Aa
What a day! My MS Specialist Appointment, by Kathy
To start with, all that carefully prepared paperwork that I agonized over a perfected? This morning I was thinking of re-doing one page, as OHSU had sent me two new patient packets. I got out the empty one, looking at my masterpiece, and decided I didn't have time to make the change, so I put the packet away. Apparently, the wrong one!
The traffic was much lighter than I expected, so I arrived pretty early, and decided to go through my notes and stuff to refresh my memory. I pulled out the new patient packet, and it was BLANK!!!!! I whipped out a pen, and started filling it out. I found out my memory is doing pretty good, and my notebook I put together was a VERY GOOD IDEA!
Dr. Y. was very pleasant, thorough in questioning me about my symptoms, injuries, family history, my health history, etc. Her neuro exam started out better than any before her had been, but then she skipped the Romberg, had me do about four tandem steps, four steps on my toes, two on my heels, and skipped a couple things that other doctor's had done.
All of this, mostly the questions, took quite a while. She then took four MRI's I had brought, two brain and two spine (one a 3T). She came back in 15 minutes and said that my MRIs really don't show anything consistant with MS, and my neuro exam was relatively normal (darn, I should have taken the hot bath, vacuumed, and had a latte!), and that she thought that I have "Small Vessel Ischemic Disease" and that I should start taking daily aspirin, eat a low fat diet, exercise, etc. Now, I had already told her that my blood pressure is low, my cholesterol has been great for years, never had diabetes, all that good stuff. She said that I could follow up with my last neurologist, who I had to tell her had said that I had needed no further neurological testing and didn't want to see me again.
I told her that I had requested to see Dr. D., who had reviewed my chart and decided that I needed to see Dr. Y. She hemmed and hawwed about scheduling me with Dr.D.
She said that my heart arrythmias could be causing tiny little strokes. I had PSVT, and occasionally have a few PVCs, PACs, or have a mild sinus tachycardia. I said, OK, I'll take the aspirin, I would exercise more if I wasn't suffering from this fatigue, dizziness, tremors, lack of balance, bladder spasm/tingling/buzzing "down there".
I also asked her about the thoracic MRI that Dr. C. had said had a "patchy area" that could be MS or artifact, and that Dr. H. had looked at and said there was definitely something there. She seemed a little flustered, and said that she could have their radiologists review the MRIs, to double check. I had to leave my MRIs for her to copy, but If OHSU loses them, I can always go get new copies. Hmm, think she didn't look real close? I don't think she read the report.
Then I asked her if those symptoms mentioned above could be caused by those lesions caused by these miniature strokes. She hmmm'd, suggested it might be possible, but not real likely. She decided that I should see a (female!) urologist for testing to see if my symptoms there are neurogenic. And to send me for a thyroid antibodies test.
She then asked me if I had ever had a brain MRA (no) or a neck ultrasound (no). Now I'm being scheduled for a brain and neck MRA. Oh, and Dr. Y. decided that I should have a follow-up with her in three months, so she can go over the results of the MRA and the neuro urologicical testing
The cool part is that I took the advice I learned here; don't act like I know too much, respect her ego, listen, then ask questions that lead to more answers (or confusion, sometimes, hee hee), and further testing to find out where the heck these symptoms are coming from. I stayed calm and level even when she sounded like neuro #1 for a minute there, and kept asking respectful questions until I got somewhere.
I did, at the end, let some of my knowledge of MRI strengths and the difficulty of diagnosing MS (that part I think she actually appreciated). She looked up in surprise a few times, but in a good way. She even smiled when I showed her my picture montage of what I'm losing by suffering from these symptoms; the trips I've been on, me snorkling for the first time, ticket stubs from concerts, sporting events, golf tournaments, Cirque de Soleil shows, etc. Best of all the picture of me at my largest right next to me in 2005, wearing clothes 7 sizes smaller.
So, all in all, it wasn't bad. No diagnosis but a guess, but further testing to rule out some more possibilities. OK, if I am having lots of mini strokes, I might pitch a fit. But heck, with so many people praying for me and wishing me well, I'm sure I'll be just fine.
This took longer to write than I meant, because I got a call from my new neurosurgeon's office who is going to do a discogram on me on next Monday, to see where my lumbar pain and radiculopathy are coming from so we can get insurance to cover a minimally invasive procedure to reduce at least some of my pain. The woman went over my entire medical history. I think I'll be able to recite it in my sleep, soon!
Anyway, this is too long, and some of you are asleep by now. Sweet dreams.
Much love,
Kathy
The traffic was much lighter than I expected, so I arrived pretty early, and decided to go through my notes and stuff to refresh my memory. I pulled out the new patient packet, and it was BLANK!!!!! I whipped out a pen, and started filling it out. I found out my memory is doing pretty good, and my notebook I put together was a VERY GOOD IDEA!
