Aa
2nd MRI results from Neurologist
I had my 2nd MRI (brain) on Monday, November 16th (1st MRI was August 19th)
I had my 4th appointment with my Neurologist on Tuesday, November 17th.
[Note: Tech that did my MRI let it slip that there was now more than one cyst, she didn't say how many, and more lesions, again she didn't say how many]
My Neurologist did not tell me anything about the MRI except "more of the same" (whatever that means).
He failed to tell me about any cysts or lesions.
He did say he was going to do a spinal tap and another test that he described as "they have you look at a checkerboard and take pictures from the back of your head".
Both these tests are to be performed this Thursday, November 19th.
The confusing part for me was this, my appointment after my 1st MRI (August 27th), my Neurologist told my wife (about the walnut-sized cyst and 12-16 lesions) and that this meant I had MS (come back in 2 months and I could not go back to work).
My next appointment (October 19th), he really didn't say much other than come back in another 2 months and still I could not go back to work (he didn't order any more tests like a spinal tap).
My next appointment therefore was scheduled for December 14th, but since I probably would not have insurance by then, we moved it up (along with a scheduled 2nd MRI), the MRI (November 16th) and the appointment with Neurologist (November 17th).
My Neurologist scheduled the spinal tap and "other test" for this Thursday, November 19th (because we again reminded him I may not have insurance at the end of this month). Now, get this, he wanted to do these tests to "rule out" things, including MS. He is going on vacation until the first week of December, and would not be here should something go wrong with my spinal tap, so he wanted us to wait, but he decided he could let my PCP (family doctor) know about the spinal tap and ask him to keep an eye on me, in case there was any complications. However, this means when he returns (from vacation) the first week on December, I may not have insurance to find out the results of the 2 tests.
I'm really confused because after my first MRI he told my wife I had MS.
When I saw him Tuesday, he said my symptoms were from the head injury?
So, he is ordering these other 2 test to rule out "other things" including MS???
Why did he say I have MS, and now he is trying to "rule it out"???
Oh well, I will let you know what I find out about the spinal tap and other test.
Thank you for your time, consideration, and cooperation, I truly appreciate it.
Take care and God bless.
-- Socrates2k1
I had my 4th appointment with my Neurologist on Tuesday, November 17th.
[Note: Tech that did my MRI let it slip that there was now more than one cyst, she didn't say how many, and more lesions, again she didn't say how many]
My Neurologist did not tell me anything about the MRI except "more of the same" (whatever that means).
He failed to tell me about any cysts or lesions.
He did say he was going to do a spinal tap and another test that he described as "they have you look at a checkerboard and take pictures from the back of your head".
Both these tests are to be performed this Thursday, November 19th.
The confusing part for me was this, my appointment after my 1st MRI (August 27th), my Neurologist told my wife (about the walnut-sized cyst and 12-16 lesions) and that this meant I had MS (come back in 2 months and I could not go back to work).
My next appointment (October 19th), he really didn't say much other than come back in another 2 months and still I could not go back to work (he didn't order any more tests like a spinal tap).
My next appointment therefore was scheduled for December 14th, but since I probably would not have insurance by then, we moved it up (along with a scheduled 2nd MRI), the MRI (November 16th) and the appointment with Neurologist (November 17th).
My Neurologist scheduled the spinal tap and "other test" for this Thursday, November 19th (because we again reminded him I may not have insurance at the end of this month). Now, get this, he wanted to do these tests to "rule out" things, including MS. He is going on vacation until the first week of December, and would not be here should something go wrong with my spinal tap, so he wanted us to wait, but he decided he could let my PCP (family doctor) know about the spinal tap and ask him to keep an eye on me, in case there was any complications. However, this means when he returns (from vacation) the first week on December, I may not have insurance to find out the results of the 2 tests.
I'm really confused because after my first MRI he told my wife I had MS.
When I saw him Tuesday, he said my symptoms were from the head injury?
So, he is ordering these other 2 test to rule out "other things" including MS???
Why did he say I have MS, and now he is trying to "rule it out"???
Oh well, I will let you know what I find out about the spinal tap and other test.
Thank you for your time, consideration, and cooperation, I truly appreciate it.
Take care and God bless.
-- Socrates2k1
I hope to give you a longer answer at some time, but I wanted to comment on the bath shower thing. It really isn't so important that you not bath and only shower as that you ONLY do either in mildly warm water. It is the heat and not the sitting in the water that is dangerous for MS.
