Hello, I'm Kimberly, I go by Kimmie. I'm 38. I've been diagnosed with fibromyalgia, but I'm wondering if it could actually be MS. I read it's not an uncommon misdiagnosis. My dad had MS and died from complications of it in 2015.
Last December, I had a few weeks where I was falling a lot because my legs would get pins and needles out of the blue and crumple underneath me, including once when I was on the sidewalk, about to step into the crosswalk. I fell and got a nasty facial abrasion, as well as messed up my hand, because I put it out to stop the fall. I fell a total of 3 times, and I went to the ER the time I really banged myself up. They sent me to a neurologist, who did a neurological exam and decided I seem fine, aside from an abnormal gait. He was willing to do an MRI, though he didn't seem to think I really needed it, so I didn't get it done.
The pins and needle sensations got worse, and started in my hands and arms as well. Afraid of being labeled a hypochondriac, I just learned to deal with it. Then, I started having sensations of ice cold water running through my arms and legs at times. I also started having shooting pains from time to time. Fatigue some days was awful, but I attributed that to my fibro. Again, I ignored it all, thinking maybe it was all fibro.
About 3 weeks ago, I began wetting the bed and having accidents constantly. This lasted about 2 weeks, and it was awful. I had severe urgency, and didn't often make it to the bathroom in time.
Two weeks ago, my feet and ankles started swelling to extreme proportions and I became easily out of breath. I went to the nurse at the mental health clinic I go to, and she advised I go to urgent care. I did, and the doctor looked at the massive swelling in my feet and ankles, listened to my lungs, and sent me to the ER.
The ER didn't do much except check my heart and run many blood tests, but did suggest I follow up with my doctor. I did that, and was put on water pills, which took the swelling down and eventually away. The bed-wetting and accidents subsided as well.
For months, I had no sensation on my side right thigh. As with before, I ignored it. The last month or so, I lost sensation in my ledt pinky, ring finger and that side of my hand. I can use them, I just can't feel them. A few days ago, I lost sensation in my neck, back and shoulder on the right side. Hours ago, I realized there's a part of my stomach and toes on my left foot I can't feel as well.
Today, I spoke with a member of my doctor's team. I told her about the urine issues and the numb areas, as well as informed her about the falling incidents last year. I have been wondering if MS could be the culprit. I hadn't brought all this up in the visit, as I was so focused on the swelling. Knowing my dad died of MS, she put in a referral to have MRI scans of my head and cervical spine, which I'll be having on the 26th. I'll also get a full neurological exam on the 24th, from the doctor. They said depending on the results, I'll be referred to a neurologist.
I saw what MS did to my dad. He became blind, first in one eye and eventually, the other, and unable to walk because of the MS. He died from complications. I'm kinda concerned about ending up the same way... I'm younger than he was when he was diagnosed - he was in his late 40's/early 50's. At the same time, this could explain many things I've endured for a long time. I also have bowel issues that can't be explained, and chronic pain that has been attributed to fibro, that medicine hasn't helped. Not to mention the horrible fatigue I've suffered with for years...
Thanks for reading if you got this far! I'm not sure what I'm hoping for, maybe just to tell my story, ask if anyone had/has similar symptoms, and get support if I do have MS.
Hi Kimmie, there could be a lot of reasons for all of the symptoms you mention including ms. I have ms too along with ms and some other stuff so I know that everything has to be looked at before anything can be ruled out. My suggestion is to list the symptoms in the order of which you want to get rid of first second etc. for when you see the md. They, if the mri shows nothing definitive, will begin to address the symptoms in the order of what bothers you the most.
Your dad having ms is totally different, there are many disease modifying drugs to choose from now, a lot more is known, and symptom management is easier. You are in a completely different set of circumstances. The internet has given you the opportunity to become educated at a faster rate than before, you can search the nmss.org site for any symptom you want info about, and if it has a reference to ms, as well as how to treat it. Here on this site we have discussed everything about ms, On the discussion page at the right side are Topics outlined. You can also call the National MS Society and speak with a navigator about anything on your mind, and you can join an ms support group even without a diagnosis.
No matter what it is, stress and worry will only make it worse. Approach it like you have a problem to solve and nothing more and take really good care of yourself. maria
I am sorry to read about the symptoms you are experiencing. The symptoms
you mention can be symptoms of MS, but they could be due to something else as well. I am glad you are moving forward with testing that will help to determine what is causing your symptoms.
Here is a link to information and tips to help you make the most of your upcoming doctor appointments.
You may also want to view the following information from our website about Possible MS
and Diagnosing MS.
MS Navigator Stephanie