Neuro follow up....I am confused??

[Shabesh]

I had my follow up with my neurologist yesterday. I am really confused. I have an area of abnormality in the area of my first big lesion and several other scattered area. However, my MRI does not explain my symptoms. Well, I feel like I am in my 20's again. I don't understand it. I know how I feel but the neurologist does not think I should have all of the symptoms that I have because there is no lesion load. He said I have mild MS by the results of his testing.

How frustrating!!!! He thinks my dizziness might be caused by inner ear issues. He is setting me up with an ENT in Memphis. He also is referring me to a MS specialist in Memphis as well. Just for the record I feel like a hypochondriac. I have fell twice in the last 2 months but he is sure it is from inner ear issues. Maybe I am over dramatizing things.

Maybe it is all in my head. I hate having self doubt. I hate this disease. He told me you have the diagnosis but I would say it is 50/50 that is is MS. My question to him "Well if it is not MS, what is it?" The answer...wait for it...."You might not ever know." Are you kidding me???? What!!!! He has put me on Lyrica for my facial and tongue burning and pain. That is from the area of "abnormality" that evidently has flared from 6 years ago. I am at a loss. I feel like I am at square one.

I will wait for the MS specialist to tell me I am crazy and then go from there. Urghhhhh!!!

[kellygrn]

We are humans like everyone else

MS is not the ONLY thing wrong with our bodies. I had a hole in my underside of my knee cap. Had to have surgery to correct that. Had do have hysterectomy because of cancer. That definitely was not MS.

It is good that you are going to other specialists. Have everything checked out. Just in case. The lesions may not be the only slots that are effected. The wiring gets crossed just because.

KK

[Justsayyes]

It's been said many times that lesion load doesn't always correlate with how we are feeling. Some with few lesions have many symptoms, some with many lesions doing very well.

Of course I'm not a healthcare professional, and I haven't read the results of your tests. A second opinion is probably a good idea.

I do see an ENT, and many here do as well. My ENT and neuro have not always agreed on what symptoms could be MS related and what are not. I feel better knowing I'm seeing an ENT for certain symptoms. They often specialize in vestibular disorders, so experts in treating vertigo/dizziness, etc.

Aren't we all crazy here?

[Rich Marcell]

I've been diagnosed with MS now for almost 21 years and everything I've read over those years says that you can't look at an MRI and correlate lesion size and location to symptoms.

I've been with the same neurologist who specializes in MS most of that time and the only time he's made any reference to MRI - symptom connections was when I first went to him for a 2nd opinion and he did spinal MRIs because he said my symptoms could also be explained by a tumor on the upper spinal cord (diagnosis had already been made based on symptoms, lesions showing on brain MRI and spinal tap results). There was no tumor and were multiple spinal cord lesions.

He's also always been a proponent of "people with MS get sick too" which means you have to test for other stuff when it makes sense.

Doesn't make it any less frustrating though.

[Alicious]

The not knowing what is going on is awful, but additional specialists can give you more answers and a greater understanding of what is going on. I personally prefer doctors who will ask for other opinions to ones who think they know everything.

I have inner ear issues too; they aren't MS, but telling the difference can be hard to do. Our bodies keep breaking as we age, and it's not all MS.

I hope that you can get things figured out soon. Hang in there!

[cosake]

I understand how frustrated you must be to NOT know what is going on. That is the worst feeling. But, please take note of the posts that state that lesion load does not always correspond with symptoms -- everyone is unique and different.

And, checking to see if something that is happening is not MS is good advice on your doctor's part. It would be awful to chalk something up to MS when it might be something that could be easily resolved if discovered to not be MS-related.

I have weird bladder problems that are unrelated to MS, just as an example.

Good luck.

[Jensequitur]

My neurologist told me that I had a relatively light lesion load in the brain, but because of my symptoms, I probably had several lesions in the gray matter of the brain. The MRI isn't really good at picking out those lesions, because there's very little myelin in the gray matter.

[wrest53]

Symptoms

Please have your eyes checked. I was sent to and ENT and told I had a virus. Nystagmus (involuntary eye movements) can cause dizziness. My daughter can tell when I have it from looking at my eyes. The beats will be horizontal or vertical.

[sloth]

hello shabesh
I was surfing for info for me and came across a great article that address' your question of sxs verses lesion locale very well.
I will put the link in my profile for you. hope it helps.
sloth

[sloth]

the link I put in my profile for you is clickable under the tab that says visit sloths homepage or public profile and contact tab

[Shabesh]

Thanks Sloth

I just read that article and my first lesion was a lesion in the brain steam area and it has left me with a numb tongue and facial pain 24 hours a day. Some days are better than others. I am just feeling a little confused about different neurologist and their take on MS. It can be frustrating to say the least. I just need to take it one day at a time and see what the specialist thinks. I know how I feel and I know my symptoms are real. I just hate leaving a doctor appt. feeling that way. Off to the doctor today...I fell again walking my dog and evidently have pulled a muscle in my ribs or something. Thanks for the information.