In fact, a nice luxurious hot shower can do ever bit as much damage as a warm bath. the elevation of core body temp - ever so slight - is what can bring on an psuedo-exacerbation of symptoms. When I was first being diagnosed, I noticed that after a shower (of course, hot) I would have new symptoms. I innocently asked my neuro if the symptoms after a hot shower were going to be my next permanent symptoms. He bellowed at me, "NO MORE HOT SHOWERS!!"
In fact, for those with MS who can and want to exercise heavily, they recommend precooling with a cool bath. So, again, it is the temp of the water not the method, that does us dirt.
I agree that Provigil helps my cognitive problems and also my dizziness - along with allowing me to be upright for more hours. I could not be on this forum for more than one or two answers with Provigil, (Now you all know how to get me off of here!)
You have heard wonderful advice from all of the people above. I hope you stay and let us help through these weird times.
Quix
In fact, a nice luxurious hot shower can do ever bit as much damage as a warm bath. the elevation of core body temp - ever so slight - is what can bring on an psuedo-exacerbation of symptoms. When I was first being diagnosed, I noticed that after a shower (of course, hot) I would have new symptoms. I innocently asked my neuro if the symptoms after a hot shower were going to be my next permanent symptoms. He bellowed at me, "NO MORE HOT SHOWERS!!"
In fact, for those with MS who can and want to exercise heavily, they recommend precooling with a cool bath. So, again, it is the temp of the water not the method, that does us dirt.
I agree that Provigil helps my cognitive problems and also my dizziness - along with allowing me to be upright for more hours. I could not be on this forum for more than one or two answers with Provigil, (Now you all know how to get me off of here!)
You have heard wonderful advice from all of the people above. I hope you stay and let us help through these weird times.
Quix
Karen gave you good suggestions. MS is so unpredictable. You may find yourself able to write in a few weeks or in a matter of several months. I write, too, but just for fun. Also consider that you've had so many things going on with you right now that it's crowding out any creative thinking--much like a computer bogged down with too many programs and files. When I was first diagnosed, I couldn't even stay on topic with my husband when I spoke to him.
I think the suggestion for getting some counseling or going to a psychiatrist is an excellent one. Part of good MS treatment involves getting all of those brain chemicals leveled out when they're screwed up. Rebif, although a wonderful drug for MS, can cause depression. MS can cause all sorts of psychological problems in and of itself. Plus, it appears that your pain situation needs to be better controlled. It may take some time to find the right medicines for this. It's certainly much colder out, and this doesn't help with the spasticity.
There's lots of us that can relate to the cognitive issues. There was a time when I felt like Dorry the Fish on Finding Nemo. I am much better. I do think that the Provigil that I take for fatigue had the added bonus with helping with cognitive issues. This is one of the things I complained about with my doctor that brought tears to my eyes. I started this medicine about six months prior to my diagnosis in Feb. 2008, and it's helped tremendously. It took some time before I noticed improvement, but it was significant.
There are some medicines out there that improve the quality of life for MS patients--even cognitive dysfuntion. Ask your neuro about this.
Take care,
Deb
I think the suggestion for getting some counseling or going to a psychiatrist is an excellent one. Part of good MS treatment involves getting all of those brain chemicals leveled out when they're screwed up. Rebif, although a wonderful drug for MS, can cause depression. MS can cause all sorts of psychological problems in and of itself. Plus, it appears that your pain situation needs to be better controlled. It may take some time to find the right medicines for this. It's certainly much colder out, and this doesn't help with the spasticity.
There's lots of us that can relate to the cognitive issues. There was a time when I felt like Dorry the Fish on Finding Nemo. I am much better. I do think that the Provigil that I take for fatigue had the added bonus with helping with cognitive issues. This is one of the things I complained about with my doctor that brought tears to my eyes. I started this medicine about six months prior to my diagnosis in Feb. 2008, and it's helped tremendously. It took some time before I noticed improvement, but it was significant.
There are some medicines out there that improve the quality of life for MS patients--even cognitive dysfuntion. Ask your neuro about this.
Take care,
Deb
Hi. Sorry to hear about your diagnosis. This is a difficult time for you, many questions uncertainties, and adjustments.
It's late here and I just got back from the ER because of a sinus infection. My head is not clear but I did want to respond to you tonight.
First, I want to let you know that you write very well. It is very possible that you will find your poetic words again. I would not throw in the towel just yet. I had a huge problem with spelling after my first attack. Most of it is back!!!
