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Who has just been diagnosed with MS?
Anyone here who has just been diagnosed with MS? How about who is not diagnosed? I want to see your MS trekker. All of this is new to me. I see my second neuro next week. I will ask for a LBP and a spinal MRI using the MS protocol. I also need a follow up CT as I have new onset aphasia. Or should I just ask for another brain MRI? Life is too short to wait, wait, and wait. I am thankful to have you all here on the forum. You are my friends if that is okay with everyone?
I know and understand the frustration Minnie. Matter of fact I would like to punch that ER doc that I had in the nose. I am not violent either. Sorry I just needed to say it to someone.
Hugs
Jamie
Hugs
Jamie
There really is no biomarker for MS, no smoking gun test result that will say with certainty "MS!".
While it is often a long process, diagnosing MS can be relatively quick under the right cirumstances. My diagnosis, from first PCP visit to second MS specialist confiming opionion took about 8 weeks.
Absent the smoking gun, there is fairly standard set of tests that get run when trying to diagnose MS:
Brain & C-Spine MRI with and without Contrast - Looking for lesios bith old and new.
Rule out blood tests - for MS mimics
Evoked Potential - Nerve response testing
Lumbar Puncture - looking for oligoclonal bands in spinal fluid but not in blood drawn at same time.
Not all docs will use the same tests but these are the usual suspects. The swiftness of the diagnosis will be impacted by the results of these tests. In my case the dots lined up right away. I had old and ne lesions in both my brain and c-spine. All of my blood tests for mimcs came back negative and I had > 5 o-bands in my cerebral spinal fluid that did not show up in the blood sample. If it looks like a duck and quacks like a duck...I was "lucky" :-)
As Sarah points out the fun doesn;t really start until after the diagnosis. While MS is manaeable fo many, it is a life long partnership. ANd your relationship with your treating neurologist is like a marriage. Every 6 months I get to have MRI's and a lumbar buncture. Every 4 weeks I get to go to an infusion center for my Tysabri juice box. Every morning and evening I get to take a handful of meds and supplements...
Kyle
While it is often a long process, diagnosing MS can be relatively quick under the right cirumstances. My diagnosis, from first PCP visit to second MS specialist confiming opionion took about 8 weeks.
Absent the smoking gun, there is fairly standard set of tests that get run when trying to diagnose MS:
Brain & C-Spine MRI with and without Contrast - Looking for lesios bith old and new.
Rule out blood tests - for MS mimics
Evoked Potential - Nerve response testing
Lumbar Puncture - looking for oligoclonal bands in spinal fluid but not in blood drawn at same time.
Not all docs will use the same tests but these are the usual suspects. The swiftness of the diagnosis will be impacted by the results of these tests. In my case the dots lined up right away. I had old and ne lesions in both my brain and c-spine. All of my blood tests for mimcs came back negative and I had > 5 o-bands in my cerebral spinal fluid that did not show up in the blood sample. If it looks like a duck and quacks like a duck...I was "lucky" :-)
As Sarah points out the fun doesn;t really start until after the diagnosis. While MS is manaeable fo many, it is a life long partnership. ANd your relationship with your treating neurologist is like a marriage. Every 6 months I get to have MRI's and a lumbar buncture. Every 4 weeks I get to go to an infusion center for my Tysabri juice box. Every morning and evening I get to take a handful of meds and supplements...
Kyle
True, a diagnosis won't "cure" your problems.
The main reason I want to know what it is, is so that I will know there is a concrete reason for all this mess that's been happening to me. I'll still have the mess.
Hugs,
Minnie
The main reason I want to know what it is, is so that I will know there is a concrete reason for all this mess that's been happening to me. I'll still have the mess.
Hugs,
Minnie
they can't diagnose MS easily because it is such an individual disease, unlike cancer and other drugs. It affects everyone differently. If you were to put 100 MS patients in a room, you would have 100 different MS's. It's part of the complication. There are people who go thru their entire life never knowing they have it.
breathe, take a couple patience pills, and unfortunately, just getting a diagnosis would not solve your problems with a "quick take a pill, give me the RIGHT pill doc" afterthought! There will still be regular neuro visits, logs to keep, trying different drugs (some you might be allergic to, etc.) some don't work for you, regular MRI, labs, and emotional adjustments. Then depending on your drug of choice and its finances, more labs and things to follow.
We are hoping you do not have it, its the club no one wants to belong to for sure, and that's why we are all here together. You will note by reading our posts that we go up and down the emotional ladder and the medical ladder from day to day.
But we learn from each other, we learn so very much.
breathe, take a couple patience pills, and unfortunately, just getting a diagnosis would not solve your problems with a "quick take a pill, give me the RIGHT pill doc" afterthought! There will still be regular neuro visits, logs to keep, trying different drugs (some you might be allergic to, etc.) some don't work for you, regular MRI, labs, and emotional adjustments. Then depending on your drug of choice and its finances, more labs and things to follow.
