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Scared & Confused
Hello there...this is my first post. I am a 45 year old female who is currently going through a bunch of testing, which came as a big surprise.
A couple of weeks ago my left arm went completely numb for no reason. I did not think I was sitting funny. I have had numbness/pins and needles in my feet/legs for several years (which I attribute to a back injury), but I have gotten used to ignoring that. The arm thing was new and felt stronger. About 10 minutes later, my left cheek went numb. I called my friend who is an ICU nurse and she dragged me to the ER. She thought I might be having a stroke. I did not think I was, but of course the ER followed their protocol and did a brain MRI.
I also mentioned to the ER doc that about 1 1/2 years ago I noticed a tremor in my left hand, over time my right hand began to tremor as well. I thought it was related to exercise and caffeine consumption, but it is there every day, although it is worse when I am hungry, have had coffee, too cold. etc.
Next thing I know there is a neurologist in my room telling me that I did not have a stroke and that there are no tumors on my brain. So why is he HERE I am thinking. Then he tells me "there are a bunch of white spots on your brain" and given your age and symptoms we can not ignore them.
He tells me it can be from hypertension, migraines, cholesterol, diabetes, or demyelinating disease. I don't have any of those chronic medical issues. They drew blood in the ER and I was told to see the neuro at the clinic within a few days.
After the neurologist left, the ER doctor comes in and tells me, "I really think you have Multiple Scleroris. I am sorry." He also tells me the neurologist is the one who has to diagnose it, but that was his thought based on my symptoms and the report from the radiologist.
I saw the same neurologist in the clinic. The first thing he said to me was "I really don't think that you have MS." I was very happy to hear that. He said it was more likely lymes or some other infection. He also said I see in your family history that your mother had MS, but I don't want you to be worried about that.
Then he orders the following: I had about 100 blood tests run, MRI of neck and spine with and without contrast. He said if there are any lesions on the new MRIs I would need a spinal tap. I am also having an evoke test (for my eyes......he said that response is delayed in people with MS.
All my labs have come back normal. No lymes or other infectious disease. My vitamins were all good. I have not heard on the MRI yet (but I figure if he is waiting to tell me at my next appt (in 10 days) that must mean it was clear. The evoke test is also that day, right before I see him.
So if he thinks I do not have MS, why is he doing all these tests? I am so confused and I am scared.
My symptoms are the numbness/pins & needles (it never went away and has moved to my other arm, and other areas intermittently), the tremor, and I failed on my testing for balance. I have noticed my balance has been bad the past few months and it has affected my running, but I have been ignoring that too.
I don't want to get this diagnosis. I don't want any diagnosis. I've read so many stores of people who want all this testing done because they think they have MS and the Dr. won't do it. Yet my Dr is saying I don't have it and still doing all the tests for it.
I am so confused and scared to death. I regret going to the ER that day.
A couple of weeks ago my left arm went completely numb for no reason. I did not think I was sitting funny. I have had numbness/pins and needles in my feet/legs for several years (which I attribute to a back injury), but I have gotten used to ignoring that. The arm thing was new and felt stronger. About 10 minutes later, my left cheek went numb. I called my friend who is an ICU nurse and she dragged me to the ER. She thought I might be having a stroke. I did not think I was, but of course the ER followed their protocol and did a brain MRI.
I also mentioned to the ER doc that about 1 1/2 years ago I noticed a tremor in my left hand, over time my right hand began to tremor as well. I thought it was related to exercise and caffeine consumption, but it is there every day, although it is worse when I am hungry, have had coffee, too cold. etc.
Next thing I know there is a neurologist in my room telling me that I did not have a stroke and that there are no tumors on my brain. So why is he HERE I am thinking. Then he tells me "there are a bunch of white spots on your brain" and given your age and symptoms we can not ignore them.
He tells me it can be from hypertension, migraines, cholesterol, diabetes, or demyelinating disease. I don't have any of those chronic medical issues. They drew blood in the ER and I was told to see the neuro at the clinic within a few days.
After the neurologist left, the ER doctor comes in and tells me, "I really think you have Multiple Scleroris. I am sorry." He also tells me the neurologist is the one who has to diagnose it, but that was his thought based on my symptoms and the report from the radiologist.
I saw the same neurologist in the clinic. The first thing he said to me was "I really don't think that you have MS." I was very happy to hear that. He said it was more likely lymes or some other infection. He also said I see in your family history that your mother had MS, but I don't want you to be worried about that.