Dr. Y. was very pleasant, thorough in questioning me about my symptoms, injuries, family history, my health history, etc. Her neuro exam started out better than any before her had been, but then she skipped the Romberg, had me do about four tandem steps, four steps on my toes, two on my heels, and skipped a couple things that other doctor's had done.
All of this, mostly the questions, took quite a while. She then took four MRI's I had brought, two brain and two spine (one a 3T). She came back in 15 minutes and said that my MRIs really don't show anything consistant with MS, and my neuro exam was relatively normal (darn, I should have taken the hot bath, vacuumed, and had a latte!), and that she thought that I have "Small Vessel Ischemic Disease" and that I should start taking daily aspirin, eat a low fat diet, exercise, etc. Now, I had already told her that my blood pressure is low, my cholesterol has been great for years, never had diabetes, all that good stuff. She said that I could follow up with my last neurologist, who I had to tell her had said that I had needed no further neurological testing and didn't want to see me again.
I told her that I had requested to see Dr. D., who had reviewed my chart and decided that I needed to see Dr. Y. She hemmed and hawwed about scheduling me with Dr.D.
She said that my heart arrythmias could be causing tiny little strokes. I had PSVT, and occasionally have a few PVCs, PACs, or have a mild sinus tachycardia. I said, OK, I'll take the aspirin, I would exercise more if I wasn't suffering from this fatigue, dizziness, tremors, lack of balance, bladder spasm/tingling/buzzing "down there".
I also asked her about the thoracic MRI that Dr. C. had said had a "patchy area" that could be MS or artifact, and that Dr. H. had looked at and said there was definitely something there. She seemed a little flustered, and said that she could have their radiologists review the MRIs, to double check. I had to leave my MRIs for her to copy, but If OHSU loses them, I can always go get new copies. Hmm, think she didn't look real close? I don't think she read the report.
Then I asked her if those symptoms mentioned above could be caused by those lesions caused by these miniature strokes. She hmmm'd, suggested it might be possible, but not real likely. She decided that I should see a (female!) urologist for testing to see if my symptoms there are neurogenic. And to send me for a thyroid antibodies test.
She then asked me if I had ever had a brain MRA (no) or a neck ultrasound (no). Now I'm being scheduled for a brain and neck MRA. Oh, and Dr. Y. decided that I should have a follow-up with her in three months, so she can go over the results of the MRA and the neuro urologicical testing
The cool part is that I took the advice I learned here; don't act like I know too much, respect her ego, listen, then ask questions that lead to more answers (or confusion, sometimes, hee hee), and further testing to find out where the heck these symptoms are coming from. I stayed calm and level even when she sounded like neuro #1 for a minute there, and kept asking respectful questions until I got somewhere.
I did, at the end, let some of my knowledge of MRI strengths and the difficulty of diagnosing MS (that part I think she actually appreciated). She looked up in surprise a few times, but in a good way. She even smiled when I showed her my picture montage of what I'm losing by suffering from these symptoms; the trips I've been on, me snorkling for the first time, ticket stubs from concerts, sporting events, golf tournaments, Cirque de Soleil shows, etc. Best of all the picture of me at my largest right next to me in 2005, wearing clothes 7 sizes smaller.
So, all in all, it wasn't bad. No diagnosis but a guess, but further testing to rule out some more possibilities. OK, if I am having lots of mini strokes, I might pitch a fit. But heck, with so many people praying for me and wishing me well, I'm sure I'll be just fine.
This took longer to write than I meant, because I got a call from my new neurosurgeon's office who is going to do a discogram on me on next Monday, to see where my lumbar pain and radiculopathy are coming from so we can get insurance to cover a minimally invasive procedure to reduce at least some of my pain. The woman went over my entire medical history. I think I'll be able to recite it in my sleep, soon!
Anyway, this is too long, and some of you are asleep by now. Sweet dreams.
Much love,
Kathy
Thank you, Wonko. I don't know if I'm brave, or just stubborn. Probably both. And determined to take as good of care of this body as is possible so I can live this life to the fullest.
Thank you, Quix. I know that you've been only able to post a few times a day, and really appreciate your taking the time to respond. As Deb said, my case is complex. I saw you write on one thread that the people had gotten almost all the answers themselves, and before long you won't be needed.
We'll always need you. Not just because of your medical knowledge, but because of your quirky sense of humor and kindness, gentleness, and the ability to kick butt! Your unique perspective as a doctor that has been treated horribly by doctors lends a weird type of normalcy to all our bad experiences. You understand. We aren't all depressed, hormonal, stressed, making things up for attention, exaggerating our symptoms; all those negatives we have been told as a way of dismissing us rather than really looking for what is wrong.