You would do well to talk with a psychiatrist who works with folks who have MS. They can do cognitive testing to see where your weakness' are and suggest brain exercises to help in those areas. They can also tell you what your strengths are. I did this type of testing and it was insightful and useful.
Also, you could benefit greatly with one on one counseling at this time to unload your burden and find a constructive plan of action.
Have you been to the various MS websites? They are packed with info for the newly diagnosed. There is also a book that I highly recommend: Managing the Symptoms of Multiple Sclerosis by Randall Shapiro. It is in it's 5th edition. This is my MS bible.
Hang tight. Being diagnosed with MS is mind boggling and there is much to sort out. Give it time, you will find your way.
Good night for now.
It's late here and I just got back from the ER because of a sinus infection. My head is not clear but I did want to respond to you tonight.
First, I want to let you know that you write very well. It is very possible that you will find your poetic words again. I would not throw in the towel just yet. I had a huge problem with spelling after my first attack. Most of it is back!!!
You would do well to talk with a psychiatrist who works with folks who have MS. They can do cognitive testing to see where your weakness' are and suggest brain exercises to help in those areas. They can also tell you what your strengths are. I did this type of testing and it was insightful and useful.
Also, you could benefit greatly with one on one counseling at this time to unload your burden and find a constructive plan of action.
Have you been to the various MS websites? They are packed with info for the newly diagnosed. There is also a book that I highly recommend: Managing the Symptoms of Multiple Sclerosis by Randall Shapiro. It is in it's 5th edition. This is my MS bible.
Hang tight. Being diagnosed with MS is mind boggling and there is much to sort out. Give it time, you will find your way.
Good night for now.
Yes, you are right, this was found quite by accident (I fell off my deck on July 3rd, and had severe head trauma, closed-head injury, severe neck trauma, dislocated left thumb and a severe chest contusion. The routine MRI done a month after the fall revealed the MS.
As my wife now says, we are glad to know I have MS (because we now know for certain what it is), and we are also angry because I have MS.
I'm also a cancer survivor (TC - testicular cancer), I have NASH (Nonalcoholic Steatohepatitis), and I have Gilbert's Syndrome, so this just adds insult to injury, if you know what I mean.
My MRI in November revealed multiple cysts (previously only one walnut-sized) and more than 16 lesions (previously 12-16).
I'm not sure what this medicine (Rebif) will be able to do, to help me with my MS symptoms, but I'm sure it can't hurt (unless I'm allergic to it).
My Neurologist didn't specify which type of MS he believes I have, but I guess that will take some time, watching its' progression.
After reading about some of the other medications I could be taking, Rebif doesn't sound too bad, since it's in a shot form taken 3 times a week. Thank God I do not have a fear of needles.
My Neurologist's nurse told me a few things to be aware of, that I was not to take a bath (showers only), to avoid extreme heat or cold (in Winter, do not go outside unless absolutely necessary, in the Summer also for obvious reasons), also that I will not be able to drive again or work again. Most of these things I had already come to the realization of, before she told me.
I will tell you honestly, my most pressing problem, is not being able to speak with someone who understands what I'm going through. My wife can see my difficulties, but she cannot know what I'm feeling inside. I have only been dealing with this since July, but I don't know if the symptoms I have are common or uncommon, if you know what I mean. I have researched MS and I have practically all symptoms noted and a few not noted, as well. I'm not saying that my "brand of suffering" is any worse, than anyone else who has MS, frankly because I don't know. The physical problems do not bother me as much as the mental ones. The lack of cognitive function hits me deeply, because I'm a writer, I write poetry, I have been writing since I was 4 years old, now I cannot. The lack of concentration, short attention span, short-term memory loss, inability to stay on task, inability to stay focused for the period needed to begin and finish a project, etc. Of all the things MS has "taken from me", this is the worst, it has taken one of my God-given gifts, my mind. I can handle not being able to work again (I can find alternatives to have sufficient income to survive), I can handle not being able to drive again, I have always taken showers (instead of a bath), I can handle the physical pain, fatigue, black-outs, etc., but to lose my ability to write poems, that hurts more than all the rest combined.
Can I please ask you a question? Where can I find a "mentor", someone I can talk to about all this? Someone who also has MS, that can honestly relate to what I'm dealing with. I had hoped, by joining this forum, I would find the outlet I desperately seek, but as of yet, I have not found it here. This website is a wonderful source of information (please don't get me wrong, I'm not criticizing the site in this respect), but I have yet to find people I can speak to, on a daily basis if need be, if you know what I mean. Am I asking too much from this site, have I misunderstood this website's purpose?