Then he orders the following: I had about 100 blood tests run, MRI of neck and spine with and without contrast. He said if there are any lesions on the new MRIs I would need a spinal tap. I am also having an evoke test (for my eyes......he said that response is delayed in people with MS.
All my labs have come back normal. No lymes or other infectious disease. My vitamins were all good. I have not heard on the MRI yet (but I figure if he is waiting to tell me at my next appt (in 10 days) that must mean it was clear. The evoke test is also that day, right before I see him.
So if he thinks I do not have MS, why is he doing all these tests? I am so confused and I am scared.
My symptoms are the numbness/pins & needles (it never went away and has moved to my other arm, and other areas intermittently), the tremor, and I failed on my testing for balance. I have noticed my balance has been bad the past few months and it has affected my running, but I have been ignoring that too.
I don't want to get this diagnosis. I don't want any diagnosis. I've read so many stores of people who want all this testing done because they think they have MS and the Dr. won't do it. Yet my Dr is saying I don't have it and still doing all the tests for it.
I am so confused and scared to death. I regret going to the ER that day.
Best Answer
Supermum and Kyle...
Thank you. You two are too sweet. Your posts make me feel better. You are right...I should want to know so I can keep it from progressing if it is MS or some other treatable disease.
So until I know more, I am just staying positive and keeping busy enough that I don't think about it constantly.
Thanks again!
Thank you. You two are too sweet. Your posts make me feel better. You are right...I should want to know so I can keep it from progressing if it is MS or some other treatable disease.
So until I know more, I am just staying positive and keeping busy enough that I don't think about it constantly.
Thanks again!
Hi ZD-
Your neurologist is doing a really good job. Many here have to beg to get the necessary tests to rule MS in or out. Your doc is following a very logical diagnostic path. He said he didn't think you had MS. He needs to verify this thought and so is putting you through the required tests.
The LP makes sense if there is evidence of lesions on your MRI. If there are no lesions on your MRI, many docs do not request an LP. LP's confirm existing results. They are not stand alone tests. By themselves they can neither diagnose MS nor rule it out.
Like you, I didn't need or want a label. The symptoms I have everyday have just become my normal. The problem is that even if you don't label it, MS marches on. It is a progressive disease. It may go away for a while but generally speaking it comes back. Having a diagnosis will give you access to any of a number of disease modifying drugs. These drugs are designed to keep MS from progressing.
If you do find out you have MS, it isn't the end of life as you know it. I've had it for over 20 years and should you see me on the street you'd never guess :-)
Let us know what the MRI says.
Kyle
Your neurologist is doing a really good job. Many here have to beg to get the necessary tests to rule MS in or out. Your doc is following a very logical diagnostic path. He said he didn't think you had MS. He needs to verify this thought and so is putting you through the required tests.
The LP makes sense if there is evidence of lesions on your MRI. If there are no lesions on your MRI, many docs do not request an LP. LP's confirm existing results. They are not stand alone tests. By themselves they can neither diagnose MS nor rule it out.
Like you, I didn't need or want a label. The symptoms I have everyday have just become my normal. The problem is that even if you don't label it, MS marches on. It is a progressive disease. It may go away for a while but generally speaking it comes back. Having a diagnosis will give you access to any of a number of disease modifying drugs. These drugs are designed to keep MS from progressing.
If you do find out you have MS, it isn't the end of life as you know it. I've had it for over 20 years and should you see me on the street you'd never guess :-)
Let us know what the MRI says.
Kyle
COMMUNITY LEADER
I believe in keeping it real, and what's more real than prevention and being proactive with your health, your way of life, your future? I get where your coming from, sort of been there done that, honestly the simple blunt truth is.............IF something is medically wrong with you, you can't avoid it because it's already here!
You maybe right and it's all been a shocking over reaction from a trip to the ER but what if you are living with an unnamed medical condition and just the thought of it scares you enough to avoid finding out, and you do decide your better off not knowing and avoid facing it because your been doing fine.
Do you honestly and truly believe that by avoiding what 'may' already be your truth, that that would be the end of it.......I know a lot of people that would wish that to be true but unfortunately, if you do have a medical condition named or not, odds are eventually you will have to face it. It's in your best interest to know what's going on with your health, and yes whilst your doing fine, because it's a bit late avoiding knowing your truth........until your not!