We are hoping you do not have it, its the club no one wants to belong to for sure, and that's why we are all here together. You will note by reading our posts that we go up and down the emotional ladder and the medical ladder from day to day.
But we learn from each other, we learn so very much.
Thank you for your advice everyone. All of you have been through so much. It blows my mind too. In this day and age they should be able to diagnose MS right away. Instead you lose friends, go to too many docs who are rude, have to beg for tests, etc...all because most people don't believe we are experiencing the symptoms. Life is too short to have to spend it exerting yourself like this. But I have you guys to talk too now and it will make a huge difference in my life.
My journey has been a relatively short one thus far.
The main reason I suspect MS is because my symptoms affect my right side and my vision suddenly went bad this past Summer. I was told to see an Opthalmologist by my neurulogist, and she in turn requested that my neurologist evaluate me for Multiple Sclerosis and Myasthenia Gravis. So far, he has only pursued the MS testing, so I believe he is leaning in that direction.
Sarah is so right...you have got to be patient! Neruo time is like "Football Minutes." There can be two minutes left in the game but it can last for 30 more minutes, or even go into overtime! Patience is a virtue, and unfortunately I don't have much of it. I am being forced to work to improve that quality ;)
Best of luck to you!
Minnie :)
The main reason I suspect MS is because my symptoms affect my right side and my vision suddenly went bad this past Summer. I was told to see an Opthalmologist by my neurulogist, and she in turn requested that my neurologist evaluate me for Multiple Sclerosis and Myasthenia Gravis. So far, he has only pursued the MS testing, so I believe he is leaning in that direction.
Sarah is so right...you have got to be patient! Neruo time is like "Football Minutes." There can be two minutes left in the game but it can last for 30 more minutes, or even go into overtime! Patience is a virtue, and unfortunately I don't have much of it. I am being forced to work to improve that quality ;)
Best of luck to you!
Minnie :)
darn, I meant to say WHO not YOU, we also have typing and cognitive problems between our other problems.
Hi JE - Welcome to our Merry Band. Sorry that you have need of our counsel :-)
A couple of questions;
What did the first neuro say?
Is either first or second neuro an MS specialist?
What did your first brain MRI show?
Was your first brain MRI done both with and without contrast?
The standard MS MRI set includes brain and C-spine, both with and without contrast. All lesion show up without contrast. New, active lesions will glow , or enhance, when the contrast is added.
LP's are not always necessary to DX MS. They are largely used to confirm clinical and MRI findings.
Real aphasia is a possible MS symptom but it's realtively rare. Dysphasia, a slightly less severe variety, is more often a sympom of cognitive difficultes related to MS. We like to call it cog fog :-)
If it is cog fog than the CT probaly wouldn't add any value.
Kyle
A couple of questions;
What did the first neuro say?
Is either first or second neuro an MS specialist?
What did your first brain MRI show?
Was your first brain MRI done both with and without contrast?
The standard MS MRI set includes brain and C-spine, both with and without contrast. All lesion show up without contrast. New, active lesions will glow , or enhance, when the contrast is added.
LP's are not always necessary to DX MS. They are largely used to confirm clinical and MRI findings.
Real aphasia is a possible MS symptom but it's realtively rare. Dysphasia, a slightly less severe variety, is more often a sympom of cognitive difficultes related to MS. We like to call it cog fog :-)
If it is cog fog than the CT probaly wouldn't add any value.
Kyle
we have a separate forum for those not diagnosed, altho we have many here you are not. We also have many "lurkers" who don't chime in very often but read the forum.
I don't know how long you have had the suspicion that you have MS but its a LONG haul for many of us to get a diagnosis. Some of us have spent years and many doctors and many tests. I have 30 yrs of searching behind me before getting my diagnosis
Many diseases have to be ruled out first that are mimic diseases, so although we agree that life is too short, MS is a slow moving train and likes to lurk in the shadows and play hide and seek with you when you are looking for it.
Drag out your patience "card" and keep very good journals and notes and start a file with all of your reports and labs and dr visits in it!
Welcome to our forum!
I don't know how long you have had the suspicion that you have MS but its a LONG haul for many of us to get a diagnosis. Some of us have spent years and many doctors and many tests. I have 30 yrs of searching behind me before getting my diagnosis
Many diseases have to be ruled out first that are mimic diseases, so although we agree that life is too short, MS is a slow moving train and likes to lurk in the shadows and play hide and seek with you when you are looking for it.
Drag out your patience "card" and keep very good journals and notes and start a file with all of your reports and labs and dr visits in it!
Welcome to our forum!
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