Holls 1505 Posted January 19, 2018 2 minutes ago, liv07 said: Probably not, lol. I think they'd have to stick a needle in my tongue ... Lmao LIV!!!!! It will get better. You don't have it. It's not subtle. And you know that too. Hugs !!! Don't let your mind rule you. 1 Quote Share this post Link to post Share on other sites
Mike L 86 Posted January 20, 2018 You do not have MS. Trust in what the doctors are saying even though it’s hard. I would get into therapy once a week. It helps me! Quote Share this post Link to post Share on other sites
Holls 1505 Posted January 20, 2018 10 minutes ago, Mike L said: You do not have MS. Trust in what the doctors are saying even though it’s hard. I would get into therapy once a week. It helps me! Hi Mike. Are you talking to Liv or Doxie? Doxie has been diagnosed with MS and Liv fears als not Ms and she hasn't been to the Dr. I have ALS fears as well.. I have been to the Dr but it's still a big fear.. I'm in therapy too.. it is slowly helping me change my thinking patterns. I'm glad therapy is working for you!! Less anxiety or none mean soooo much 1 Quote Share this post Link to post Share on other sites
Mike L 86 Posted January 20, 2018 My mistake, I meant it to Liv. I should have specified. I know someone with MS and you’d never know it. He just keeps up with the doctor and is in great shape. Anxiety can make us feel like we have all kinds of things and while sometimes we do, many times it’s nothing. 2 Quote Share this post Link to post Share on other sites
Holls 1505 Posted January 20, 2018 Just now, Mike L said: My mistake, I meant it to Liv. I should have specified. I know someone with MS and you’d never know it. He just keeps up with the doctor and is in great shape. Anxiety can make us feel like we have all kinds of things and while sometimes we do, many times it’s nothing. I agree!! I've had some pretty crazy symptoms on the anxiety train. 1 Quote Share this post Link to post Share on other sites
DoxieMoxie 316 Posted January 22, 2018 On 1/19/2018 at 2:01 PM, liv07 said: The woman's who's dad has it. She also works with people who have it in some kind of care capacity. She has since clarified what she meant to me, but I think she was mainly backtracking. She actually said it doesn't happen overnight where one day you can do something and the next you can't, and that was a like a red flag to a bull for me, lol ...I also asked her what was she even thinking posting that on a HA thread. For pete's sake, how is that helping anyone?? Anyway, since then I've been able to pick her brain a lot about bulbar symptoms. She still insists it's a slow, gradual subtle thing though :/ But her dad has had it for 10 years, so he's already an outlier ... Liv, this is exactly why it is important to ignore all these anecdotal accounts. The vast majority of ALS patients with bulbar onset do not describe their onset as gradual. The typical onset is noticeable slurring. Of course it is progressive, and gets worse and worse, but it is not typically a sneak-up-on-you type of onset. Now: 1. There will always be outliers. If this woman's dad has had the disease for 10 years, he is already an extreme outlier of an already very rare disease. As you well know, most ALS patients live 2-5yrs from diagnosis. 2. Subjective symptom accounts, even from caregivers, can be unreliable. Suppose someone started coughing or clearing their throat a lot, for several months, and then they started slurring. The tendency is to immediately say, aha, the coughing/throat clearing was an early ALS symptom. Well, it may very well have been completely unrelated. So the safest is really to stick to what the medical literature out there has been able to document. And yes, Liv, I'm sure you think that you may be an outlier too....but I just don't think that you are that special!! 1 Quote Share this post Link to post Share on other sites
DoxieMoxie 316 Posted January 22, 2018 On 1/19/2018 at 5:44 PM, Mike L said: You do not have MS. Trust in what the doctors are saying even though it’s hard. I would get into therapy once a week. It helps me! I actually do have MS (recently diagnosed), but also have HA. I know it's confusing, but it's because we started a side ALS discussion on my MS diagnosis thread Sorry for the confusion Quote Share this post Link to post Share on other sites
DoxieMoxie 316 Posted January 22, 2018 On 1/19/2018 at 6:00 PM, Mike L said: My mistake, I meant it to Liv. I should have specified. I know someone with MS and you’d never know it. He just keeps up with the doctor and is in great shape. Anxiety can make us feel like we have all kinds of things and while sometimes we do, many times it’s nothing. Thanks, Mike. This is always really encouraging to here. I've been reading lots of similar stories on the MS forums, and it is also what my neuro has told me. I really only have sensory symptoms at this point that are well controlled, and haven't experienced any crazy side effects from the meds. Staying on a good diet and actually increasing my exercise regimen. So far, so good LOL Quote Share this post Link to post Share on other sites
liv07 92 Posted January 22, 2018 Goodness, I am so sorry. It wasn't my intention to hijack this thread and create confusion. Doxie, you are a amazing individual, taking the time to write that to me while going through this yourself. Thank you! xx Quote Share this post Link to post Share on other sites
DoxieMoxie 316 Posted January 22, 2018 1 minute ago, liv07 said: Goodness, I am so sorry. It wasn't my intention to hijack this thread and create confusion. Doxie, you are a amazing individual, taking the time to write that to me while going through this yourself. Thank you! xx I don't mind one bit! Was just explaining to Mike why he may have been confused. 1 Quote Share this post Link to post Share on other sites
