Waiting on Diagnosis and Scared of Symptoms in the Meantime
Has anyone had some scary symptoms they think point to MS, but have no one to discuss them with until scans etc can be organised?
I think I've had progressive symptoms for nearly 15 years now. A few weeks ago, I lost the ability to move the muscles in my upper thighs. I only realised that 2 days ago, and had been worrying for weeks as to why the backs of my legs felt so weak all the time and it felt like I was balancing rather than walking. Now I realise I can't use the muscles in the fronts of my thighs.
I have about 12 other symptoms that could be related to MS, and it this point I'm scared people aren't and won't take me seriously. I'm 37 female but look 18 because I'm so short, so people tend to throw away things I say.
Has anyone else felt this way?
Hi,
!
First off, I am truly sorry you are experiencing these issues and have been struggling to get a proper diagnosis for so long. It shouldn't take this much time and effort to get a diagnosis and treatment. My heart goes out to you, as I know how stressful and hard being undiagnosed and in pain can be.
And, I know a fair amount of our community members can relate. From having symptoms dismissed by doctors and medical professionals, to having family and friends doubt the seriousness of what you are experiencing, I think our members have seen it all. And, again. It shouldn't be that way.
I know you have already been advocating for yourself, but I wanted to share this article about being a self advocate and how to keep showing up for yourself, even if the medical community is letting you down -- https://multiplesclerosis.net/living-with-ms/self-advocacy. Also, I thought you might find this article (especially the many member comments following the piece) about having doctors dismiss your symptoms a worthwhile read -- https://multiplesclerosis.net/living-with-ms/why-doctors-dismiss-what-you-can-do. And, lastly, one of our health leaders wrote about that frustrating time between experiencing symptoms and being diagnosed, kind of like you are right now -- https://multiplesclerosis.net/living-with-ms/what-is-it-like-to-not-be-diagnosed. I do hope others see your post and chime in, as I know you are far from alone in what you are experiencing.
And, please, keep us posted on how you are doing, if you feel comfortable doing so!
Best, Erin, Team Member.Yes, there are a lot of scary symptoms that come up, for me it'll mostly be just a flair and then things calm down. Always here when you need someone to talk about this.
With the mimicry of symptoms to many other possible illnesses, it does become difficult to diagnosis, that said, my neurologist is the head of the neurology department at USF. He said that an MRI was the most direct route of diagnosis.There are certain markers available on the brain which are classic to M.S.
Also, Lyme Tic disease, another illness which mimics M.S. is also hard to diagnose because a huge percentage of those tests only scan for 3 types of Lyme Tic Disease and there are 11 types.
Muscular Dystrophy and FOP are rare genetic disorders with MD turning muscle to fat and FOP turning muscle to bone, at 37, either of these would have odds at about a billion to one.
Have you tried a teaching university hospital for a diagnosis?
