I know the brain lesions and facial numbness are not normal and that makes me believe it is ms. I guess its hard to believe because all of my neurological ekg and spinal tap with no bands were normal other than imflamation shown with high igg levels in spinal fluid. I feel like i have been making a lot of progress in terms of being positive and a lot of my anxiety has gone away but feeling a bit down about not knowing for certain if it is or could be something else but I when i think about it more what else could have facial numbness and brain lesions? And I certainly dont want to wait for things to progress or another flare up. You all have been a great support and so helpful in sharing your stories and experiences with me and it has helped a lot. Blessings
Has anyone ever questioned their ms diag... - My MSAA Community
Has anyone ever questioned their ms diagnosis?
First thing first, you need to try to calm down and not look for things that aren't even in your drs scope.
Breath! And again! Now. Put google away! Like right now!!!!
You really need to talk to your Dr about this. Do you have an MS Neurologist? If not get one! Call 1 800 532-7667 and ask them to help you.
Don't look for trouble! 🤗💕
Jes🌠
Well said Jesmcd2
I got a second option from my current neuro
Because my current neuro refused to sign off on what my mother wanted her say and refusing to deal or believe that I had MS my mother in the being made me go to the mayo clinic (big waste of time) that dr said I had it but said I had a different form of ms and then he wanted me to continue to take the meds I was on even though they didn't fit what he was saying I had. From the start I knew that dr wasn't a good dr and he was not someone to listen to. He talked to my mother and sister never me. So how can you diagnose me if you never talked to me I'm the one who knows what's going on with me.
Then she demanded I go to another dr. That was a big fight and he husband begged me to just go so I did. Her 2nd dr told her I had it and that my current neuro was the best in the business and was well knew for her work and that he refers to her when he has questions
After that she left me alone. This is the short version of the battle btwn my mother and myself. I've written about b4 on here.
My mom actually has a hard time believing i have ms. She does not really believe it fully and thinks it can be something else. The reason why i am confused is because my sister in law had pain seizures numbness lesions and after many months was diagnosed with lymes after more thorough bloodwork but the first time the regular lymes bloodwork showed nothing
Yes other diseases can be mistaken as MS so it is best to get a second opinion.
I think it best to get a second opinion when it comes to any major diagnoses or medical procedures . That just my take on things
So my second opinion said not ms yet but likely ms first said it was so i was so confused considering a third and i already started ocrevus
Didnt want to risk any increase in lesions or a relapse
Hi I hope you don’t mind me jumping in I was diagnosed with ms my mum had it and I have multiple scarring of the brain I had a second opinion and told I do not have ms more lupus or cognitive tissue disease but all my bloods are negative apart from ace blood test.
I don’t really understand the process but dr Malik in charring cross hospital is supposed to be a expert hope this helps xx
My mother told me I had a pinched nerve because her other daughter had one.
Have you had an MRI? I did not question my diagnosis 34 yrs ago but I have since then. However, there is nothing else that fits my picture. I think that questioning is normal, but don't worry about it.
I had an mri which showed brain lesions nothing in neck or spine. Normal neurological tests and normal evoked potentials test. No rings in spinal fluid just high igg level. Which is why its a difficult place for me because i dont want to risk doing Nothing in another relapse happening or more lesions appearing
Even though I started treatment I often am wondering now
Are you still on a DMT? Ken 🐾🐾
Yes, Copaxone since 1999.
Has your neurologist mentioned anything about quitting medication after so long?
No, and I don't think he will because he has told me numerous times that if my insurance tries to force me to take the generic, he will fight it and say that since I have been stable for so long, it would not be beneficial to change.
However, I do plan to ask if he thinks there's an age where he would take me off of DMT because I've read some people saying that their doctor stops it at 62.
I am hearing that at 65 and stable and been on DMT over ten years, there’s a question if it is doing anything?
Uh, keeping a person stable?
I would say yes it is if the person is stable with no new relapses. I'm 64 & my neuro thinks that being on a DMT is beneficial no matter what age you are as long as it is keeping you stable. I have no intentions of stopping my DMT until I'm 6 feet under.
Even though I started treatment I often am wondering now
I still wonder at times about my diagnosis, but can’t come up with anything that matches my symptoms so well. I’ve read that 5-10% of patients with definite MS aren’t positive for oligoclonal bands. I do wonder if I had started treatment 20 years ago after the CIS, would I still be where I am now. Would I have reduced the multiple lesions? Then again, there wasn’t much in the way of treatment then.