I'll go copy, paste, and print the statement that you gave us a link to.
Whenever you have time to answer some of my other questions is just fine by me. You have your life to live as well as a lot of others wanting and/or needing attention. I'm a pretty tough and resourceful cookie; I'll find my way. I just really respect your opinion and enjoy reading what you have to say.
Kathy
Thank you, Quix. I know that you've been only able to post a few times a day, and really appreciate your taking the time to respond. As Deb said, my case is complex. I saw you write on one thread that the people had gotten almost all the answers themselves, and before long you won't be needed.
We'll always need you. Not just because of your medical knowledge, but because of your quirky sense of humor and kindness, gentleness, and the ability to kick butt! Your unique perspective as a doctor that has been treated horribly by doctors lends a weird type of normalcy to all our bad experiences. You understand. We aren't all depressed, hormonal, stressed, making things up for attention, exaggerating our symptoms; all those negatives we have been told as a way of dismissing us rather than really looking for what is wrong.
I'll go copy, paste, and print the statement that you gave us a link to.
Whenever you have time to answer some of my other questions is just fine by me. You have your life to live as well as a lot of others wanting and/or needing attention. I'm a pretty tough and resourceful cookie; I'll find my way. I just really respect your opinion and enjoy reading what you have to say.
Kathy
Hi, I will weigh in on this. I've been distracted lately and only posting a couple times a day.
This thread has gotten long, but if you start a new one a lot of thoughts will be lost. I will try to answer this one when I can.
My first thought is the one that comes up over and over again. And I think this doctor, who kept trying to get you out of her office, but kept being bothered by little things you brought up - I think she did see the very basic problem that I have tried to point out time after time after time.
1) When they did HUGE numbers of MRIs on people of all ages, they found that, as people age, they get they small T2 hyperintensities. Rare people in their 20's, some in their 30's get them. They begin appearing more commonly in people in their 40's and by the 60's most (but not people have them). Okay.
2) But, these were lesions found in otherwise healthy people with NO neurologic symptoms or problems. So we know that, for the most part, these lesions ARE NOT SYMPTOMATIC.
3) This kind of lesion can be seen in MS. Can they be just small MS lesions. If some MS lesions are so small as to be invisible on the MRI and some are huge, we have to assume that they can occur at every size inbetween.
4) So, when a person comes in with symptoms that are highly suggestive of MS, can you really discount the lesions as "normal for age?" The lesions that are called "normal for age" or "everyone has those" or "small vessel ischemic disease" (aging) have been shown to cause no symptoms in the younger person. Why do you now say that the person with symptoms has no lesions?
That leap of connecting two different situations just baffles me. Someone has symptoms suggestive of lesions in their brain and/or you find signs on their exam that they have lesions in their brain and you do an MRI to see if there are lesions in the brain. AND YOU FIND LESIONS IN THE BRAIN.!! How in tarnation can you not look at the lesions seriously????! Yes, it is possible that the little lesions seen could be normal for age, but that should never be the first assumption! You found what you were looking for. Yes, the lesions may be smaller and mostly in a slightly different position, but how can you assume they are not important?
Look at it this way.
A shop owner comes in and finds a broken display case and a lot of merchandise missing from when he locked up the night before. He calls the police. They come out and verify the damage and missing stuff. They decide to investigate the scene to see if there is any evidence of a break in. The officer looks at all the doors and windows. He finds a window that has very recent scuff marks and damage to the sill. He jiggles the window and finds he can open it, even though the lock is locked. He tells the main detective. It looks like they came in through the window. The detectice says, " Oh, that can't be how they got in. A lot of the old stores along here have windows that are loose." He turns to the shop owner and says, "There is no sign that any one came in here and took stuff." I don't know what happedened here. Maybe you took it yourself." And the police leave. Huh??
Kathy, your doctor did acknowledge that if the lesions were from "small vessel ischemic disease" (aging of the vessels or high blood pressure or migraines) you wouldn't have the symptoms you do. So, doesn't that call into question that those lesions might really be due to something else?
Now, I found something that say exactly what I have been saying for --- well, forever. I realize that this is not a scientific study. It is just a statement by a neurologist on this topic. And he says it a lot better than I have. I would like everyone to copy and past this link and read this doctor's first bit.
http://braindiseases.wordpress.com/2008/05/15/mri-white-matter-lesions-does-it-represent-ms/
Kathy, I'll try to get to some of the other questions later. I just don't seem to have much time per day for writing.
Quix
This thread has gotten long, but if you start a new one a lot of thoughts will be lost. I will try to answer this one when I can.
