I will try to keep this as short as possible. A little over a year ago I started to experience symptoms that were MS related. For the first month it was so bad I had to drop out of college. After about a month most of the symptoms went away except fatigue. This cycle of having new symptoms and them going away but some staying and varying in intensity has been going on for a little over a year. I experience about every symptom that is associated with MS, fatigue, vision problems, numbness and tingling in legs, arms, and hands, balance issues, spasticity, pain, memory and focus challenges, occasional speech problems, tremors, mild hearing loss, breathing trouble, and even lhermitte’s sign. I finally made t to the doctor a few weeks ago, just a regular general neurologist. He ordered me a brain MRI regular and with contrast. It came back normal and that is my problem. I am 90% positive the machine was a T1.5 which I’ve read is crap for finding lesions and diagnosing. I’m not sure why he didn’t order a spinal mri or lumbar puncture but I’ve not had those. I’ve had several things ruled out for diagnosis some being chrones, vitamin b deficiency, celiacs, syphllis, and HIV. I don’t know what to do next. I’d like to see a MS specialist and there is one in my area. I’m wondering if he would want another Brain MRI and order the other tests mentioned above. But I’m also wondering wether seeing an MS specialist is worth it. I believe it’s possible that I have MS, but the brain mri is confusing me. I know that none of you can diagnose me so I’m seeking advice and opinions on what my next move should be. In addition to that, has anyone been diagnosed with MS with a normal brain mri, or have experience getting more than one brain MRI, where one was normal and others showed lesions? Any thoughts and advice are welcome. Thank you!!
There is a small percentage of people - around 5% - that don't have lesions at the time of diagnosis; however if a person has subsequent MRIs and lesions are still not present it is important to question the MS diagnosis. You can read more about MRIs at this link.
If you don't believe that your doctor was thorough in his attempt to determine what is causing your symptoms, you can certainly get a second opinion. You can search for Partners in MS Care on our website.
Lastly, I wanted to include some information that I hope will be helpful:
Choosing the Right Healthcare Provider
MS Navigator Stephanie
I can give you my brief history with neurologist. 13 I’ve seen. And what a long road. Here’s what I highly recommend. Keep a journal of symptoms, Time frame such as how long they last, the temperatures such as extreme heat or cold. Activities...such as you ran 5 miles. Take notice of fatigue, when it started, eg., mine happens after a shower. I need to sleep for 5 hrs afterwards. Any trauma that happened mentally or physically. Such as a surgical procedure. Eg., my symptoms all started after a gallbladder surgery. Too be honest I’m really not sure if this has anything to do with MS other from what was told to me.
Reason for this journal as I explain will help tremendously. I have forgotten about my gallbladder surgery trying too figure out when everything started for me. I was told by a neurologist that keeping a journal of my symptoms and duration of episodes plus weather conditions helped greatly upon diagnosis. I now keep one after I finally did get my diagnosis for 2 reasons.
1. Memory issues. I’m forgetting a lot. When they ask about how my symptoms start, at 1st I had no idea. I sat there speechless bc I couldn’t remember something so simple as remembering I was having issues with humidity outside. Then a few deaths I endured which caused so much stress. Which in-term causes episodes.
2. I’m just now learning about MS after being diagnosed in 2016. I was just grateful after a 10 year long battle trying too get diagnosed, I was finally relieved I was not going crazy as some thought. My body lost all muscle mass. Now that I’ve had 3 relapse’s this past year, it was this group that made me realize that I need too start educating myself. After I was finally put on the MS medication’s I noticed a huge difference. This is all documented (thank god)! Then the 2nd medication added, also documented. Was also a huge improvement. Doctors need to know how these medications benefit you or if they do not.
Also keeping this journal of my activities for the day, weather conditions is helping me understand more about how I need to understand why I’m having these relapses and things I need to avoid.
Eg., I no longer can feel the shower temperature’s, I also cannot stand a hot shower either. I cannot remember when this started bothering me. Then the humidity we had this year, I honestly had no idea other than using a cool cloth on me, how bad it effects us. Such as getting in a cool bath, cooling ourselves down. I didn’t know how to do this or how bad it effects us until I started reading things here.
So this journal will definitely come in handy.
Now, I was always told my brain lesions were unspecified. Not consistently seen in MS patients. I had every hallmark symptoms but not the eye thing.
Optic neuritis I believe is the word plus a clean spinal tap.
2 yrs ago I got another brain lesions on brain and now spine which are considered MS. Once we started the MS meds without me knowing what they were for, I showed a huge improvement. I was given diagnosis of slipped disc which btw my back is fine, too FM, too Transverse mylitius. It did however start as TM. They believe that was the start of MS. Oh the list goes on.
When I had my 1st spinal tap done the white blood cell count was not too be found. The doctor who took this test knew I had MS but did nothing. He wanted me to participate in studies at our hospital which I refused. It was years later another doctor told me what he had said and didn’t understand why he never diagnosed me. He turned out too be a good friend of mine, this pain management doctor. And shocked to see how much I deteriorated over the years. That’s behind me now but I was mad. I’m just grateful I never did his studies.
When I met my current neurologist we started fresh. He did ask about how, when things started. If I didn’t have those journal’s I would have not remembered a lot of key things. Such as the electric shocks I keep getting this, literally cause me to fall. Or the winter my legs started shaking walking in -5 degrees weather that caused many more falls. Also the spastic reflexes started out as a 2+, to now 5.
Those episodes and journals helped a great deal to answer a lot of questions and concerns I was having which in term he was easily able to explain why. And helps with treatments.
Also if you do get diagnosed and have a relapse, I just started keeping notes of how each 5 day course of the steroids helped me, before during and after. As well as the MS meds.
I would suggest getting a second opinion. Did he give you a reason to what he thinks is going on? I honestly forgot.
If you do decide to keep a journal....I write down what I did that day, then I use sticky notes for the medications I took, weather and if I had an episode. For easy reference. The date, yr and day. I truly hope this helps and I hope this is NOT MS. But if it is, you will find A LOT of caring people and support here. They are helping me tremendously. Let me know. Be persistent until you get an answer to what is going on.
The damage that I sub stained can never be reversed. Good luck and you have a friend here. 🙋♀️😊
- Hi, diagnosing MS is very difficult and doctors will tell you all sorts of things of what they think it is. I went to different doctors for several decades and none of them ever suspected MS or tested for it or more importantly cared. I had to dump my PCP and neurologist once I went for a second opinion of my neurologist. I wish I had gone for a second opinion so much earlier. When my new neurologist saw me walk and even the way I sat and held my head, he sent me off to get a MRI as soon as I could of my brain and spine. I was in shock when he told me I had MS and I saw the lesions all over my brain, neck, and spine. I called my last remaining aunt to ask if we had MS in the family. Yes, we did and she had a daughter in a wheelchair. My mother had taken that MS secret to her grave. Along with all my other rants, I rant at her quite often. Whatever you find out, we'll be here to provide you with support and comfort.