Trying to get a diagnosis
I have been having symptoms of what I believe to be optic neuritis, on and off, for 3 years. I have suddenly began having terrible numbness in my hands, especially while sleeping. My arms feel weak, as well as my legs. When resting my leg muscles twitch, constantly, and HORRIBLE calf cramps in my sleep. I have a very intense tingling sensation in my back. It occurs almost daily, sometimes lasting hours. It occurs in the exact same spot, every time. My face also weirdly flushes at the same time every day. It’s so strange. I went to the doc and he originally told me that he suspected lupus…. Because of the flushing. However, blood work came back normal. I went to the eye doctor, multiple times. My vision at times is so bad, I can’t even read the word Stop on a stop sign. They finally gave some sort of test, which I failed. The eye doctor sent me for an MRI of my brain, however, it came back normal as well. I know SOMETHING is wrong, I just don’t know what it is. I would like to know everyone else’s symptoms and if you had trouble getting a diagnosis. Thanks in advance!
I'm so sorry to hear that you're struggling with these symptoms and having such a hard time getting answers to them. Getting an accurate diagnosis of MS can be really challenging because there is no single test that will definitively diagnosis it. It's a time when you have to be a strong advocate for yourself and based on your post here, you're clearly doing that. I just want to acknowledge that it can be really exhausting doing so, especially when you're not feeling well. It can also be hard emotionally too because you're likely not feeling heard the way that you want to be from your doctors. I'm so glad that you connected with this community because so many of us can certainly relate to that experience. The other tricky part with MS is that it shows up differently in each person - hence why it's also called the snowflake disease - so another person's symptoms don't necessarily always match up with the next persons. But each of our experiences are very real and should be taken seriously. What I thought might be especially helpful for you is this article that was written with tips on how to get your doctor to listen. You can take a skim through and as I always recommend, take what resonates and leave what doesn't. https://multiplesclerosis.net/living-with-ms/how-doctors-listen
Wishing you the best, and please keep us posted on your progress and you feel comfortable doing so!
Best
Alene (team member)I went to my doctor in 2007 complaining of numbness and tingling to the left side of my face and hand....had an MRI - have the lesions but nobody will diagnosis as MS....fast forward to now. I have horrible pain tingling in my feet and neuropathic pain, tingling and numbness in my left arm and side of my face and vision issues in my right eye. Optometrist tried to tell me i need glasses....that's not the kind of vision issues I am talking about....like parts are missing. My doctor retired....now I don't have one and have nobody that will or has diagnosed me with MS and I am also at a loss......there are days when I can't sleep because my feet are so tingly and days when after walking for a few hours I am spent.
This whole process of getting answers has been a nightmare so I totally get what you mean. I also feel like because I look fine.....and play soccer, go to the gym that nobody believes me. I am just trying to maintain a "normal" life.
, goodness. I am so sorry your concerns weren't more fully addressed back in 2007! Whether you are dealing with MS or another condition, you deserve to be treated with respect and to receive a diagnosis, whatever it may be.
I'm a bit surprised by your optometrist's response, as quite a few of our members have been referred to a neurologist after their optometrist spotted something concerning during an eye exam.
I know it probably feels like you are back at square one and I know that must be frustrating. I do hope you are able to find a new doctor. And, yes, you may have to start the testing process all over again, but I hope you are able to get a proper diagnosis this year!
I know it's not the same, but we believe you. This community knows how isolating living with MS (and other conditions) can be.
You're not alone here!
Best, Erin, Team Member.