My first thought is the one that comes up over and over again. And I think this doctor, who kept trying to get you out of her office, but kept being bothered by little things you brought up - I think she did see the very basic problem that I have tried to point out time after time after time.
1) When they did HUGE numbers of MRIs on people of all ages, they found that, as people age, they get they small T2 hyperintensities. Rare people in their 20's, some in their 30's get them. They begin appearing more commonly in people in their 40's and by the 60's most (but not people have them). Okay.
2) But, these were lesions found in otherwise healthy people with NO neurologic symptoms or problems. So we know that, for the most part, these lesions ARE NOT SYMPTOMATIC.
3) This kind of lesion can be seen in MS. Can they be just small MS lesions. If some MS lesions are so small as to be invisible on the MRI and some are huge, we have to assume that they can occur at every size inbetween.
4) So, when a person comes in with symptoms that are highly suggestive of MS, can you really discount the lesions as "normal for age?" The lesions that are called "normal for age" or "everyone has those" or "small vessel ischemic disease" (aging) have been shown to cause no symptoms in the younger person. Why do you now say that the person with symptoms has no lesions?
That leap of connecting two different situations just baffles me. Someone has symptoms suggestive of lesions in their brain and/or you find signs on their exam that they have lesions in their brain and you do an MRI to see if there are lesions in the brain. AND YOU FIND LESIONS IN THE BRAIN.!! How in tarnation can you not look at the lesions seriously????! Yes, it is possible that the little lesions seen could be normal for age, but that should never be the first assumption! You found what you were looking for. Yes, the lesions may be smaller and mostly in a slightly different position, but how can you assume they are not important?
Look at it this way.
A shop owner comes in and finds a broken display case and a lot of merchandise missing from when he locked up the night before. He calls the police. They come out and verify the damage and missing stuff. They decide to investigate the scene to see if there is any evidence of a break in. The officer looks at all the doors and windows. He finds a window that has very recent scuff marks and damage to the sill. He jiggles the window and finds he can open it, even though the lock is locked. He tells the main detective. It looks like they came in through the window. The detectice says, " Oh, that can't be how they got in. A lot of the old stores along here have windows that are loose." He turns to the shop owner and says, "There is no sign that any one came in here and took stuff." I don't know what happedened here. Maybe you took it yourself." And the police leave. Huh??
Kathy, your doctor did acknowledge that if the lesions were from "small vessel ischemic disease" (aging of the vessels or high blood pressure or migraines) you wouldn't have the symptoms you do. So, doesn't that call into question that those lesions might really be due to something else?
Now, I found something that say exactly what I have been saying for --- well, forever. I realize that this is not a scientific study. It is just a statement by a neurologist on this topic. And he says it a lot better than I have. I would like everyone to copy and past this link and read this doctor's first bit.
http://braindiseases.wordpress.com/2008/05/15/mri-white-matter-lesions-does-it-represent-ms/
Kathy, I'll try to get to some of the other questions later. I just don't seem to have much time per day for writing.
Quix
I've been having a lot of those days on which I worry I'm going to fall into the groove my mental pacing is leaving in my mind!
I have a person in my life who took the time to talk to me about how once your trust is bruised by a doctor, it can take a long time to recover from it. I'm not as eloquent as my friend, but you've gotta know how much bravery it took for you to go to that appointment.
It may take some time for you to know what is right for you to do next. We'll be here for you as you work that out!
I have a person in my life who took the time to talk to me about how once your trust is bruised by a doctor, it can take a long time to recover from it. I'm not as eloquent as my friend, but you've gotta know how much bravery it took for you to go to that appointment.
It may take some time for you to know what is right for you to do next. We'll be here for you as you work that out!
Thanks for your suggestion. It's a good one, but I just don't have the energy to go through all of that right now. I feel like some of the people here have heard my stuff so much that I should give it a rest.
When I'm rested up, though, I'll try your suggestion. We have so many new people all the time, and maybe seeing it all together (I'll try to not be too wordy!) will help clarify it for those who have read my ups and downs and, as you say, turn on some lightbulbs.
Just got the results of my thyroid antibodies test; normal.
Thyroglobulin antibody, 1.5, and Thyroid Pyroxidase AB .5
You're right, my case is complex. :o)
Thanks again!
Kathy
When I'm rested up, though, I'll try your suggestion. We have so many new people all the time, and maybe seeing it all together (I'll try to not be too wordy!) will help clarify it for those who have read my ups and downs and, as you say, turn on some lightbulbs.
Just got the results of my thyroid antibodies test; normal.
Thyroglobulin antibody, 1.5, and Thyroid Pyroxidase AB .5
You're right, my case is complex. :o)
Thanks again!