I have dealt with medical situations all my life, I have been in the hospital (or outpatient) for more than 30 procedures during my lifetime, so I'm not unfamiliar with medical situations. However, I have not dealt with something that attacks your entire body, both physically and mentally.
I want to know my "enemy" like "the back of my hand", because I believe only then will I have the "upper-knowledgeable-hand". It's easier to deal with a situation, when you know more about the situation.
I wake up in pain, from the MS hug, etc., I hurt during the night trying to get to sleep, my entire day is spent in physical pain (of one sort or another), I'm not mentally "sleepy" until late in the morning, 6 am or later, but I usually will attempt to sleep for 5-8 hours.
I apologize, you don't need to know my problems, in depth, you have enough of your own, please forgive me, but you can see I have the need to speak to someone, anyone, who will listen and understands. Can you please direct me, even if it's just searching the Internet with more specific precision.
Thank you for your time, consideration, and cooperation, I truly appreciate it.
Take care and may God bless, you and yours.
Socrates2k1
As my wife now says, we are glad to know I have MS (because we now know for certain what it is), and we are also angry because I have MS.
I'm also a cancer survivor (TC - testicular cancer), I have NASH (Nonalcoholic Steatohepatitis), and I have Gilbert's Syndrome, so this just adds insult to injury, if you know what I mean.
My MRI in November revealed multiple cysts (previously only one walnut-sized) and more than 16 lesions (previously 12-16).
I'm not sure what this medicine (Rebif) will be able to do, to help me with my MS symptoms, but I'm sure it can't hurt (unless I'm allergic to it).
My Neurologist didn't specify which type of MS he believes I have, but I guess that will take some time, watching its' progression.
After reading about some of the other medications I could be taking, Rebif doesn't sound too bad, since it's in a shot form taken 3 times a week. Thank God I do not have a fear of needles.
My Neurologist's nurse told me a few things to be aware of, that I was not to take a bath (showers only), to avoid extreme heat or cold (in Winter, do not go outside unless absolutely necessary, in the Summer also for obvious reasons), also that I will not be able to drive again or work again. Most of these things I had already come to the realization of, before she told me.
I will tell you honestly, my most pressing problem, is not being able to speak with someone who understands what I'm going through. My wife can see my difficulties, but she cannot know what I'm feeling inside. I have only been dealing with this since July, but I don't know if the symptoms I have are common or uncommon, if you know what I mean. I have researched MS and I have practically all symptoms noted and a few not noted, as well. I'm not saying that my "brand of suffering" is any worse, than anyone else who has MS, frankly because I don't know. The physical problems do not bother me as much as the mental ones. The lack of cognitive function hits me deeply, because I'm a writer, I write poetry, I have been writing since I was 4 years old, now I cannot. The lack of concentration, short attention span, short-term memory loss, inability to stay on task, inability to stay focused for the period needed to begin and finish a project, etc. Of all the things MS has "taken from me", this is the worst, it has taken one of my God-given gifts, my mind. I can handle not being able to work again (I can find alternatives to have sufficient income to survive), I can handle not being able to drive again, I have always taken showers (instead of a bath), I can handle the physical pain, fatigue, black-outs, etc., but to lose my ability to write poems, that hurts more than all the rest combined.
Can I please ask you a question? Where can I find a "mentor", someone I can talk to about all this? Someone who also has MS, that can honestly relate to what I'm dealing with. I had hoped, by joining this forum, I would find the outlet I desperately seek, but as of yet, I have not found it here. This website is a wonderful source of information (please don't get me wrong, I'm not criticizing the site in this respect), but I have yet to find people I can speak to, on a daily basis if need be, if you know what I mean. Am I asking too much from this site, have I misunderstood this website's purpose?
I have dealt with medical situations all my life, I have been in the hospital (or outpatient) for more than 30 procedures during my lifetime, so I'm not unfamiliar with medical situations. However, I have not dealt with something that attacks your entire body, both physically and mentally.
I want to know my "enemy" like "the back of my hand", because I believe only then will I have the "upper-knowledgeable-hand". It's easier to deal with a situation, when you know more about the situation.
I wake up in pain, from the MS hug, etc., I hurt during the night trying to get to sleep, my entire day is spent in physical pain (of one sort or another), I'm not mentally "sleepy" until late in the morning, 6 am or later, but I usually will attempt to sleep for 5-8 hours.
