March 6, 2019
Six months ago I started experiencing numbness in my heal. Doc diagnosed me with joggers foot. In November I woke up with numb feet, hands (both sides). I went to the hospital and I was sent home, it was not a stroke.
Followed up with a neurologist and a brain MRI was done which was clear.
Every lab test you can think of was normal. Doc said it is not neurological.
Currently the numbness comes and goes. One foot is always numb. I saw another neurologist who ordered a spine MRI. She says she does not think it is MS because brain was clear and the fact that the numbness has lasted so long and comes and goes. I have no other issues.
I did have a MRI of the spine 1.5 years ago for back pain which was clear.
I am so scared. Which the doc said could add to the numbness.
My neurologist also said the physical exam was normal.
Could this be MS. If not what else?
March 6, 2019
Sadly there's so many things it could be... What I have been reading a lot on though is Lyme disease and how at last 20% of people who have it were misdiagnosed with MS first. Lyme is hard to diagnose and not well supported by the medical board so it's hard to find experienced doctors. All the luck to you and hope it's something curable rather than MS. <3
March 6, 2019
I was tested for Lyme three times in the last 4 months. Doctors have repeated every test.
I’m have so many questions that they won’t answer. My numbness comes and goes throughout the day in my feet and hands but my one foot always is a little numb is that consistent with MS? The MRI is tomorrow and I’m so worried. Can MS be in the spine and not the brain?
My primary doc said it’s not MS. Neurologist said she sees nothing in brain and exam is normal but she would like the spine scan. Said it’s very rare to be on spine only, is that true?
I am so nervous.
March 6, 2019
While it is very rare, there are cases of MS where lesions only appear in the spine as your doctor stated. MS can be difficult to diagnose with only one test type. The doctor may want to use an additional method of testing like a lumbar puncture to confirm the diagnosis. Here is some additional information. https://multiplesclerosis.net/diagnosis/
April 5, 2019
Hope22 - I'm sorry you are having so much trouble finding a definite diagnosis for MS. It is difficult for doctors or neurologist to come to that conclusion too. I went to all sorts of doctors over 4 decades and finally at last when I was 61 my most recent neurologist suggested right away when he saw me and examined me. He ordered the MRI and, unfortunately, there were all sorts of lesions in my brain and neck. I didn't have to have a lumbar puncture, just the exam and MRI. Good luck to you and hope that you find out something soon.
July 24, 2019
So I have a question or two if anyone can answer. About 10 years ago, I got really sick, sicker than I remember ever being. I continued to work, because there was just no way around it. I started feeling better, and then I started to lose my vision in one eye. I was referred to a neurologist who diagnosed me with optic neuritis. She said it could possibly be MS and sent me to get an MRI. The MRI showed no active lesions, so I lived the next 10 years denying the possibility of MS. Now I'm starting to think she may have been on to something. I've had some minor little symptoms over the years, (slight tremor in one hand, slight lhermittes that comes and goes, but nothing to write home about. Nothing major. But a week or two ago, my feet started feeling numb. First my toes, then the soles, then it started climbing up my calf. Now it's the outsides of my legs, and a band across my lower belly along with the feet. My toes on my right foot are the worst. It seems to be getting better slowly, and I have no weakness at all, but it is mildly disconcerting after hearing a Dr. Mention MS to me after a clinical event. I've been scared of it for the past 10 years! Every time my foot falls asleep i think "Oh no, the MS is coming to get me!" Lol
Anyway, I'm just wondering if this sounds familiar to anyone, and if it typically takes 10 years to start seeing symptoms? Another Dr told me Guianne Barre syndrome, but I honestly dont think any of them are certain. Any input would be appreciated, as I am sure something is wrong. I just haven't accepted that it might be MS yet. I have no idea how bad MS is or how long it takes to get that way. Thanks everybody in advance I know this is a long post.
July 24, 2019
Hi @loleonhart, thanks so much for sharing your story and reaching out to the community here. I understand this must feel very disconcerting and stressful, and I'm glad you reached out for information and support. MS can be tricky and difficult to diagnose. We recently conducted an interview with a neurology resident who explains more about lesions and why they're necessary to officially confirm MS here: https://multiplesclerosis.net/guest-expert/interview-neurology-resident/ I hope this helps clears up the diagnostic process and why it can be lengthy for some.
These symptoms you've mentioned are common for those with MS, but they could be a result of many other things as well. While we cannot offer medical advice for your own safety, I do encourage you to keep advocating for yourself and working with your doctors. Some of our community members have also said how helpful it can be a second or third opinion if that's an option for you.
Additionally, here's an article that talks about numbness and tingling: https://multiplesclerosis.net/living-with-ms/numbness-tingling/ As well as a forum discussion if you'd like to read and/or join the convo: https://multiplesclerosis.net/topic/numbness/ And here's another article about vision problems and optic neuritis: https://multiplesclerosis.net/living-with-ms/poor-vision-what-is-optic-neuritis/
Hope these are helpful to you and that you'll continue to keep us posted! - Shelby, MultipleSclerosis.net Team Member
July 25, 2019
Hi @loleonhart, your symptoms do sound like MS, but they could be from a number of things as well. They thought I had Guiamme Barre syndrome before my MS diagnosis as well. I'd say maybe it's time for another MRI, but more importantly, a specialist that maybe specialists in MS (because even if it isn't, at least they can help you figure that out). Getting the right diagnosis can be difficult these days, my best advice is to keep looking for the right doctor, it's a rough process, but important. I also want to say, don't be afraid, even if it is MS. Medicine has come a long way over the years and there are many treatment options now. Trust me, not knowing what it is, is far worse than knowing it's MS. Once you get it figured out, either way, you will feel so much better. That starts with finding the right doctor though. Best of luck to you!