Kathy
You may want to start a fresh thread. I would highlight some of your symptoms, history, and post the report of the results of your MRI, again. I bet there are some people who have had some experience with this and can help you out. I think that your case is complex and putting all of this info together for someone, may turn on some lightbulbs.
These symptoms are nothing to brush off and you deserve some answers.
Deb
These symptoms are nothing to brush off and you deserve some answers.
Deb
I'm sorry this thread is getting so wordy, perhaps I should start a new one, because I have been going over this and wondering about so many things.
I looked up "small vessel ischemic disease", and it really doesn't seem to fit me at all, from everything I've read so far. Does anyone know anyone that actually has it?
I posted a question on a heart forum and received no response.
Are my rather mild arrythmias enough to cause any problems?
How do I just ignore my symptoms? They are life-altering, if mostly "only" sensory.
I guess I'm not handling this as well as I thought. I will be very glad if the brain and neck MRA show what I suspect; that there is nothing wrong with my blood vessels.
What do I do if there is?
What do I ask for next if there isn't?
Will the urologist be able to pick up if my symptoms are neurogenic, if the buzzing/tingling isn't actually flaring up, from just the frequency, urgency, stop and start or long -drawn- out urine flow?
I wish Quix would have weighed in on all of this; maybe she'll get around to it today. I'm curious as to what she thinks of the arrhythmia throwing off tiny clots causing ischemic lesion theory, as well as all the rest.
Oh, fiddlesticks, I need to get out of my head! I've just waited so long for this appointment, and I guess I really did hope for more.
Is there anyone in the world that thinks I might have MS? Aside from the neuroradiologist that read my brain MRI as most likely to be MS? Twice!
OK, deep breath....
If anyone has any thought about my wonderings, please chime in. I'm going to take a shower, and if that clears my head enough, go buy some fresh veggies and a Hermiston watermelon (the best, for those who don't know!). There's this cool farm place not far from here. I will just ignore the fresh fruit cobblers they have for sale there (I tried the cherry, MMMMMmmmmm)!
Kathy
I looked up "small vessel ischemic disease", and it really doesn't seem to fit me at all, from everything I've read so far. Does anyone know anyone that actually has it?
I posted a question on a heart forum and received no response.
Are my rather mild arrythmias enough to cause any problems?
How do I just ignore my symptoms? They are life-altering, if mostly "only" sensory.
I guess I'm not handling this as well as I thought. I will be very glad if the brain and neck MRA show what I suspect; that there is nothing wrong with my blood vessels.
What do I do if there is?
What do I ask for next if there isn't?
Will the urologist be able to pick up if my symptoms are neurogenic, if the buzzing/tingling isn't actually flaring up, from just the frequency, urgency, stop and start or long -drawn- out urine flow?
I wish Quix would have weighed in on all of this; maybe she'll get around to it today. I'm curious as to what she thinks of the arrhythmia throwing off tiny clots causing ischemic lesion theory, as well as all the rest.
Oh, fiddlesticks, I need to get out of my head! I've just waited so long for this appointment, and I guess I really did hope for more.
Is there anyone in the world that thinks I might have MS? Aside from the neuroradiologist that read my brain MRI as most likely to be MS? Twice!
OK, deep breath....
If anyone has any thought about my wonderings, please chime in. I'm going to take a shower, and if that clears my head enough, go buy some fresh veggies and a Hermiston watermelon (the best, for those who don't know!). There's this cool farm place not far from here. I will just ignore the fresh fruit cobblers they have for sale there (I tried the cherry, MMMMMmmmmm)!
Kathy
Thanks, I'll look into whether Dr. Delashaw does the procedure I'm looking at, and see what my chances are of having him do it. I have no idea how to choose a neurosurgeon, and I think it's reeeeeeallly important to have a good one! I kind of like nice doctors, too.
Kathy
Kathy
Craig's endocrinologist at OHSU loved Delashaw. He is booked well in advance. He is very nice. So that's all I got from the visit. He does pituitary surgeries too.
Elaine
Elaine
Next time my cat is driving me crazy, I will think of you and your three boys, and be at peace with my one self-centered boy-cat. I drive him to Vet appointments, but not often. I buy him expensive food and medicine, but that pales in comparison to keeping three boys in Nikes and whatever "cool" jeans are now, school supplies, etc., etc.!
Enjoy your ME time!
Kathy
Enjoy your ME time!
Kathy
I am exactly like you on this one! I will absolutely drive myself nuts worring about the results, which is usuall only a week or two but a month is a little too much worry for me to handle right now.
