Fantastic and informative MS thread! It took me 32 years to be diagnosed with MS and I have heard all the same lame excuses from Docs you all mentioned in this thread. My advice if you are still in "limboland" without a dx is to get a 3T MRI and see a MS specialist that works in an dedicated MS clinic, not just a general Neurologist. The MS Center at Cleveland Clinic is great and they are not shy to diagnose.
The stupidest thing I was told by a Doc was that my symptoms must be due to watching too much TV! LOLL!!
Thank you for your reply.
I am sorry to hear that Quix is not feeling well. :(
I do, however look forward to sharing my story with this community and getting to know everyone!
I will start a new post via question box.
Hi and welcome,
I suggest you do post your story, but it would be best if you open up a new post a question box, found at the top of any page. btw Quix is inactive and will probably not be able to respond but we have a good community and some one should be able to provide you some help and insight...
Thank you Laura and Kyle,
I want to share my story with everyone but especially want Quix to read it. I am not sure where I should post it. Should I post it here or start a new thread?
My story is a doozy and can help a lot of people to gain more insight / validation. I am still in limbo land but going to a specialist in August at NYU.
Praying for a DX.
Thank for your posts and please let me know where I should post my story for everyone and Quix to read (and sigh and laugh and get angry lol)
Hi Ree - Greetings from a fellow Long Islander.
Quix spends most of her time tending to her 3D life an pokes her head in here very occaisionally. I didn't want you to think our resident MD was ignoring you :-) This thread continues to be very helpful however. THanks for bumping it.
I am bumping this up. I read it a while ago and recentley posted this link on a MS forum I'm a member of. I find this article to be SO important for those undiagnosed; even those diagnosed, the medical community and our family/friends. They should all read it in its entirety.
Besides being extremely ingenious and informative and VALIDATING it is absolutely hilarious. I laughed and laughed and continue to every time I read it again (like tonight lol).
Please, please update us on the status of this becoming a Health Page. I also urge you to write a book with the title of this article.
I can not thank you and all the other members who have posted here and shared their stories. I have a doozy of a story as well that I will share tomorrow. Your stories have validated me and I now realize I am NOT crazy, that I absolutely have MS and I just need the right doctor. Actually I am seeing a MS Specialist March 10th.
Again, I will write about my story. Hopefully it will help others too and some of it may be added to the list of "Lies My Neuro Told Me".
Thank you, thank you, thank you Quix and everyone else SO MUCH!!!
So true Cathy! I've been told all them and then some!
I will write more at the very end of this comments thread to add "lies" I've been told by my Neuro.
I know this is an old post but I just love it and wanted to light it back up again. :)
Thanks for your input!
Before seeing the Neurologist the Physiologist suggest I go on Prozac. I was so firm with my answer, "No!" That he almost immediately replied, we don't get paid from Rx companies to push these. I won't take that crap. He suggested because I'm a single mom with children that the stresses of life must be causing my symptoms. UGGGH! I said, "Before you diagnosis me with depression be sure I'm not surrounded by arseholes first!"
Hi Terrill -
I'm not sure there is "too old for MS". I was 50 when I was diagnosed. While there is no real hereditary link in MS, there is an increased likelihood within immediate families. It may be that you actually had MS "before" your son.
Does your son see an MS specialist and is this the dic who brought up Alzheimers?
My son was dx with MS at age 27. I was having some weakness issues myself. Age 53 at the time. Clean CT scan. Two years later I am having fatigue, numbness, tingling, lightheadedness, memory loss, confusion and on and on. The MRI showed "numerous lesions in the frontal lobe with largest being 1cm". The neuro said I am too old for MS, my neuro exam was fine, I could be depressed and all people have brain lesions as they age. Also, outside mention of early onset Alzheimer's :(. Time for a different neurologist?
I know this thread has been quiet for a while but I thought it was fantastic. I have heard so many of these things from neuros I saw in 2005/2006 when I had a lot of unexplained sx. 7 or 8 'white spots' in sub cortisol white matter on MRI (aged 33). Radiologist said more than would be expected for age so MS can't be excluded. LP clear. Told it was all in my head, although I have continued to have left side weakness, especially in my leg (can't wriggle my toes most days, and when it's bad my leg drags as my knee weakens). When I started seeing my new partner back in 2011, he asked why my left foot wasn't as ticklish as my right (he liked to give me foot massages while we talked after work at night). It's just kind of numb most of the time.
Over the last month I've had a worsening of symptoms - couldn't move my left hand for a few days, got out of bed and collapsed on the floor when both legs gave out. Had my legs give out on another 2 occasions. Had an MRI last weak, and the technician gave me contrast as she had seen 'a couple of white splotches'. See neuro in 10 days - this thread has restored some of my confidence in be able to ask questions and maybe get an answer.
PS. I live in Queensland, Australia.
For our new folks with us who are in Limboland - I thought you might appreciate comparing notes............
Wow, it was nice to be missed. *eyeroll*
I'll come back and say 'hi' in another couple of years. Toodles! :)
can you bump my response or start a new thread with it, I don't know how, know you suggested it.
Golly, I think I've heard almost all of those. No lesions, no MS. Maybe it's a stress reaction. The tremors are from anxiety. It's a pinched nerve why your urethra shoots urine out unexpectedly. It's psychological. You must be depressed. It's migraines. Nope, not enough. It's complex migraines. Many people have problems with the heat. There is nothing wrong with you.
It's really hard not to get down on yourself when these mantras keep getting repeated ad infinitum and the cash register keeps chinging along the way.
So if I ever do get the one brain lesion required to meet the MSologists criteria for making a dx, will I then get told it's my age, from smoking, or from migraines, despite the fact I've had no lesions from any of those yet?
SAra- I LOVE this story. Would you please copy it and start a new thread so others can see that the direct approach can work? Congrats on finding a good neuro - we keep swearing they are out there.
Thanks, beach. We were writing at the same time, but you explained it better.
Bumping is just a matter of writing a new comment in a thread, because any new comment will move the thread to the top (provided you have set it so most recent post goes to the top, which is the default. If this doesn't make sense, look above all posts for forum settings.).
So by writing this, I am automatically bumping it to the top.
What I was asking you to do, though, is to start a whole new thread about your wonderful and daring encounter with your new neuro.
Bump means make this thread show up on the front page. Adding a comment bumps the thread. So it's bumped.
But a lot of people don't read old threads like this one (started a long time ago), even if they're on the front page. Ess was asking you to start a new thread.
You can copy the text of your comment (which I loved!), go to the main page of the MS forum, click on New Question or Post a Question or whatever... big, orange button. Then paste your comment there. I'm sure people will get a big kick out of it.
By the way, I feel like mailing Quix's original post to all of my former neuros, lol.
can you bump it up then? I don't know how to bump.......
Wow, Sarah, that's great!!
Most of us have already read this long thread, or a lot of it, so may not look at this update. So could you post your news again in a new thread? I'm sure Quix and many others will be delighted to read it.
Best of luck with everything,