I apologize, you don't need to know my problems, in depth, you have enough of your own, please forgive me, but you can see I have the need to speak to someone, anyone, who will listen and understands. Can you please direct me, even if it's just searching the Internet with more specific precision.
Thank you for your time, consideration, and cooperation, I truly appreciate it.
Take care and may God bless, you and yours.
Socrates2k1
Hi Socrates, welcome to this side of the mountain - I'm glad for you that it wasn't a long climb to get here. Six months is a pretty good resolution to getting a dx.
Sometimes it takes being agressive to get answers - its good that your wife picked up the phone and called.
I believe each of the dmd manufacturers have a program to help with the costs of the drug if you don't have insurance. I hate to hear that your insurance has lapsed. This MiSerable disease can take away so many things.
I'm so sorry that you officially have MS, am I remembering that this was accidentally found?
There is lots of info here about rebif and how best to take it to control side effects if you need to know more.
Welcome to the club!
Lulu
Sometimes it takes being agressive to get answers - its good that your wife picked up the phone and called.
I believe each of the dmd manufacturers have a program to help with the costs of the drug if you don't have insurance. I hate to hear that your insurance has lapsed. This MiSerable disease can take away so many things.
I'm so sorry that you officially have MS, am I remembering that this was accidentally found?
There is lots of info here about rebif and how best to take it to control side effects if you need to know more.
Welcome to the club!
Lulu
My Neurologist left town, after I had my spinal tap and blood tests, and did not return until December 7th. I had not heard from his office, since his return and my health insurance is now lapsed so my wife called his office yesterday, December 22nd.
My Neurologist's nurse confirmed that I do in fact have MS, so that is a blessing finding out within 6 months of presentation. His nurse also asked if I was currently taking any medication for MS. We informed them that we no longer have insurance, but also that my Neurologist had yet to prescribe any Rx. They told me they with get me started on Rx right away and that because I did not have insurance, it would be of little or no cost to me. So, now I know for certain I have MS, though I cannot tell you what form. I will begin taking a new Rx, after Christmas, called Rebif.
My Neurologist's nurse confirmed that I do in fact have MS, so that is a blessing finding out within 6 months of presentation. His nurse also asked if I was currently taking any medication for MS. We informed them that we no longer have insurance, but also that my Neurologist had yet to prescribe any Rx. They told me they with get me started on Rx right away and that because I did not have insurance, it would be of little or no cost to me. So, now I know for certain I have MS, though I cannot tell you what form. I will begin taking a new Rx, after Christmas, called Rebif.
I understand your confusion because I'm confused as well.
Frankly, the VEP (the checkerboard test) and the LP can NOT rule out MS. It can be used as evidence to say that you have MS if you come up positive in these test, but a negative result in these test does NOT rule out MS.
A VEP test will pick up on any damage with the optical nerve that often occurs because of optical neuritis (ON) or other demyelinating events along the Optic Nerve, or further back along the optic pathways. But not everyone who has MS has had ON, therefore, some people will be positive on the VEP test, others will not. A spinal tap neither rules-in nor rules-out MS. It's used as a tool.
I hope your doctor understands these concepts..that you don't have to have a positive LP, or a positive VEP, to have MS. There is many forum members who have been DX without an LP or a positive VEP.
I would get a copy of your MRI reports to find out exactly what is going on. Hopefully the radiologist has list the specifics as far as lesions size, location, and new ones compared to the old scan. If your neuro does not DX you with the evidence you have, I would seek a second opinion ASAP with a MS specialist.
Take Care
Good Luck
Frankly, the VEP (the checkerboard test) and the LP can NOT rule out MS. It can be used as evidence to say that you have MS if you come up positive in these test, but a negative result in these test does NOT rule out MS.
A VEP test will pick up on any damage with the optical nerve that often occurs because of optical neuritis (ON) or other demyelinating events along the Optic Nerve, or further back along the optic pathways. But not everyone who has MS has had ON, therefore, some people will be positive on the VEP test, others will not. A spinal tap neither rules-in nor rules-out MS. It's used as a tool.
I hope your doctor understands these concepts..that you don't have to have a positive LP, or a positive VEP, to have MS. There is many forum members who have been DX without an LP or a positive VEP.
I would get a copy of your MRI reports to find out exactly what is going on. Hopefully the radiologist has list the specifics as far as lesions size, location, and new ones compared to the old scan. If your neuro does not DX you with the evidence you have, I would seek a second opinion ASAP with a MS specialist.
Take Care
Good Luck
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
