Likely MS but just weird
Hello,
I have been having problems off and on for years and I think I have MS. I had a really big flare up of whatever is going on and about a month ago I went to the ER where they did a bunch of tests. My symptoms were vertigo, vision blurry, brain fog/confusion. I was unsteady and weak. It went on for days.
My MRI showed "T2/flare hyperintensity within the subcortical and periventricular white matter some of which are perpendicular to the calloseptal interface" and they diagnosed me with demyelinating disease.
I went to a neurologist and because of my brain fog I spent a long time writing all my relevant history down (I am new to this state and have no medical records here). The nurse didn't want to discuss what I typed up and wanted me to tell her everything on the spot. I got very upset and anxious because I was having so much trouble recalling things and getting words out. The doctor seemed nice and he showed me my scans. I believe there was about 8 white spots most small and one looked like it was almost 1/4 of my brain on that specific slice. He said it's possible it is MS and wants to do a spinal tap and a OCT and VEP test.
So my OCT and VEP were today. The VEP was normal but my OCT says "sharp disc margins.thinning of the retinal nerve fiber is suggested"
I was surprised the VEP was normal (is it always abnormal with MS?). I am currently feeling about 98% normal today though.
Does this mean it's something else or might still be MS? I'm so confused and frustrated with how I feel. I just want a diagnosis and treatment because I'm 38 and I am the "primary breadwinner" for my family (my husband works but makes less than me. We have a 4 year old and I am also supporting my mother and sister) I can't afford to be out of work and be feeling so terrible.
I can type up all my past history if it's helpful to anyone who might have thoughts on what is going on.... I just don't want to keep feeling like I'm crazy.
Hi
, I am so sorry to hear what you've been going through. A VEP test isn't always abnormal when you have MS. What has he said since those tests? A spinal tap can point in the direction of MS but could also mean it's something else, nothing viewed there will specifically say it's MS. Unfortunately, this process can be quite common to diagnose MS, basically, a neurologist will take a look at numerous tests and try to make a diagnosis from there. There just isn't one test that says "this is MS". Your story is, unfortunately, a common one as many of us have struggled to get a diagnosis. From what you've said, it could be MS or it could be something else. I recommend a couple of things, for one, make sure you take some with you to the appointments, someone who can advocate for you and who knows what you've been going through (because of brain fog, I still do this, even for routine visits). Second, while it's not pleasant, do your best to see another neurologist for another opinion (preferably one that specializes in MS). You've already had many of the tests done, so it should really be a case of them looking at those and hearing your story and seeing what they think. I cannot stress enough, how important it is to see more than one specialist when trying to get a diagnosis of MS. Not all doctors are equal and there are many that are not up to the latest when it comes to MS. Best of luck to you and please let us know how you are doing and what happens. This whole process can take a frustratingly long amount of time but we are here for you. 
Hi
. Devin gave you some great advice. In case you have trouble finding an MS specialist, I wanted to share with you this tool from the National MS Society: https://www.nationalmssociety.org/Resources-Support/Find-Doctors-Resources. The tool can help you find a specialist in your area. If you do get an MS diagnosis, please know that MS might not prevent you from continuing to pursue your career. Every MS journey is different, so it's impossible to know where a diagnosis might take you. Many people with MS have successful careers and retire at the usual time. That could be you. I hope you get some answers soon. Keep us posted if you feel comfortable doing so. Thinking of you. - Lori (Team Member)
Thank you both for your replies. The MRIs were done a few weeks ago and the doctor said it could be MS but needs the other tests to help him confirm. I had the other 2 tests yesterday so I haven't talked to him about the results (but the results were posted on my account). The spinal tap is next week.
My husband will be with me for the spinal tap but I don't have anyone reliable to go with me and help me with my history. My husband is not good for that sort of thing. Sadly that's why I try to write everything down. I am used to being the one that everyone relies on.
I went on the link for the doctors. The one I am seeing was the first one to come up in my area, so that's a good sign. The other doctor is in the same practice and there really isnt anything else close by. Hopefully this doctor will be good for me!
I'm is driving me crazy how it's been a month and I'm still not 100%. I am having much more mild problems now but I'm still having trouble at work (I am a Respiratory therapist and it is just so hard for me on days I am working at the hospital right now) thankfully I am only in the hospital a few days and I am in a clinic the other days.
I've had problems off and on for about 18 years. In the past I thought it was because of sleep apnea, weight, diabetes, poor vision... I had laser vision surgery and I had bariatric surgery. I corrected everything I can (no longer have any of those problems) and now I'm worse than ever. It's really frustrating to me. I hope I get answers soon.
Thanks for letting me vent.Hi
. That's what we're here for -- to offer support and to give you a safe place to vent among people who get it. It sounds like your doctor is doing all the right things. The spinal tap results will likely be the deciding factor. Waiting is so very hard, but there is, unfortunately, no way a round it. I wish your husband were better able to help with your history, but I am glad he is so supportive and is coming with you. Can you write out your history and bring it with you? It would be good to have that at the ready whenever you need it. Fingers crossed for you. The best thing you can do now is to keep busy and distracted. Gentle hugs. - Lori (Team Member)
I had the spinal tap today. My mother drove me. My husband and I have been fighting a lot so I didn't want the added stress of him driving me. He didn't even ask me how I felt or how it went until hours later even though he was home. 🙁 oh but he did ask for me to grab him Starbucks on my way home.
My chart online says that the csf cell count with differential and the glucose tests were normal. High protein in csf and the test for o.bands is not back yet. The blood work isnt back yet either. My follow up is in 3 weeks. Just trying to wait it out that long.Three more weeks! Ugh. That can seem like forever. I hope you can keep super busy in the meantime. I wish your husband was more supportive right now. Is he normally this way? Some people can't handle the emotions of others when they are facing something potentially difficult. So they shut them out, usually by minimizing the issue or acting irritated. Could he be one of those people? If so, it might be helpful is someone else is your main sounding board for now. He might need time to privately process all that is happening. Sending loads of gentle hugs your way. - Lori (Team Member)
