Potential MS?
Hi all!
This is going to be a long story, so thank you to anyone who reads through this. I'll start from the beginning. I'm Type 1 Diabetic and currently 29 years old.
Over 10 years ago, I first noticed issues with my knees and balance. I've since been since for Physio 3 times, of which nothing has helped. I'm now being sent to a Knee Specialist...
My knees give way on me now and have done for a few years. It can come out of nowhere but usually my knees start to hurt and then it goes. Luckily never seriously hurt myself (other than hurt pride when its in public!).
On top of this, about 7 years ago, I started getting Facial Palsy in the left side of my face, followed by about 5 years ago Neuropathy. They put that down to my Diabetes but when I had the electrode tests, they couldn't be definite but put it down to it. I've had a brain MRI scan as well which shown no issues.
More recently (about 2 years ago) I started getting restless legs and cramps in my feet. I put this down simply to restless leg syndrome and the Doctors upped the anti-depressants for my Neuropathy as a result.
This past saturday however, things seem to have dramatically shifted. My knee gave way and they've now both been painful since, with the one that gave way have some restricted motion. I've been having tremors, blurred eyesight in my left eye and have been incredibly unsteady.
Now people may think I'm also quite lazy but I am constantly tired also! I could easily sleep my day away I'm always so tired. An example of this, on a Sunday I do my food shop, usually about 11am after getting up about 9am. By 1PM, I nap until about 5pm, followed probably by another at 8pm until 9pm. I then go to bed at 11pm and sleep straight through to the next morning. This obviously doesn't work in the week when I work (from home) but I could easily do it then to.
Using the website https://patient.info/symptom-checker I've put these symptoms in (tingling toes, cramp, neuropathy, blurred vision, burning eye, tremor, unsteady, knee giving way, restless legs, elbow pain, stiffness, facial palsy) and the only result that comes back is Multiple Sclerosis.
As I've been passed back and forth between Neurology, my GP, Physio and other places for various bits and pieces of this, none of them have thought could it be connected but I'm starting to think they might be.
Therefore I'm wondering if this sound similar to anyone elses story on here pre-diagnosis or whether I'm being hypochondriac?!
Sorry for the long, rambling post but its all going on and I'm not sure where I stand.
Well, there is definitely something going on,
. You are not being a hypochondriac and please do not let anyone make you feel that way. Medical professionals might sometimes be dismissive like that when they don't have answers, so you really have to be strong and advocate for yourself. Have you had MRIs of your spine or your optic nerve? If not, that should probably be the next step, especially since you are experiencing blurred vision. Not everyone with MS has lesions in the brain. Some are limited to the spine and/or the optic nerve. There are several health conditions that mimic MS and should be rules out. Here is an article that lists them: https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions. But it also sounds like you have enough symptoms to push for a better MS evaluation. Here is an article about the diagnostic process that might help you better understand the next steps: https://multiplesclerosis.net/diagnosis. If your current neurologist refuses to do further testing or is unable to give you any answers, you might want to try an MS specialist. The National MS Society has a tool for finding one in your area. Here is a link: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. I hope this helps and that you get answers and relief. Keep us posted if you feel comfortable doing so. Best wishes! - Lori (Team Member) I'm really hoping it is! I don't think it will be much sooner though unfortunately 🙁 
, UGH! That's a really long wait (me, stating the obvious, here). Hoping that you're pleasantly surprised by an earlier opening in their schedule! Best, Erin, MultipleSclerosis.net Team Member.
Hi Names_Pending
you could do lumbar puncture and/or evoked potential tests.
Also could go on DMTs now anyway, if you can source some. https://multiplesclerosis.net/forums/where-can-i-buy-dmts-without-prescription-at-my-own-riskYeah I'm waiting for the Lumbar puncture! 70 Weeks to wait though!
Hello. My lesions were seen in my spine by Orthopedic MD who was injecting steroid into spine under MRI and then she did MRI spine and brain the the lesions were in spine. She immediately sent me to Neurologist specialist in MS. It’s a long wait sometimes but you want to be absolutely sure of diagnosis. Like Lori stated there are a lot of diseases that mimic and have same symptoms. Read the articles. Get to MS neurologist. Lot of resources out there.
Yeah that seems to be my issue! Tomorrow I'm going to be super stern and try to just say what my issue is, without just saying I think it's MS. one thing I have learned over the years as a nurse doctors respond better when they think they are the ones with the diagnosis decision. You tell them what is going on with you. Allow them to come up with diagnoses based on findings from test and assessments. My hope is that you get Neurologist that allow for questions and feedback. It helps when you know that your team will openly communicate and address your concerns. Like I said it’s a long journey sometimes but with the right team you don’t feel alone.
