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Help: 10 years without a diagnose

I've been having flare ups since 2009. When it started I felt very tired and then it progressed to not being able to walk and having excessive pain in my back and legs. The first time in lasted 5 months. It progressed to the point of not being able to stand up. I was hospitalized. Different doctors gave their feedback and it all ended with a rheumatologist saying I had fibromyalgia. The only thing that would work on me was Gabapentin (Neurontin). After 5 months it all went away. In 2010 it came back for 2 weeks. My left leg would get stiff and I would limp. I was very tired constantly. Then it went away. In 2013 again for 2 weeks of limping, and pain. This time I had a bit of bladder incontinence and other symptoms as blood in my stool. Each time I had a flare up I would go to the doctor. That last time the new doctor said it wasn't fibromyalgia, that all my symptoms pointed to a relapse in MS. But since that symptoms were gone we needed to wait for another relapse to do an MRI. In 2017 I had the worst relapse. It lasted 4 months, I was bed ridden. This time it was my right leg and lower back. Since I moved I had to start all over again and visited a new doctor. She referred me to several MRIs, CT scans, blood tests, etc. In the end she said she couldnt find anything. I was desperate. I began doing PT to help me walk again. The doctor referred me to a neurologist and the neurologist had me in her office for 5 minutes and after seeing the MRI and listening to me she recommended a psychiatrist saying that it was all in my head and it was stressed related. I was devastated. After so many years of this happening I was being pushed away with that diagnosis. After 2 more months it went away. Now, its 2019. It started 2 weeks ago. I cant move my right leg, it feels numb, my left leg and hip are in pain, it started with me being very tired and it has progressed. I have weird twitches in my right leg. My left eye doesnt stop twitching. I have bladder incontinence. I have problems looking for words when I speak. I'm currently walking with a cane and have a lot of difficulty getting up and walking. I feel as if there's a delay between my legs moving and me thinking that they should move. My right foot gets extremely cold, like ice cold, while me left foot is warm. These are some symptoms I already had before but now it has become worse. We are going to start the whole process again. I've been going to bed sobbing every night. I take gabapentin to sleep but I still have pain, like sore muscle pain when I sleep. I just need to be correctly diagnosed. I dont know if I have MS, but it looks like it. Please help me.

  1. Lycr, I am so sorry that you have had such a difficult time finding a diagnosis all these years. Knowing that something is wrong but not knowing exactly what and how to best address the problem is like constant drilling going on inside your head digging deeper trying to find the answer and not striking gold. I hope that soon you will find a healthcare provider who will help you find that elusive answer. Though we don't give medical advice here because each individual situation is so unique and can be influenced by so many different factors, we do have a lot of information about multiple sclerosis available and a wonderful community of followers who are available to offer you support in a number of ways. Let's start with this article on diagnosis MS based on a combination of MRI and lumbar puncture results. and this article explains how those tests are used to make the diagnosis. I hope these help. Come back for more if you have additional questions.
    Donna Steigleder, Moderator

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