I'm not going to revamp my story, admittedly i am bias on the need to know, lets just say........... I wish i knew what was going on before I wasn't doing fine, cause it's way too late to shut the blasted gate now, the horse has well and truly bolted.
Please be brave, be strong and courageous and what ever it may turn out to be, something or nothing, I believe you have it in you, to dig deep and face the finding out!
HUGS..........JJ
You maybe right and it's all been a shocking over reaction from a trip to the ER but what if you are living with an unnamed medical condition and just the thought of it scares you enough to avoid finding out, and you do decide your better off not knowing and avoid facing it because your been doing fine.
Do you honestly and truly believe that by avoiding what 'may' already be your truth, that that would be the end of it.......I know a lot of people that would wish that to be true but unfortunately, if you do have a medical condition named or not, odds are eventually you will have to face it. It's in your best interest to know what's going on with your health, and yes whilst your doing fine, because it's a bit late avoiding knowing your truth........until your not!
I'm not going to revamp my story, admittedly i am bias on the need to know, lets just say........... I wish i knew what was going on before I wasn't doing fine, cause it's way too late to shut the blasted gate now, the horse has well and truly bolted.
Please be brave, be strong and courageous and what ever it may turn out to be, something or nothing, I believe you have it in you, to dig deep and face the finding out!
HUGS..........JJ
Thanks supermum.
I was hoping that too. I didn't think much of it when I saw it on the order sheets they gave me for the blood work and additional MRIs.
It is when I reviewed my visit note online I saw diagnosis: demyelinating disease.
Whatever my issue is, I don't want/need to know a name for it. I was living just fine with these symptoms for the past year and a half. Why do I have to name it or rule out every possible cause (which may be nothing) just because of an incidental finding on an MRI? It seems like a waste of money and healthcare resources to me. Not to mention a waste of energy on all the stress it has caused me.
Thanks!
I was hoping that too. I didn't think much of it when I saw it on the order sheets they gave me for the blood work and additional MRIs.
It is when I reviewed my visit note online I saw diagnosis: demyelinating disease.
Whatever my issue is, I don't want/need to know a name for it. I was living just fine with these symptoms for the past year and a half. Why do I have to name it or rule out every possible cause (which may be nothing) just because of an incidental finding on an MRI? It seems like a waste of money and healthcare resources to me. Not to mention a waste of energy on all the stress it has caused me.
Thanks!
COMMUNITY LEADER
I'm not sure about USA billing requirements but considering there is a huge difference between being diagnosed with a demyelinating disease and ordering test to investigate demyelinating disease. I suspect from everything you've said, that it's just whats written when ordering certain types of tests and wouldn't actually be your diagnosis.
It's not a guessing game, there is an MRI diagnostic criteria for dx MS, lesion location is a pretty important factor because other conditions cause lesions too but there are other factors to distinguish cause. Keep in mind that sx behaviours and clinical signs of lesions are just as important as the MRI or any other test evidence.
Try not to worry too much, it can take a long time to work out what the problem is, baby steps....
Cheers........JJ
It's not a guessing game, there is an MRI diagnostic criteria for dx MS, lesion location is a pretty important factor because other conditions cause lesions too but there are other factors to distinguish cause. Keep in mind that sx behaviours and clinical signs of lesions are just as important as the MRI or any other test evidence.
Try not to worry too much, it can take a long time to work out what the problem is, baby steps....
Cheers........JJ
Thank you all for your kind replies. All the blood tests for "other possibilities" have come back negative. He was certain I had lymes, but that has been ruled out.
Someone asked why no lumbar puncture. He did say I would have that IF there are lesions on the neck or back MRIs. I go back next week and I am guessing they are most likely clear as he hasn't called to ask me to come in for the other test.
Also, I saw on my chart he diagnosed me with: demyelinating disease.
Do they call it that even if it is from some vascular problem (like hypertension, migraines etc). Can they tell the difference on MRI between the actual nerve damage and just a vascular problem? Or is it all one big guessing game. This is where I am confused. I don't have any of those conditions (my blood pressure is always low, no diabetes, no headaches, cholesterol is great, etc.)
I am hoping this is just the diagnosis for billing, to justify all this testing. In the end, maybe he'll just tell me I'm fine. After all, I didn't go searching any of this out...they did!
Thanks
Someone asked why no lumbar puncture. He did say I would have that IF there are lesions on the neck or back MRIs. I go back next week and I am guessing they are most likely clear as he hasn't called to ask me to come in for the other test.
