Multiple Sclerosis (MS) Support Group

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Brain & Nervous System
/ Multiple Sclerosis (MS) Support Group

Just Popping in

strizzlow20
strizzlow20
Hello everyone. I haven't been here in a couple of years. I have symptoms consistent with MS, but no diagnosis. I'm starting to not think it is because I don't have one sided symptoms really anymore and we have 0 diagnostic evidence of MS. My neurologist said he has seen cases like mine where it takes years to diagnose but I just don't know. Several MRIs over the past 7 years, no lesions. I'm starting to have issues with my legs feeling numb/weak. My balance is jacked up but I manage and force myself to walk normal. I'm trying better shoes, helps a little but not much. I'm just wondering when I won't be able to force myself anymore, it's exhausting. I have a lot of coordination issues and muscle weakness in general. Being tired? Tired isn't the right word. Everyday basic tasks are exhausting. Exercise is limited to almost non-existent now. Just a slight elevation for Myasthenia Gravis is all I have but MG doesn't have sensory issues like I experience. My vision problems not consistent with MS or MG either except for occasional double vision or just weakness. I have visual distortion with health eyes. I avoided support groups for awhile to put the issues in the back of mind to limit the worry. Not much left I can do, it's crazy. Anyways, I read some of the stories of the holidays for some of the members here and I have found myself feeling somewhat similar. I'm not really able to play sports as well anymore. I make excuses to my friends why I can't participate. I don't tell my wife that my symptoms are getting worse because she's been through so much. My emotions aren't as controlled as much. I have very little patience and find myself angry a lot. I don't mean to be. A little nervous about the future and have lost a little hope which I know isn't a good thing. Bless everyone, enjoy your day the best you can.
strizzlow20
strizzlow20
I guess the reason for my post is I wish there was somewhere I fit in. I can't find anything without an answer to the issues.
marilyn4342
marilyn4342
You might not have a diagnosis yet ( some people here don't either) but that is why they come here. To seek like minded individuals. To seek guidance and support! Glad you re back! Don't make it so long next time! We are all here for you!
strizzlow20
strizzlow20
Thank you, I appreciate it
dxat59
dxat59
It took 40, yes 40 years to get my diagnosis of MS. Hang in there. If it really is MS, one day it will rear its ugly head and make an appearance that can't be denied.

Gentle hugs, Linda
basketballmom23
basketballmom23
My story is similar to yours. I finally found a neurologist who didn't blame everything I have (face and leg numbness, headaches, constant feeling of bugs on my feet, fatigue, bitchiness, fibromyalgia, trigeminal neuralgia, severe eye pain, etc) on depression. They would be depressed if they had these symptoms too.

I am awaiting yet another MRI tomorrow. The new doc gave me a diagnosis of Demylenating disease of the central nervous system, unspecified. I have lots of lesions on my brain and something big near the cerebellum that could be tangled vessels, a tumor or just inflammation.

Hang in there striz, check in when you need to. I am new to this board. I usually hang out in the fibromyalgia board. However, I am like you and tend not to tell my husband how I feel. He is in Aghanistan and just doesn't need to hear it, although he seems to know my "I'm fine" isn't so good.
strizzlow20
strizzlow20
Thank you and I'm really sorry for what you're going through. I've seen this and heard of this sooo many times. Most physicians tend to say it's psychological if they don't know or don't want to spend the time. I think a lot of them resent the internet being so widely available as well because there's a stigma that a lot of people try to self diagnose (which may be some of the time) but it hurts the people that are really having problems. I have a good Neurologist, we have a great relationship. He knows I'm not full of it. Problem is, MRIs don't show anything, neither has the nerve conductive studies, EMG, neuropathy biopsy, or Evoked Potentials. I must be honest though, my legs HAVE NEVER been this bad and just worsened a lot just in 4-6 weeks. What sucks is that I had a great insurance plan from 2013-2015 that I paid a high premium but 0 deductible for anything in network. Now I'm stuck with a plan that has a significant deductible. So on top of health issues, I have to weigh my financial options. My neuro said a couple years ago that if he were in Vegas 90 percent of his bet would be MS, maybe a few percentages for other types of Ataxia (I brought this up to him) and maybe a chip or two in the bucket for MG since that's the only positive test I've had. Very frustrating. Best of luck on your testing, I hope the best for you. I appreciate your husband's service as well.