Trying To Find a Diagnosis
Hi. In late May I began to have breathing issues with shortness of breath that lasted until the first week of July. By July 7th I started to have a hard time walking. My legs felt wobbly and weak. Then fatigue like I’ve never experienced set in. I started to experience dizziness and aches and throbbing all over my body (mostly later in the day) After about 2 weeks my insides felt a sort of pressure and shaking my weakness got worse in my legs. I started to hang on to the walls and objects to hold myself up. By the last week of July the pain was awful at night. My legs felt like I was dragging weights when I tried to walk, very heavy. I noticed my right arm and leg weaker than my left. All the while I would get pins and needles in arms and legs and sensations in my legs of having goosebumps when I didn’t have any.
I have seen every specialist and had so much blood wok and everything is normal. I went to the rheumatologist told her I felt weak in my legs and unstable on my feet and was in pain and she told me to exercise. I saw a neurologist who put me on Cymbalta and Lyrica and it has helped (but seemed to affected my vision as it goes in and out now). but just recently I am having some pain again. I had nerve tests and mri of my brain and entire back. The results were normal but I have some degenerative issues in my neck.
I did upload my mri for a second opinion to docpanel and he found 3 “punctuate foci of signal abnormality in bilateral frontal white matter”. My GP doesn’t think this is of any significance. Does anyone think think this is something I should have a neurologist look at? (Mine has no sense of urgency and I’ve been waiting over a month since my mri to see her meanwhile out on disability) This past week I have just started walking more normally but my pain is coming back. I still feel strange sensations in my legs. I feel as if doctors can’t figure it out and are giving up on me. Can this be MS?
, I am so sorry you are dealing with these issues and still searching for a diagnosis. Unfortunately, it can take some time and a lot of pushing on your part to get a proper diagnosis. Generally, neurologists will look for two areas of the central nervous system to have lesion activity when looking at an MRI.
But, an MRI is only part of the diagnostic process. You can read more about the tools used to diagnose MS here -- https://multiplesclerosis.net/diagnosis/tools-your-doctor-will-use-to-make-a-diagnosis. Also, you mentioned you have had a lot of bloodwork. Did anything of significance show up in the lab results?
There are a number of conditions that have similar symptoms to MS and you will want to have your doctor rule those out as you are looking for answers -- https://multiplesclerosis.net/diagnosis/ruling-out-other-health-conditions .
I would definitely discuss the side effects you are experiencing from the medications as well, if you haven't already done so. Did your neurologist have a conversation with you about why he/she chose those specific medications and did he/she give you a diagnosis? I know in this day and age it can be hard to have an in-depth conversation with your doctor, but it may really help answer some of your questions and also help you decide which medications are right for you.
I do hope your symptoms begin to level off and that you are able to get some clear answers very soon!
Best, Erin, MultipleSclerosis.net Team Member.thank you Erin. All my bloodwork from both the rheumatologist and neurologist was normal. I discussed vision side effects she was not concerned. It’s very hard to get any kind of answer out of her other than “ I don’t know”. She told me she put me on those meds for nerve pain. I did go for a 2nd opinion and the neurologist within 2 minutes told me my bloodwork and scans were normal (which was why I had the mri evaluated again) and said I needed a psychiatrist and nothing is wrong with me. It’s a defeating feeling when your sanity is being questioned. The rheumatologist said let’s just call it fibromyalgia because that’s what we call unexplained pain. 
Hi
. I am glad the rheumatologist is at least willing to give you a diagnosis that will help ensure that your treatment is covered, but I wish you had better answers. Please don't give up on finding answers and don't limit your thinking to one particular diagnosis, such as MS. I have a niece who went to 30 different specialists looking for answers as her body deteriorated and her nerve pain increased to the point where it was beyond debilitating. After two years, she was skeletal and wheelchair bound and only in her late 20s. We thought we were going to lose her. It was her gynecologist who finally asked whether she had ever been tested for Celiac's disease. He saved her life. Her first pregnancy had probably triggered the Celiac gene. It took several years, but she is now fully recovered and pregnant with her second child. Had she given up on doctors, she would not be with us right now. It can be mentally and physically exhausting to advocate for yourself, but it has to be done. Thinking of you! - Lori (Team Member)
Thank you Lori. I’m glad to hear a good ending to your niece’s story.