Also, I saw on my chart he diagnosed me with: demyelinating disease.
Do they call it that even if it is from some vascular problem (like hypertension, migraines etc). Can they tell the difference on MRI between the actual nerve damage and just a vascular problem? Or is it all one big guessing game. This is where I am confused. I don't have any of those conditions (my blood pressure is always low, no diabetes, no headaches, cholesterol is great, etc.)
I am hoping this is just the diagnosis for billing, to justify all this testing. In the end, maybe he'll just tell me I'm fine. After all, I didn't go searching any of this out...they did!
Thanks
What an experience in the ER! I hope someone can be more definitive for you soon. Wishing you good health and good doctors : )
Hello zerodegrees,
I am new here as well.
As the others have told you, try not to stress out. It can and will make your sypmtoms worse than they already are. Read a book, work a puzzle,retail therapy aka shopping (my fav), lol, anything to take your mind off until you get answers. The answers will come, sometimes it just takes awhile.
I have to say and dont mean to scare you any at all, but Im surprised they havent done a Lumbar Puncture aka LP yet. That will rule out and give answers. It can rule out Guillain Barre Syndrome, MS...they have some of the same symptoms. That was one of the first tests I had done, following a complete MRI of the brain, Cspine, thoracic and lumbar spine, with and without contrast.
You hang in there sunshine!!!! Big hugs to you!!
I am new here as well.
As the others have told you, try not to stress out. It can and will make your sypmtoms worse than they already are. Read a book, work a puzzle,retail therapy aka shopping (my fav), lol, anything to take your mind off until you get answers. The answers will come, sometimes it just takes awhile.
I have to say and dont mean to scare you any at all, but Im surprised they havent done a Lumbar Puncture aka LP yet. That will rule out and give answers. It can rule out Guillain Barre Syndrome, MS...they have some of the same symptoms. That was one of the first tests I had done, following a complete MRI of the brain, Cspine, thoracic and lumbar spine, with and without contrast.
You hang in there sunshine!!!! Big hugs to you!!
Welcome to the community. I'm glad you found us, but sorry you needed to...
A lot of what you describe does sound suspicious. But then again, some of it doesn't sound like MS, so I can understand your doctors giving you conflicting reports. Your current neurologist is just being thorough with all the testing.
MS can take a pretty long time to diagnose. They have to exclude every other possibility first, and then- frequently they still have to wait and see if other lesions and symptoms develop. For some this is pretty quick. For others, it can take years.
At this point, they can't definitively rule MS "in" or "out". This will take time. The best thing you can do (hard as it is) is try to focus on other things. The stress of waiting can actually cause your symptoms to feel worse than they really are. So if you can, I'd advise taking on a project of some sort, that will divert your attention away from this, at least somewhat.
I hope you don't have to wait too long for answers.
Tammy
A lot of what you describe does sound suspicious. But then again, some of it doesn't sound like MS, so I can understand your doctors giving you conflicting reports. Your current neurologist is just being thorough with all the testing.
MS can take a pretty long time to diagnose. They have to exclude every other possibility first, and then- frequently they still have to wait and see if other lesions and symptoms develop. For some this is pretty quick. For others, it can take years.
At this point, they can't definitively rule MS "in" or "out". This will take time. The best thing you can do (hard as it is) is try to focus on other things. The stress of waiting can actually cause your symptoms to feel worse than they really are. So if you can, I'd advise taking on a project of some sort, that will divert your attention away from this, at least somewhat.
I hope you don't have to wait too long for answers.
Tammy
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It's not unusual for the type of testing people have under ER situations, to not actually work out what the exact problem is, especially if they don't find anything that requires immediate attention but do find something's that requires further investigation. There is a long list of potential causes, and because of your age, gender, brain MRI and sx's that does put MS on that list, but it's one of many that needs to be ruled out or to be moved higher on your potential list.
Just like all those viles of blood they took to investigate different but specific abnormalities, to investigate MS there are different but specific tests and your combined test results help to create a clearer picture of what's going on. It may not turn out to be MS, but regardless of the cause YOU deserve to know the right answers, so you can deal with the what ever, head on and not be blind sided.
Please try not to read more into the amount and type of testing your going through, or worry your self silly about what was said by the ER doc vs what the neuro has told you, because at this stage MS is just one of the 'many' possibility and until you know for sure, it's in your best interest to stay calm and breath!
Hugs.............JJ