New Looking for advice; Lesion
 

Hello everyone;

My name is Melissa, I am a 27 yo female. I am in relatively good physical condition. I began seeking help after I started having extreme dizzy spells but have had frustrating symptoms for over 3 years now. I am not sure if I have MS, but do have similar symptoms including:

Numbness and serious tremors in arms and wrists on and off. The longest spell was 6 months (I lost a job because of this, I couldn't even get keys in my door)
Sudden Confusion
Depression
Fatigue (it is really hard to do anything at all some days)
dizzy/light headed spells
Memory issues (sometimes I forget who I am talking to on the phone for example, these happen while I am dizzy)
Sometimes while talking I can't come up with words during dizzy spells
Presyncope
One incident with slurred speech
Vision fading in and out like a camera trying to focus

I had an MRI and they found a single lesion in the corpus callosum, they dismissed this because it was only one and did not meet criteria for a demyelinating disease.

They also found a 2 cm cyst on the sphenoid wing, which they say is not likely responsible for the majority of my symptoms (may be causing my visual issues). I will be seeing a neuro-opthamologist for this.

I am being evaluated for arrhythmia and am wearing a heart monitor for two weeks.

I was wondering if I should push the issue with that lesion or if it is something that doesn't mean anything at all. They do not seem concerned about it, and did not even tell me; I read it in the report. I am not sure what I should do or ask for. Any help would be appreciated. Thank you!

Howdy Melissa, and sorry you are having to go through all of that. I am not a doctor, so my thoughts are worth every penny you are paying for them. But with that said, you should go and read about the McDonald Diagnostic Criteria for MS (https://en.wikipedia.org/wiki/McDonald_criteria).

I was in a situation similar to yours. I had one attack (sudden deafness in my left ear) that sent me to the doctor and eventually resulted in my getting an MRI. The MRI showed two lesions in the periventricular white matter.

When I went to the neurologist, she probably said something very similar to what you heard...that the lesions didn't meet the criteria for MS. I walked out thinking the same thing you apparently did...that my doctor had just told me that she didn't think I have MS. That is not what she was saying. She was saying that the lesions and a single clinical presentation of symptoms didn't meet the criteria (YET) to allow her to call it MS.

She proceeded to look for a variety of other things that could have explained the hearing loss, and didn't find anything else. She did ask me to keep getting annual MRIs and come back to see her once a year or sooner if I had more symptoms. 2 years later, my MRI showed more lesions and she immediately diagnosed me with MS, because I now met the criteria of more than 2 lesions disseminated over more than 6 months time.

I would ask the doctors if they are ignoring the possibility of that one lesion representing an initial presentation of MS...or if they are just trying to rule out other possibilities while they wait to see if more lesions or symptoms show up. It is very important to let your doctors know if any new symptoms show up, or if you have a recurrence of symptoms that had gone away for a while. Those things can be an important part of satisfying the McDonald Criteria if that is what they are trying to do.

If they are ignoring the lesion entirely, I would suggest getting another opinion from an MS specialist. MS can be present initially without distinct lesions on an MRI, and the strength and design of the MRI machine may also play a role in how well lesions were detected in the scan.

Most of all, become an advocate for your own interests. Read as much as you can and learn as much as you can about brain MRIs, about MS, and about other possibilities for what could be afflicting you, and then don't hesitate to ask questions of your doctors. One of the most effective questions any patient can ask their doctor is "Why do you think that?"

By making your doctor explain things to you instead of just tell you what their opinion is, you get a better feel for what they are trying to find and what they may have ruled out. Plus, we are all more careful and better prepared when we know that the people we are talking to will challenge us to explain and defend our opinions.

Good Luck and keep coming back to let us know how things are going!

Thank you very much! That is very helpful. :)

hi melissa, welcome to NT.

you're smart to get a copy of the report. i'd also get a copy of the disc in case you should see other drs. start a medical file on yourself.

there are guidelines for md's to dx (diagnose) MS. it's called the McDonald Criteria. check that out.

sometimes it can take time to dx MS. and, it's often a process of ruling out other illnesses that can mimic MS.

keep a sx (symptom) journal with the date and sx you experience. it can help the dr with your history.

i hope you will find out what's wrong. don't give up trying. you are your own best advocate.