Still confused...: So when I saw neuro he... - My MSAA Community

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Still confused...

Shaunaice profile image
10 Replies

So when I saw neuro he did a clinical diagnosis of ms... I had head mri only at the time...he sent me for spine n it was clear of lesions...I understand moving forward of getting everything else out of the picture but I received a email in my portal yesterday stating he thinks it a nervous system disorder but probably not ms based on the fact that I don't have lesions on my spine and ms dont not have pain and stiffness with it? I'm really confused I'm going to get a lyme test this week...from what I've learned here n my own feelings in my body everything points to ms...this was all coming from him through his nurse...I would appreciate feed back...I'm so frustrated

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Shaunaice profile image
Shaunaice
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10 Replies
anaishunter profile image
anaishunter

One aspect of MS that can be difficult (it was for me) is the need to wait for a proper diagnosis. The first MRI that showed "potential demyelination" was done in Feb, the actual confirmation of diagnosis in late June. And I am a clear cut case of MS. But in-between: 2 neuros (1 general, 1 specialized in MS), 2 additional MRIs, and more than 20 blood tests to eliminate other diseases.

They need to make the correct diagnosis and will proceed with caution to eliminate any other disease as there's currently no biomarker of MS. Waiting through the process can be excruciating.

I would advise you to ask your neuro questions about the process:

- what other disease(s) is he/she testing for?

- Do they plan a spinal tab? (it's not a conclusive test either but it's a good indicator).

also,

- Is your neuro an ms specialist?

- Was the email you received written by the doctor or the technician who did the MRI?

Don't fill the blanks for them and ask. Please tell us how it goes. Be patient. We're with you.

Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Hi Shaunaice I know your frustrated. And I know you want answers. But I also know you want the Right answers!☺️

Look you don't want this. So let your Dr do his or her job and figure it out.🤗

MS and Drs go at there own speed!

🤗💕

J🌠

kdali profile image
kdali

There’s a lot of diseases that mimic MS. Lyme test is the next logical step. Sounds like you have a great MD! Congrats on no MS brain damage!

carolek572 profile image
carolek572CommunityAmbassador

Hello Shaunaice

‘ms’ diagnosis is not something that one should take lightly! Let your medical team be absolutely sure. I am praying that you will not have ‘ms’, my dear.

Stay Strong,

Carole :-D

Shaunaice profile image
Shaunaice

I understand it's not a quick diagnosis I beleave in the idea to be thorough...but what I dont beleave in is him saying he beleave it was ms in clinical then turning around n saying just because it's not in the spine it's not ms...I dont want it beleave me but I dont want to be confused either...ty all

Iona60 profile image
Iona60 in reply to Shaunaice

Maybe the symptoms that you are having usually correlate to Ms spinal lesions. This may be why he thinks it is something else.

Shaunaice profile image
Shaunaice

Hemisensory deficit Hyperreflexia Optic atrophy these are what he diagnosed so far

ssdw1958 profile image
ssdw1958

Hi It sounds like everybody has told you a lot of good information you need to make sure you are neurologist is in a sounds like everybody has told you a lot of good information you need to make sure your are neurologist is in an MS Specialist. You can take a couple of MRI’s to figure out what is going on the final test for me was a spinal tap. If you do have a spinal tap you need to listen to the doctor for what to do afterwards need to lie flat on your back for at least three days because if you don’t I will get a migraine headache that hurts so bad. I know this because I did not listen to my doctor My doctor told me not to drive my self to the appointment and to recline the chair in the car as far back as I could. Which I did that part but I decided after the second day to do a load of laundry which meant I had to bend down what a big NONO. I hope you do not have MS but please find out what is going on with your body.

P.S. if you do have MS think before you let anyone know that you have MS. Especially at work That’s just something I would have done differently. That could have been something at my job only but be careful. You know you can talk to us here about what is going on with your health. But then again remember we are not doctors. The MS Society is also a great place to get information from.

Good luck to you.

RoyceNewton profile image
RoyceNewton

Get a second opinion and "YOU" most certainly do not even have to have spinal lesions to have ms. A second opinion is a good idea but be smart about what you say to the second neurologist

jimeka profile image
jimeka

What does he mean, ms dose not have pain and stiffness. Tell him if he needs educating in ms, just come to this forum and read all about the pain, stiffness and suffering. Get yourself a neurologist who specialises in ms. Let us know how you get on, blessings 🦋

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