I also read the same thing. It seems normal to wonder
mm1527mm I definitely was in dis-belief during the first 6 months or so. I was a very healthy, active 68 yr. old!! when my first symptom started. Burning, tingling on my back one evening, thought maybe a light case of shingles. Then by 4 AM the next morning, I was numb on my right side from my ribs down, then we thought I'd had a stroke and went to the ER. After 6 hours there, tests, cts, blood & urine tests with no results, was released and we headed out for some breakfast. By the time we'd finished breakfast, I was totally numb all the way around my ribcage down,☹️My feet could not even hold sandals on, Fortunately, we were close to my Orthopedic Dr's office. I was seen immediately, and after a through exam, including x rays, and an MRI left with no answers, just possibilities. It took weeks to get into even a general Neuro. Another exam, blood, urine tests. Mri the next day, Cold blooded doc calls next day ( Calls!!) says you have MS, gonna start you on Tecfidera. I'm in tears, he says don't worry, you've had a long life!!!! By the next week, we'd picked up all my records, I had an appt with a group of MS Neurologists, that are a part of a huge University teaching hospital. Again, after blood tests and very intensive MRI's, without and with contrast dyes. I received the tentative diagnosis 6 months after going numb. I hear that's pretty quickly. My active lesions are in my spine, not in my brain. I take "symptomatic" meds for my symptoms and just started "Infusion" MS medication in July. I don't feel comfortable enough with my strength and balance to ride a bicycle, but will find another form of exercise to help stay fit. At this point, over 3 yrs since the first tingles, I still think it's all a bad dream, ask my hubby to wake me up, PLEASE!! Sorry to be so long winded, but I think we all have times we want our old lives back😊🌸🚴♀️🌺🌉🌊🌹 Now, I'm here at the best forum ever with a whole group of friends, and we re here for you too!
This forum has been so great. Its so nice to see people going through the same thing. I told my husband the same thing a few weeks after i was told it was ms like a nightmare that i need to be woken up from. I often see old pictures and think thats when i was healthy and it does make me sad although i have been much more positive than i was and less anxious. The wonderful people on this forum have been a blessing 🙏
mm1527mm I do feel we will see light at the end of the tunnel. I said the same that it was a nightmare that I couldn't awake from. I look at Pictures to where I would be dressed up to go a Christmas Party and now I haven't worn high heels in 4 years. Or I look at my t-shirt when I would participate in Relays. I do miss it. But I have met some amazing people along the way to this point like yourself. People who fight everyday that they will get better and offering others encouragement. From Stories like yours it gives me the will to feel better and to keep trying. We have to do it together and I know we will. Have a wonderful weekend. I must figure out what I will sing tonight at Karaoke. Stay busy. It has helped me to not think about the past or how I am feeling. Do something fun this weekend. 
Thank you!! That sounds nice! Will do 😊
When I was in the first year of "Limbo" I sure thought it was all a bad dream! I prayed with my pastor and he helped me see the way to just give it to God. because He has a plan for me and each of you. I then was at least able to be more optimistic about life!!
Love this! I have also prayed with my pastor ❤️
The good news is, time will help confirm your diagnosis. The bad news is time will help confirm your diagnosis. But you are on a DMT, which is a good thing. So maybe you won't ever have another episode. And remember, you are not alone!
Every few months I question, Can this be true? And I review my test results and symptoms and look thoroughly for anything else it can be. But with O-bands in my spinal fluid and none in my blood, plus lesions in my brain in the “MS places”, and all the weird neurological symptoms, I just can’t find anything else that matches.
I think it’s totally normal to suspect that a nightmare is not real. Or maybe that it might be something with a cure. I struggle with that still, and I got my diagnosis 3 years ago.
I've felt that exact same way and it is good to know that others feel the same. For the longest I was in denial. It's ok that we feel that way. Have a great day.
Thanks you too!
I questioned, got a 2nd opinion early on, he got a spinal tap which was normal but the 2nd opinion neurologist was then sending me on a wild goose chase for other diagnoses and when I came in for follow up he said, of course you have MS 😜
seriously,you poor dear!you are having a really rough time,I think alot of us have been there,done that.so many of us has spent years being diagnosed.there are so many symtomes(spelling sorry) we are mis-diagnosed all over the place.It is the process of elimination and a good neurologist.time will tell all but the sooner the better
I didn’t question it, but I was diagnosed quickly. It was a rather surreal moment for me. MS was not, even remotely, on my radar. I thought I just had an inner ear infection. My family pushed for me to get a second opinion, which confirmed it. And here I am, 5 years later in a very slow decline.
I thought about a second opinion also after my neurologist said that I had MS in my brain. I couldn't believe it but after thinking and following my Dr.'s medical career who has been a MS specialist since 1979 and still carrying the same medical brief case. I changed my mind and on my second visit he told me that I have 5 or more lesion on my spinal cord and that shocked me once again.
don't do that mean game we play(what if?) we do that you know.ms=worry.you can do this what ever the outcome.remember Warrior!
I was so frustrated prior to my MS diagnosis; my blood test showed I 2as a Super Hero; my spinal MRI showed no pinched nerve (I was convinced this was the culprit) then my brain MRI showed the leions, but they were only in my brain. I didn't understand how that/those could cause all the problems that I was having; now that I'm 1.5 years into this fun journey and better educated, it makes sense. I must say that when I was first told, after the brain MRI, I was relieved to have an answer after 4 years of looking for one.
Hi julie what dmt are you using?
Ocrevus. Really works well for me.
Great to hear i go for my second half dose in one week
I go in 10 days for my 4th O, hoping this will be the proverbial Silver Bullet!
You will do great! Had my firs full dose last week! Blessings!
mm1527mm , a diagnosis of 'ms' is tough. My PCP diagnosed me because the neuro that I was seeing to find what was ailing me for 9+ years didn't think that I needed an mri. He (neuro) was telling me that the mri that was done over 3 years ago didn't show anything. When an mri was finally done, it showed lesions on the brain, and a more on my spine! Go figure! That was when I sought a second opinion, and another neuro. Communication is key. Happy that you found this forum, but not happy that you have 'ms'. Get another opinion, stay on a DMT, and
Keep Smiling,
Carole 
Thanks Carole!! 😊
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