Undiagnosed Nighmare
I started having right lower weakness and fasciculations in my calves. I had to stop working, my balance was really bad and I could not walk far at all. My symptoms all over the place cause I also got diagnosed with Hashimoto’s thyroid disease. I ended up having a seizure 1.5 years ago and was intubated for 2days and in the hospital for 2 weeks. I could only walk 250 steps when I got out. I feel like my muscles are not getting oxygen sometimes.I have double vision and blurry vision I have corrective lenses prisms in my glasses but I can’t wear them because it just feels like my muscles are being polled it’s a horrible sensation. I had CT done with and without contrast they did see a small syrinx but no lesions at that time. My neurologist also gave me an EMG test which the results were not revealing at all. They could not record my muscle weakness. Finally I go to a urologist who tested my bladder for strength and he said my bladder was really bad and there is a possibility at some point I’ll have to self catheterize. They filled me up with the fluid and I can’t push I can’t tell if I’m going to pee or poop and I had an accident in the doctors office when he told me to Pee. I also had a vaso vagal attack during my procedure. Doctor is concerned that I have MS.
List of symptoms this weak
Notes oct 22
Hashimoto’s thyroid disease
Muscle weakness
Muscle loss.down 35 lbs
Muscle fasciculations spasms and pulls
Muscle pain where they insert
Fog and memory loss
Loss of apatite sick feeling
Feet and toes white and blue and red
4 bad nights in a row
Sweats,bedding and pruning
Neck pain
back pain
Nerve pain shooting down legs
Face feels like the skin is tight or pressure
Blurry vision/ Double vision
Blood work is off
Muscle feels acidotic not getting oxygen
Hips feel compressing
Elbows get tight and numb below it
Back and neck have gotten worse
I have gotten back injections
Bad seizure a year and a half ago
Ouch,
, all of that sounds so awful.
I'm glad you have a proactive clinician that helping you move through this. Hearing the words EMM ESS coming out of your doctor's mouth is always freaky. I remember the crazy fear that ran through me as what I was potentially dealing with sunk in. Eventually you'll metabolize the fear; in the meantime, remember to keep putting one foot in front of the other. You're gonna get through this, just like you got through all of the other stuff life has thrown at you - you're obviously strong, you got this.
In the meantime, may I share a few things that helped me with my fasciculations and muscle stiffness? First, drink lots of Gatorade. With the weight loss I expect your electrolytes are way out of balance, plus it sounds like you could use the extra calories. I lost 70 lbs. over 18 months and the effect on your overall chemistry is quite significant. Second, take daily Epsom salt baths, and use twice as much Epsom salts as indicated. You will soak in a ton of extra magnesium and, if you react like I did, you will notice a near immediate difference in your muscle discomfort.
I truly hope self-catheterization is not in your future. If it's any consolation I roll around on my washroom floor every Wednesday and Sunday evening with a hose up my butt watching 30 Rock reruns on my iPad. A guy does what a guy gotta do.
Take a deep breath, Scott, and then another. Then go punch your couch as hard as you can three or four times. Then deep breathe again and think about how your gonna kick tomorrow's butt.
Be well, Scott.Thank you so much I feel so alone in this. I wish I could take a bath here but I can’t. I want to try it as soon as I can. My family doesn’t understand cause I look good for my age.
@scottjw65 I know you are not alone in how you feel, many community members have said the same things. It's very hard for people who don't have MS to understand what you're living with daily, especially if you don't "look" sick. Please know we are always here for you so if you ever need anything, don't hesitate to reach out. Sending you positive thoughts and hoping you get so much needed relief soon! -Beth (Team Member)
, I am sorry you are still in the grey area, without a firm diagnosis. I know it can be a very frustrating and disheartening time.
A lot of your symptoms do sound like MS symptoms, but there are a number of conditions that mimic MS and I bet your doctors have been working on ruling those out. You can read about those conditions here -- https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions.
I do hope you get a diagnosis (and treatment options!) very soon. And whether your diagnosis is MS or something else, please know we are thinking of you and we are happy to help in any way we can.
Best, Erin, MultipleSclerosis.net Team Member.