My kids will be back in school next week, I have three boys ages 16, 13, and 8. I have been handling a lot of there check ups, vision, dentist, phsyicals, ect in the last few weeks. And also getting school suppies, clothes and shoes. I went yesterday to register them for school. So much on my plate right now. So since I seem stable, and really have been for two years now, I think it is safe to wait until Sept 11th on the MRI. But if I had any new problem arise, God forbid, I would go in sooner!!
Another good thing is this will be my sixth brain scan. The first one was in Sept, 2006, so this one will mark exactly two years since they found the 10 lesions. All other repeat scans have shown no change.
With all of my kids going back to school, this will give me time to concentrate on me again!! DID I SAY ME !!! I had forgotten that there was a ME !! LOL!!!!!!!! Anyway, I really hope you get some answers from this new neuro and she gets to the bottom of what is going on with you soon!!
~Santana~
My kids will be back in school next week, I have three boys ages 16, 13, and 8. I have been handling a lot of there check ups, vision, dentist, phsyicals, ect in the last few weeks. And also getting school suppies, clothes and shoes. I went yesterday to register them for school. So much on my plate right now. So since I seem stable, and really have been for two years now, I think it is safe to wait until Sept 11th on the MRI. But if I had any new problem arise, God forbid, I would go in sooner!!
Another good thing is this will be my sixth brain scan. The first one was in Sept, 2006, so this one will mark exactly two years since they found the 10 lesions. All other repeat scans have shown no change.
With all of my kids going back to school, this will give me time to concentrate on me again!! DID I SAY ME !!! I had forgotten that there was a ME !! LOL!!!!!!!! Anyway, I really hope you get some answers from this new neuro and she gets to the bottom of what is going on with you soon!!
~Santana~
I took so long writing my last answer, that I missed your post!
Dr. Y. mentioned something about taking a biopsy of a lesion might show more of which kind it is, but that really isn't an option, now, is it? Sheesh!
It would be hard for me to reschedule an MRI, but then, if I didn't have a doctor's help to interpret it, I would be going over the report, looking at the MRI on my computer, and driving myself crazy trying to figure it out, so I'd say you were pretty wise to reschedule if you are anything like me!
I'll stay postive and hopeful. I have such a great support system here!
Thanks,
Kathy
Dr. Y. mentioned something about taking a biopsy of a lesion might show more of which kind it is, but that really isn't an option, now, is it? Sheesh!
It would be hard for me to reschedule an MRI, but then, if I didn't have a doctor's help to interpret it, I would be going over the report, looking at the MRI on my computer, and driving myself crazy trying to figure it out, so I'd say you were pretty wise to reschedule if you are anything like me!
I'll stay postive and hopeful. I have such a great support system here!
Thanks,
Kathy
It is frustrating to have no explanation for my symptoms, like they aren't that important since I am still functional. To a degree. I didn't want to mention the days (many) that I choose not to drive because I will not endanger myself or others and when I'm very fatigued, dizzy, or off-balance, I'm always afraid it could affect my driving. I don't want to mention this on the off chance that I don't need a diagnosis to have my driving privileges curtailed. I love and need my little car on good days.
Neuro # 1 went for the "small vessel ischemic disease" and neuro #2 kept suggesting that I take an aspirin every day and get my cholesterol checked (even though I told her that my cholesterol had been excellent for years). At least my asking questions about whether it could cause my symptoms got her to order new tests for me. You should have seen her thinking out loud as to whether those ischemic lesions could interfere with normal functioning.
She thought that perhaps my waking up with tremors and an intense occipital headache could have been from and ischemic event. I had my first brain MRI a couple weeks later; wouldn't that have shown an event of that magnitude? That wouldn't have been a little white spot, I don't think.
She said that my symptoms come on to suddenly to be MS; waking up with tremors, sharp pains in bladder then buzzing/tingling sensation, etc. At least she is sending me to the urologist, since that started with increased frequency, urgency, and OMG I don't know if I'll make it kind of symptoms. The headache and tremors could have began so slowly that I didn't notice, worsening while I slept so that it seemed dramatic. Or, I could be atypical. Or, I could have something totally different going on, that we will never no if neuros keep saying you don't have any of the usual suspects, buh bye!
If she continues to think that my neurological symptoms aren't related to MS and I insist that they are bothersome enough to be further investigated, I will probably be seeing Dr. D., who Aura3 here on the forum told me about, who I asked to see in the first place.
Elaine, I have been well forewarned about the pain that the discogram will cause. They'll use Versed during the procedure, I'll take Vicodin before-hand, and have some for after, as the whole thing will take hours, since I go over to the hospital for a CT after.
