Where to Go From Here...

By stroirk

2 min read

Well I have a long story as do many of you. I’ve been reading stories for a while now but I feel it’s time to tell mine just to get it off my chest.

My symptoms started 20 years ago

First off, I am not diagnosed although I know in my heart, gut, and mind what I am going through is certainly MS. It all started exactly 20 years ago with numbness and tingling in my left foot. I was in the military and was scared for many reasons. What’s going on and will I be able to continue to serve our country or be forced out medically? I saw a neurologist back then who basically told me not to come back until I couldn’t lift my arm or leg or something. I also saw a psych who said my foot wasn’t numb. Ok so that was fun ?

I feel like I've moved to progressive

Fast forward to now: 20 years later, several different minor symptoms compared to a lot of people I have read about, and thankfully a retirement from the military, here I am still trying to figure out what is going on as symptoms have progressed and seem to be more coming than going with each one. Call me crazy but I feel like I’ve moved into progressive without even getting diagnosed after 20 years of this. I've found a decent neuro, but after a spinal tap, tons of blood work, and 2 MRIs of neck, spine, and head, he’s convinced it’s not MS.

So frustrated

Yes, I am frustrated. First, because everything I read says to get treatment ASAP and if that had happened where would I be today? Can’t focus on that I know. Also I am so frustrated with no diagnosis as this thing keeps getting the best of me. As they say ‘more bad days than good days now’. I’ve dealt with depression, lack of motivation, exhaustion, heavy feeling legs, slight balance problems and the worst is this shakiness internally that just makes me feel awful. While still mobile, I’m still fearful of the future ?

Thanks for taking the time to read my story and any suggestions would be appreciated!

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Lisa Emrich Moderator & Contributor
Hi stroirk, Thank you for sharing your story. I'm sorry that you've been dealing with this for so many decades. Not having answers (so that you can find solutions) is frustrating and frightening. All of the "what ifs" can get to you. But a misdiagnosis and treatment of MS can be almost as detrimental to no treatment for MS at all. Neurologists can be cautious to try to make the right call if the evidence is not strong to support an MS diagnosis. On the other hand, not everybody fits the typical results of every test used to diagnose MS so it's very important to see a neurologist who specializes in the disease. In addition to the tests you mention, I also underwent evoked potential testings which can measure how quickly nerve signals travel through the body. Sometimes this can demonstrate damage that might not be picked up on MRI. Please know that you are not alone and I am glad that you've shared your story. Thinking of you. --Lisa, moderator
1. stroirk Member
 Lisa thank you for the kind reply. I’ve gathered all my doctor’s notes and test results and am going to try and go to the Mayo Clinic in Jax, Florida to see if I can get answers.
musicang Member
Have you looked at Parkinson’s as a possibility? I know the thought is scary, but many of the symptoms can be similar and this internal shakiness you speak of sounds similar to Parkinson’s. My mother actually has both MS and Parkinson’s, not a good combo.
1. stroirk Member
 I actually had that thought. My mother had PD as well but this shakiness comes and goes. It started years ago and would come fo a short period of time and not come back for months. As of today I haven’t felt it in 6 days . I can honestly say I’m pretty sure it’s not PD but thank you for the reply.
marshay Member
Blessings to you and I Pray that you have gotten much better news and help from a better neurologist. With your symptoms sounding so much like ours,you need some one to help you even after all these years. Prayers for you
f5hwo4 Member
It took me nearly 30 years to get diagnosed, I was diagnosed at the age of 55. I had two aunts that had MS and the doctor dismissed it and said it wasn't genetic. I couldn't get any doctors to listen to me, they treated me like a hypochondriac housewife. I had numb hands, MS hugs and once my legs quit working before I was diagnosed. My GP finally sent me to a neuro when my arm hurt so bad that nothing could touch my skin. He thought I had pinched a nerve in my elbow. The neuro looked at my past problems and my family history and tested me for MS. I didn't have a pinched elbow and I tried another doctor for my GP. Potter
yoshitail9 Member
Stroirk Sorry to hear of your frustration. Get a Neuro who specializes in MS. As an aside a recent article, supported by a study, is stating that 20% of individuals who were diagnosed and TREATED for MS were done so in ERROR. Such a cost to those people mentally, physically and financially. okThat is very disturbing.
marybel Member
Sorry, this is going to be long, but I fully understand your frustration. Almost a year ago I had an episode that put me in the hospital for three days. Right eye was fixed, left eye was roaming, left side weakness and extreme dizziness. At first they thought I had a stroke. It was ruled out but no diagnosis. The doctors at the hospital suspected MS and had me follow up with a neurologist. I had MRIs, cat scan, blood work, spinal tap which were all negative. He diagnosed me as a depressed insomniac with migraines. I've never had a migraine in my life. The second neuro ran all the exams again and my CSF pressure was high and indicated abnormalities. But no MS. He point blank told me that if my episode had not been documented he would not believe my symptoms. He already also said that what I have is 'bizarre'. I've had symptoms for years that have not been diagnosable which now I'm sure was MS. It will be a year on May 4th since the episode. I have not been the same neurologically nor physically. It's so frustrating being pigeon holed into a stereotype. Thank you for sharing your story. It helps me to know that I'm not the only one with this struggle.
Therry Neilsen Moderator & Contributor
Stroirk, I am so sorry you've been trapped in the hell of the diagnostic process for so long! I can feel your frustration and a certain amount of anger too. Don't beat yourself up for not being on treatment, though. Not that I'm comparing our circumstances, but I didn't start on treatment until I was twenty years into my journey with MS, and had already received a diagnosis of secondary progressive MS. Even with the existing damage of twenty years with the disease, the treatment (Copaxone)was able to make a big difference, so keep going after the diagnosis, and no matter how late you start, you just never know what changes the treatment can make in your situation. Take another deep breath or two or three, and keep after your neurologist. You know what yesterday was like, but none of us know what tomorrow will bring, and I promise to pray for you and with you that you achieve diagnosis and treatment. Here's my prayer for you: May Stroirk be at peace. May Stroirk's heart remain open. May Stroirk awaken to the radiance of his true nature. May Stroirk be healed. May Stroirk be a source of healing for all beings.
Krista Member
I'm in the same boat. I have been out on disability for 4 months and am going back Jan 3. Not sure how I am going to do it but I'm a single mom. And so tired of doctors telling us that we are depressed or anxious when our bodies are failing us. All we want is help, not a million dollars. Would be nice if they listened to patients. 
1. Lori Foster Member
 Hi <inline-mention username="Krista" user-id="4254725"/>. Do you feel physically ready to go back? I wish you had more choices. Please know we are here for you if you need support or a place to vent as you make your way back to work. Thinking of you. - Lori (Team Member)
2. Krista Member
 <inline-mention username="Lori Foster" user-id="4035613"/> thank you Lori. I appreciate that. I'm a dental hygienist. It's a lot of pulling and tugging and running back and forth. I'm going to give it a try and see. My body doesn't care to cooperate!