late that I and my family come first. So please do try to make yourself a priority...Your child, Stella and hubby all need you. I don't know how much your husband participates in child and dog care and cooking, cleaning, etc., but he might just have to do more. Men sometimes just don't get it and have to be taught. Unfortunately, my husband had a stroke and became disabled himself in 2005, 5 yrs before my dx, and now we are basically one another's caretakers. Sometimes he just doesn't get it and needs to be told that I need help and what it is that he needs to do. And sometimes he expects me to be a mindreader and doesn't ask for help even though he needs it. Sometimes you just have to sit down together and hammer it out.

    I'm certainly no expert on any of these subjects; I can only speak from my own experience. But everybody is different. You've got to do what makes you comfortable and works best with your disease process. Best of luck, Chowell--I hope you find your balance point! keep us posted! Hugs, Sukie427

  • Sukie427, I am teary eyed after reading your reply....I'm an emotional person lately, lol. But also hearing what you have and are accomplishing...you are awesome. ;)

    I should've known better about the rescues and the spay & neuter policy since I have adopted from our humane society before. That time was a 10 mos old Rottie. I was extremely nervous about that one due to all I had "heard" and seen in movies! The worker there (who I trusted since I had been on the hunt for a dog for my daughter - yes the same one - and wanted a "good family dog") said to throw away my preconceived ideas because this was going to be the perfect dog for us. She was right. He was amazing. He had been trained w/ hand commands in lieu of voice. His owners were Navy and being relocated overseas and because of his breed they couldn't find a home for him. It apparently broke their hearts to surrender him. We had to euthanize him...now 3 yrs ago due to Systemic Aspergillus (sp)....It was devastating to all of us. ANYWAY!!! Way off topic! Lol. Welcome to my world! ;)

    I also have 3 grown children...19, 21, & 22. Number 4 was a surprise! Lol. We are actually adopting her. She's my 23 year old STEP-Daughter who is continuously "MIA"....We brought our babygirl home from the hospital and we're all she's ever known. Lawyer says the adoption should be final by the New Year! Woohoo!!!!

    My husband is SUPER helpful w/ both of our girls. But he's not home until between 6-8 every night. :( The days he's home early I employ his help. I too have to remind him of my needs. And like your hubby, mine also has a plethora of health issues....so we try to help each other.... ;) Just like you and yours, reminding, on both parts, and keeping open communication is key.

  • You are awesome, Chowell, and so is everyone on this site. It's marvelous that you are adopting your granddaughter...I have friends here who are in that situation and it isn't easy. I have always wondered if the fact that we are all affected by this disease makes us excel because to have to strong anyway just to survive. Everyone on this site has done something terrific and far surpassed most people. Maybe we truly deserve the name "warriors!" So soldier on, Chowell! You are one of my MS heroes for what you are doing for both of your little girls!

  • Jeez, SUPER teary eyed now!!!! It's nice to hear good things sometimes, ya know? I don't seek out compliments. I do what I do in life because I love life and most everything life has to offer. I love people, animals, beautiful scenery, art, music, even plants (though I do NOT have a green thumb! That belongs to my mother in law and my hubby. 84 yr old in law lives w/ us and helps w/ our girls...she is truly 84 yrs YOUNG!). I appreciate all that I have and I do have to remind myself some days that I have a LOT! I love my family and friends. I cry when I'm on facebook and someone posts a video of someone being mean to a child or an animal or just the injustices in the world. I cry watching the news and sometimes commercials!!!. I try to do "good" and am most always a bubbly happy person ;) Though in this message I appear to cry a lot!!! Lolololol. I agree w/ your observation of us all excelling in one way or another in life and that a lot might have to do w/ our 'disabilities' or just having to be strong to survive in this crazy world. And I have learned that there are SO MANY amazing people on here. Such big open hearts. (wow, I think I'm sappier than normal today! lol)....

    Thank you for all that you do and have done and for just being you and being here for everyone in our MS Family.....<3 :)

  • Same back to you, Chowell! And I cry every time the Humane Society commercials come on and I either have to turn them off or leave the room because they make me cry for hours.....It's OK to be emotional. There are some days I am just so depressed I don't want to get out of bed but I force myself, and there are other days that I just want to sit out in the sun even is it's cold. Now that I am not working any more and I can do what I want, that's exactly what I do! I even dyed my hair pink last year for awhile, just because I could! Just go out and do something crazy! It's fun!

  • OMG! I want to go pink!!! Just not sure how the guys at work would take it.....Lol..They are my family away from family and they are not very forward thinking. Of course I'm 45 and 3/4 of them are older than me! We have 14 people in our dept. Only 2 are younger than me, 2 are the same age and the rest are older. I wouldn't be condemned or risk my job or anything like that. They would just be like,"WTH????" Lol. Maybe I'll do it just for that! I pierced my eyebrow one year. Had a little safety pin in it for months (I lost the bar)....Man did they go nuts over that! Lolol. My back & left hip are completely tatted in butterflies and I have one behind my ear for my first 3 kids (a star for each. I know, not very original). I need to add one for my 3 yr old now! I do currently dye my hair a purplish black/brown. In the sun it's super brilliant and I get compliments from total strangers. Indoors it's just dark brown w/ a tint of red wine....I don't know....It IS time to do something, though. You've given me inspiration! Thank you for that! I'll let you know what I do :)

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