This isn't at OHSU, thankfully, its at a spine center near my best friend's house, and the hospital is across the street from the spine center. Dr. S. is supposed to be excellent, though simply a "procedure" doctor. I'll follow up with my Sports and Spine doctor, who has an office in the same complex as the spine center. My b.f. will pick me up, take me to the hospital, then take me to her house and make sure I stay down and eat healthy, drink lots of fluid, etc. I'll keep a notepad by me to write down when I take what pain med. I take when.
I'll have ice packs, and food and water in a cooler by my bed, since they say to stay down for at least one day, better two. I can get up to go to the bathroom or to eat. And the pain will be enormous. I actually have a couple heavier duty pain pills left from a surgery a couple years ago, and I have plenty of Vicodin, and some muscle relaxants if my back should spasm.
Is Delashaw a good neurosurgeon? I will need one to do the minimally invasive procedure, either IDET or nucleoplasty or whatever they call it. I've seen many names for what looks like pretty much the same procedure.
I can live through intense pain if it leads to me getting rid of a daily intense pain that interferes with my walking, sitting, being comfortable in just about any position. Who knew that a little disc protrusion could cause so much pain! Though, the radiologist for the other neurosurgeon I saw said there was a piece of an annular tear pushing the nerve root out of place on the other side of the same level than previous radiologist's saw the bulge. He didn't think the minimally invasive procedure would work for me, and didn't do anything more involved.
Thank you for your warning and concern. I really appreciate it, and you.
Kathy
Neuro # 1 went for the "small vessel ischemic disease" and neuro #2 kept suggesting that I take an aspirin every day and get my cholesterol checked (even though I told her that my cholesterol had been excellent for years). At least my asking questions about whether it could cause my symptoms got her to order new tests for me. You should have seen her thinking out loud as to whether those ischemic lesions could interfere with normal functioning.
She thought that perhaps my waking up with tremors and an intense occipital headache could have been from and ischemic event. I had my first brain MRI a couple weeks later; wouldn't that have shown an event of that magnitude? That wouldn't have been a little white spot, I don't think.
She said that my symptoms come on to suddenly to be MS; waking up with tremors, sharp pains in bladder then buzzing/tingling sensation, etc. At least she is sending me to the urologist, since that started with increased frequency, urgency, and OMG I don't know if I'll make it kind of symptoms. The headache and tremors could have began so slowly that I didn't notice, worsening while I slept so that it seemed dramatic. Or, I could be atypical. Or, I could have something totally different going on, that we will never no if neuros keep saying you don't have any of the usual suspects, buh bye!
If she continues to think that my neurological symptoms aren't related to MS and I insist that they are bothersome enough to be further investigated, I will probably be seeing Dr. D., who Aura3 here on the forum told me about, who I asked to see in the first place.
Elaine, I have been well forewarned about the pain that the discogram will cause. They'll use Versed during the procedure, I'll take Vicodin before-hand, and have some for after, as the whole thing will take hours, since I go over to the hospital for a CT after.
This isn't at OHSU, thankfully, its at a spine center near my best friend's house, and the hospital is across the street from the spine center. Dr. S. is supposed to be excellent, though simply a "procedure" doctor. I'll follow up with my Sports and Spine doctor, who has an office in the same complex as the spine center. My b.f. will pick me up, take me to the hospital, then take me to her house and make sure I stay down and eat healthy, drink lots of fluid, etc. I'll keep a notepad by me to write down when I take what pain med. I take when.
I'll have ice packs, and food and water in a cooler by my bed, since they say to stay down for at least one day, better two. I can get up to go to the bathroom or to eat. And the pain will be enormous. I actually have a couple heavier duty pain pills left from a surgery a couple years ago, and I have plenty of Vicodin, and some muscle relaxants if my back should spasm.
Is Delashaw a good neurosurgeon? I will need one to do the minimally invasive procedure, either IDET or nucleoplasty or whatever they call it. I've seen many names for what looks like pretty much the same procedure.
I can live through intense pain if it leads to me getting rid of a daily intense pain that interferes with my walking, sitting, being comfortable in just about any position. Who knew that a little disc protrusion could cause so much pain! Though, the radiologist for the other neurosurgeon I saw said there was a piece of an annular tear pushing the nerve root out of place on the other side of the same level than previous radiologist's saw the bulge. He didn't think the minimally invasive procedure would work for me, and didn't do anything more involved.
Thank you for your warning and concern. I really appreciate it, and you.
Kathy
Well, it sounds like she didn't totally dismiss you and at least she is sending you for test for what she is indicating. It is so agravating to me, trying to understand how they can or cannot tell ichemic lesions from demyelinating lesion.
With me, No one even brought up the possibility of stroke. I had to take the lead and ask to be tested for the clotting disorders, which one, Factor V Leiden was possitive, but with only one copy of the gene the hematologist said it was a minor mutation. He did, however start me on a baby asprin once a day for a precautionary measure.
