Undiagnosed

By kmm524al

1 min read

I started in March with numbness in my toes on my right foot. Then it has progressively gotten worse. I have numbness and burning from my hips down. I’m tripping and have fallen a few times. Urinary retention. I have had MRI, nerve conduction and my neurologist can’t find anything. I’m a nurse and I am convinced it’s MS. I have been having severe spasms in both legs to the point they lock up and jerk. Extreme fatigue. My husband says I’m sleeping too much. Does anyone else have this? I feel like I’m going crazy... neuro is sending me to the big city nearby to neuro/muscular dr but they can’t see me till July. ??

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Lori Foster Member
Hi @ kmm524al. July is an awful long time to wait. Have you asked to get on their cancelation list? With the pandemic situation, people who made appointments long ago might decide to opt out for now. It is possible that lesions will develop a few years down the line, but there are also several other health conditions that mimic MS and should be considered. Here is an article about those conditions from one of our advocates: <a href='https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions' target='_blank'>https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions/</a>. I hope you get to the neuro/muscular doctor sooner than July and that you get some answers. Sending lots of hugs your way! - Lori (Team Member)
1. kmm524al Member
 I am on a cancellation list. They have done a lot of labs and ruled out Lyme disease and auto immune type diseases. I do have a b12 def. but is controlled now. I’m ready for answers my feet are so numb but yet at the end of day working they hurt so bad burning and feels like hot needles going thru them
Janus Galante Moderator
Hi kmm524al, thank you for reaching out here, but I'm just sorry that your appointment is so far away time wise! Being put on a cancellation list would be a great idea. Following is a link that will hopefully provide talking points to bring up to your doctor. <a href='https://www.nationalmssociety.org/Symptoms-Diagnosis' target='_blank' rel='noopener noreferrer ugc'>https://www.nationalmssociety.org/Symptoms-Diagnosis</a> When you get on, there should be 6 other links for you to explore. You are definitely not crazy and I hope you get answers very soon! Janus
Kim Dolce Moderator & Contributor
<inline-mention user-id="4025294" username="kmm524al"/> You shouldn't have to wait 8 months to see a specialist while you're suffering like this. Urge your doctor to insist on an earlier appt. for you. Emphasize to what degree your symptoms are affecting your qualify of life. As a nurse you well know that a diagnosis isn't necessary to treat a patient's symptoms--and that there are medications that can help ease your leg spasms and neuropathic pain. Are you self-cathing to empty your bladder? If you haven't already, you might urge your doctor to discuss a treatment plan to help lessen your discomfort. I hope you will find comfort and some answers very soon! Please do keep us updated on your case. Thinking of you, Kim, moderator
mskaren Member
To Undiagnosed: My symptoms are the same as you described..and a few more . MRIs, nerve conduction & still can't get a confirmed DX. Has any doctor suggested a spinal tap? I am planning on having one this year- that should confirm my DX (waiting for my Covid vaccine first) Hope you able to get your DX confirmed!