I am so frustrated while waiting for a diagnosis. I know I have MS, I have all of the symptoms and truly feel it. This has been going on for over 10 years. When I was diagnosed with fibromyalgia I just accepted it and lived my life. Now 10 years later and 100 more complaints, I am patiently waiting through tests and Neurologist visits to get an answer. I had my MRI two days ago, still waiting for the results, I have an EMG scheduled and all of my blood work came back normal. The Dr. gave me Gralise for the pain, which surprisingly dulled it somewhat.
Frustration while I wait for answers, fear that I won’t get any, this is what is constantly on my mind these days and hurting my head. Has anyone else been through this or just knew they had MS but couldn’t get a diagnosis?
I understand completely where you are coming from, I think it is harder waiting for the answers then it is to hear the diagnosis.
I am in the same situation, inam waiting for my mri which is in a month and a half (that is the soonest they can do it) and then I'm waiting for an appointment with a neurologist. Who knows how long that will take.
I myself am pretty sure that I have MS, but until the tests are done and come back I'm stuck waiting. I was diagnosed 3 years ago with Fibromyalgia as well but I am almost 100% sure that started about 10 years before that just my Dr wasn't listening to me.
It took me 10 years and lots of complaining to my Dr, and me telling him that I thought I had fobro to get the diagnosis. Now I'm worrying that the tests are going to come back and them tell me it is clear. I mean don't get me wrong, I would rather it come back clear and all my symptoms go away, but I know in my heart and body that something is not right.
I know it's hard, but just know your not alone in how you are feeling. I do hope you get answers soon and they get you on the right path.
I feel the same way, if my MRI comes back clear I will be so confused. Like you said, that would be a good thing, but is not having answers good? It is a crazy, painful ride that we are on but knowing that there are others that truly “feel your pain” really does help in some odd way.
I hope you get the anwsers thay you need. Thank you for taking the time to read my post and reply.
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MS can be frustrating for a lot of people. There really isn't one test that they can preform like a strep test to determine you have MS. That makes it hard to diagnose unfortunately. I was diagnosed pretty fast but still the doctor screwed up my treatment. Once I got to an MS specialist it was causing havoc in my spinal cord.
The part that is similar is I knew the medication I was on wasn't working but I was the only one that believed that. Everyone else said it was stress and depression. I will tell you that you have to be an advocate meaning I would light a fire under that docs behind and call him/her until you get the information you need. You can always get a second opinion if your not happy with that doc.
Very sorry to hear of your ordeal, thank you for sharing your story on here. I luckily was diagnosed quickly. I had my first really noticeable relapse in Mid may of last year. I awoke with sudden bad speech slurring, also the right side of my face went stiff and I couldn't smile. The stiffness in my face seemed to fade and go away in two weeks or so but the speech slurring dragged on for like a month. I don't like going to the doctor but I had an appointment in early June anyways for a blood pressure check so when I went in for that I told my regular doctor all about my speech issues and he said well I'm gonna order you a brain MRI. I explained how my mom (a retired nurse) worried I'd had a stroke. My mom pushed me to move the appointment up but stubborn as I am, I just went in early June as it was scheduled. So the MRI of my brain was ordered and I also was told to make an appointment with a neurologist. I started to suspect MS after reading about it during the time I was having the speech slurring episode in mid May. I wasn't sure what it was but MS seemed to fit. Then I get to the neurologist and he immediatly ordered blood work after quite a few MS type lesions were revealed to him in my brain MRI results. The bloodwork ruled out Lymes for example. Next he ordered me a C-Spine MRI. The cervical spine MRI results showed no lesions but through those results I eventually discovered I have cervical spinal stenosis (which was confirmed in mid August of last year when I saw a neurosurgeon who also wrote me a script for physical therapy). Next the neurologist ordered me to have a spinal tap which I had on July 18th of last year. By July 25th of last year following results of the spinal tap (which revealed lots of MS related protein 'o' bands), I received my offical MS diagnosis. I went to that appointment and I was 99.9% sure it was gonna be the one I would be diagnosed but nothing can prepare you for that moment. I remember calling my mom from the neuro's office in tears. My mom was a bit surprised you can say about the news, I was not as I already knew in my gut, I had it before he told me. Apparently I'd had MS for quite some time he suspects do to the sheer amount lesions and 'o' bands. I really hope you do get the diagnosis if you do indeed have MS, I couldn't imagine if I was in your shoes and knew I had it but was told I didn't. It's beyond frusterating, I have read of others who were in your boat. I now take Tecfidera for my MS twice a day, it was the first medication my neuro recommended. I also see a mental health therapist for depression/ anxiety/ ADHD and was told I may be bipolar. I'm also on a wait list to see a psychiatrist incase it's decided medication is needed for my mental health issues. Anyways I truly wish you all the best in your diagnosis journey, for some it can be quite a long one unfortunetly but don't give up hope, stay strong.
Life is truly known only to those who suffer, lose, endure adversity and stumble from defeat to defeat. - Anais Nin
Thank you for sharing your story, it does help to know that you aren’t alone in this. I hope the best for you always.
It is always good to get a second opinion.
Yes, I plan to. I called the Neurologist’s office yesterday for an update on my MRI. The receptionist said if there was a problem he would have called you. He will go over the results with you next month when you come in for your EMG. To say I am upset is an understatement. I know he is busy but is a call too much to ask for, regardless of the results? I feel like taking my reports and going to a new Neurologist. The way I feel, I really don’t need anyone to give me the diagnosis, I know my body.