Need help figuring this out
Hi all this is my first post. I have been told by my GP he thinks I have M S however I am 66 years old I do have lots of symptoms but my MRI came back negative just had a lumbar puncture yesterday but my next appointment isn’t till FEB 28. Which seems like a long time. But a Neurologist call me last night to set up an appointment for October. What am I to think.
Hello and welcome,
! First off, I am glad you found us, though I wish you had no need of a community like this one.
As far as your test results, well, I am not quite sure what is going on there, nor would I want to hazard a guess. If you haven't done so already, you can ask to be put on a cancellation list at the neurologist's office, so if someone cancels an appointment and they have an opening, you may be able to get in earlier than February 28.
That said, the space between appointments isn't that unusual. Frustrating? Yes. Unusual? No. I know the wait can seem interminable, especially when you are waiting on important test results. Add to that that the office called to schedule you an appointment for October and well, I am stumped. You can always try calling the office and asking to speak with the doctor (or his/her nursing staff) over the phone. Sometimes, they can offer you some clarification. Lumbar puncture results can be ready in 48 to 72 hours in some cases and as long as 2 to 4 weeks in others. Especially when diagnosing MS, they will err on the side of caution and make sure the results are accurate, so, I would be surprised if they knew the results of your test already.
I know this doesn't really clear anything up for you, but I hope it helps to know that you have a place to go to get some answers if you need them.
And again, I know that wait can seem endless, so please don't hesitate to reach out if you have more questions while you wait. We can't offer medical advice or diagnoses, for your safety, but we're happy to help in any way we can!
Best, Erin, MultipleSclerosis.net Team Member.Thank you for your response. Is 66 years old odd for MS I have had symptoms for years but never suspected it to be MS
In 2010 at age 46, I was initially told by a hospital-based neurologist that I was “too old” to have MS. Later I learned that he was not up-to-date on the typical age range and that his sub-specialty was migraines, not MS.
It sounds like you need to find a neurologist who specializes in MS and other neuromuscular disorders. I suggest that you try and see someone who is with a university-teaching hospital, if possible. Get copies of all your test results in advance. Test results belong to you, according to law.
Waiting until October is ridiculous! You must put yourself first. If you need to travel far to see an MS Specialist, do so.
FYI: The National MS Society states on its website that most people are diagnosed between the ages 20 and 50, but they recognize that younger and older individuals may be diagnosed with MS too. https://www.nationalmssociety.org/What-is-MS/Who-Gets-MS
I encourage you to call the National MS Society to speak with an MS Navigator at 1-800-344-4867. They are used to speaking with people who may or may not have MS and are unsure about what to do.
Good luck!
My first MRI was negative - and when they sent me for a re-test in a T3 the lesions were obvious. I was 64 when symptoms developed and wasn't diagnosed for 18 months because of that first MRI. No neurologist who suspects MS or any related condition should be sending patients for imaging in anything other than a T3.
thanks for sharing, it sounds like T3 machines are critical for an MS patient. These are the things that I feel like nobody tells you in advance. That's why it's so helpful to have this community to share the real, practical and important tips like this so we know what to ask for!
Thanks again,
Alene, moderator
