It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Multiple Sclerosis Message Board


Multiple Sclerosis Board Index


I was referred to a neurologist about 2 months ago. I have had pre and post contrast brain and c-spine MRI's. On all reports the radiologist put one diagnosis as MS. Last Monday my neurologist spent a lot of time explaining the MRI results, showing me several different lesions and white spots. On the right side of my brain he explained that this is exactly what a MS lesion looks like. The other large lesion he stated was due to lack of oxygen/blood getting to that part of my brain. That is a different issue that worries me. He spent most of the time on the "MS lesion" Going back and forth about an "official" diagnosis. He is trying to help symptoms with medication. He did mention that with an official diagnosis, I need to remember there is no cure....but, expensive medications with horrific side effects. He discussed doing two other test. The optic nerve....he doesn't feel like it is 100% accurate and a spinal tap....which the results can come back normal when a person does have MS which would lead us right back to where we are. I could tell he was frustrated and doesn't want to leave me in limbo. Symptoms are continuing to get worse.....especially related to legs, balance, numbness, etc. I went out of town to a conference and was stranded a couple of extra days because my legs where numb and I didn't feel it was safe for me to drive back.
He did write a script for a walker to hopefully just use around the house and a bath stool. If things continue to get worse he will repeat MRI's in a few months. He will definitely repeat in a year.

I guess I am wondering:
1- is it common not have a definitive diagnosis and be told that MS can't be ruled out?
2- Should I push for a diagnosis? Whatever that diagnosis may be?
3- Any suggestions on coping or decreasing the symptoms? (leg numbness, burning, weakness, stiffness, trouble walking, upper body numbness, trouble with balance, blurred vision, etc....I guess I really want to do what I need to for my legs to work!)
4- I have read a lot about the physical aspects. I guess seeing a large lesion in the front of my brain makes me question.....will this effect my cognitive abilities?

Sorry this was so long! If you read all of this thank you! I appreciate and welcome any feedback and/or suggestions.
Michele,

Let not your heart be troubled. This is my 38th year of MS, and the good days still outnumber the bad.

If the doctor is sitting on the fence waiting for the VEP or Optic Nerve or LP, I would ask them to follow the Revised McDonald Criteria. I have never had an abnormal LP. If your LP is normal, this should only rule out MS mimicries and cannot confirm or deny MS. Is your neuro an MS Specialist? You may need to literally push the doctor off the fence.

As to your questions:


1- is it common not have a definitive diagnosis and be told that MS can't be ruled out?-- If your doctor has followed the Revised McDonald Criteria and the known Mimicries have been ruled out and you meet the criteria of the Revised McDonald Criteria, there should be no reason you cannot be diagnosed. IF you were to only have a single lesion, then the doctor could not diagnose you and you would have to wait.

2- Should I push for a diagnosis? Whatever that diagnosis may be?
It depends on your doctor. You have to be ready to step in and push some doctors. If they are afraid to deliver bad news, make sure they know that you are ready for whatever news they have.

3- Any suggestions on coping or decreasing the symptoms? (leg numbness, burning, weakness, stiffness, trouble walking, upper body numbness, trouble with balance, blurred vision, etc....I guess I really want to do what I need to for my legs to work!)

Decreasing symptoms is really difficult because you are unique. Stretching and continuing to move are two things to remember. Moving about (low impact exercise) needs to be done in moderation. I have found that learning what my avoidable triggers are allows me to better control my MS. If you keep a journal of symptoms, with observations of your objective data, you should be able to figure things out. There are some foods you may need to limit.


4- I have read a lot about the physical aspects. I guess seeing a large lesion in the front of my brain makes me question.....will this effect my cognitive abilities?

I have cognitive problems, but I do not chalk it up to lesions, lesion locations, or lesion numbers. I just see it as my MS. There are triggers which will affect my cognition. Slurring and stuttering are harbingers for me. If I intervene and avoid the trigger or get the mental rest, I get better more quickly than if I choose to keep pushing myself. As to your large lesion. Like with most lesions, it is difficult to know the cause or even how long you have had it. Until we have a baseline of MRI images, lesion onset is impossible to truly know. Your lesion could have presented during childhood. Some lesions can be circumvented too as our body will sometimes "re-wire" the neural pathways.

MS is not fatal, only chronic. :angel:
My MRI's showed two large lesions. They looked very different and the doctor explained one was typically due to lack of oxygen/blood flow and the other larger lesion was what he referred to as a "MS" lesion. The way he explained it made sense at the time. I was on overload and don't remember the exact explanation. How do I find a MS specialist. The neurologist I see is general but seems very knowledgeable. I live in South Louisiana. There may be 2 or 3 neurologist in the area, all general. Is there a website with a listing of neurologist who specialize? I really think if I ask for further testing he will do it and diagnose accordingly. I do agree that there is a since of relief having an answer.


[QUOTE=MSJayhawk;5322525]Michele,

The neurologist should be an MS Specialist to best assist you. Once you get a diagnosis, you should be able to rest better. There is a sense of relief when you get an answer.

I do not know how a lesion can be determined to be blood flow or low oxygen caused. An MS Specialist would check you and then determine the next required step. With over 400 MS mimicries, the doctor has to eliminate all of the possible causes. The matter of the VEP or LP or both is really up to the doctor. While there are no specific tests for MS, an LP is probably going to be ordered if your symptoms pique the doctor's interest. I was given a VEP in 2002 because they could find no active lesions on my c-spine or brain which would give cause for my severe symptoms. The Specialist will be more likely to order specialized testing rather than the general neurologist, but it really depends on the individual doctor.

When you get an answer, the "lazy" target on your back will vanish. For those around you who are close, some may flee if it is a chronic disease. I know I had fair weather friends disappear. I also had my mother spend time trying to get through a grieving process because she felt it was her fault. It does get better. :angel:[/QUOTE]





All times are GMT -7. The time now is 06:29 AM.





© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!