When I asked my neuro, given this finding, If I could have had a stroke, He quickly said no your lesions do not look ischemic. I said then what do they look like. He said ADEM.
But still I wonder how they can tell one from the other!
I was suposed to go for my fifth repeat brain MRI today, but I reschedualed it for Sept, 11. I did this because my neuro is going on vacation and I can't go in for results until Sept,18. I can't stand a month's wait for the MRI results, so I changed it for a week before I see him. It is just easier for me this way to keep it off of my mind until then.
I hope she finds some answers for you at your next visit with her. Don't lose hope, things will become clear sooner or later!
Hugs,
~Santana~
With me, No one even brought up the possibility of stroke. I had to take the lead and ask to be tested for the clotting disorders, which one, Factor V Leiden was possitive, but with only one copy of the gene the hematologist said it was a minor mutation. He did, however start me on a baby asprin once a day for a precautionary measure.
When I asked my neuro, given this finding, If I could have had a stroke, He quickly said no your lesions do not look ischemic. I said then what do they look like. He said ADEM.
But still I wonder how they can tell one from the other!
I was suposed to go for my fifth repeat brain MRI today, but I reschedualed it for Sept, 11. I did this because my neuro is going on vacation and I can't go in for results until Sept,18. I can't stand a month's wait for the MRI results, so I changed it for a week before I see him. It is just easier for me this way to keep it off of my mind until then.
I hope she finds some answers for you at your next visit with her. Don't lose hope, things will become clear sooner or later!
Hugs,
~Santana~
I am also glad that you are able to go back to her. However, Craig's lesions were always reported by the radiologist as "small vessel ischemic disease" too, and I would always ask the neuro if that disease could cause such extreme neurological deficits. Of course I got no answer.
OHSU also offered to to a discogram way back in 2006 when they were convinced that all his problems were related to pituitary disease and maybe disc problems. However, I never let Craig get it since the MRI's were normal. Please, Kathy, insist on sedatives and /or pain meds before the procedure. OHSU neurosurgeon (Delashaw) admitted to Craig in 2006 that it is a painful procedure.
I don't want to frighten you, but you really should insist on medication prior to the procedure.
Best of Luck with your future tests!!
Elaine
OHSU also offered to to a discogram way back in 2006 when they were convinced that all his problems were related to pituitary disease and maybe disc problems. However, I never let Craig get it since the MRI's were normal. Please, Kathy, insist on sedatives and /or pain meds before the procedure. OHSU neurosurgeon (Delashaw) admitted to Craig in 2006 that it is a painful procedure.
I don't want to frighten you, but you really should insist on medication prior to the procedure.
Best of Luck with your future tests!!
Elaine
Hey Kath -
Well, you sure did expect less, and sound as if you are handling this well. You weren't completely blown off, but you were not offered much help either. Did she say nothing as to what could possibly cause your symptoms? Those quick exams don't sit well w/me either. Mine are quick, and I always think, how can he possibly know what is going on w/me physically with "just this."
I am glad though that you will go back afterall. Maybe some time will reveal more. She'll get to know you better w/more visits, and have a 1st exam to compare futures to. Good luck at the nuerosurgeons. Your doing very well staying positive - not always an easy thing to do.
And, WOO HOO for you shedding 7 sizes, I'm glad she saw those pics. Congrats!
(((hugs)))
Shell
Well, you sure did expect less, and sound as if you are handling this well. You weren't completely blown off, but you were not offered much help either. Did she say nothing as to what could possibly cause your symptoms? Those quick exams don't sit well w/me either. Mine are quick, and I always think, how can he possibly know what is going on w/me physically with "just this."
I am glad though that you will go back afterall. Maybe some time will reveal more. She'll get to know you better w/more visits, and have a 1st exam to compare futures to. Good luck at the nuerosurgeons. Your doing very well staying positive - not always an easy thing to do.
And, WOO HOO for you shedding 7 sizes, I'm glad she saw those pics. Congrats!
(((hugs)))
Shell
thank you, thank you very much! (taking small bow)
I had hoped for more, but kind of expected less, so I'm quite happy to have achieved as much as I did.
Oh, lord, Wonko, how could Fluffy have eaten a virtual mouse! It was here one minute, but now it's gone! Oh, he burped his thanks. (excuse my crass language, please).
I used to think that hot potato was a fun game as a kid, but it got old and stressful real quick, and it's even worse in the adult world, when you're the potato!
Rena, I hope Kayleigh's doing OK, and that the trip is on. You could probably use about a dozen hugs, yourself.
andie, maybe the tide is turning and we here on the forum are actually going to find doctors that help us find answers and ways to feel better. Could it be possible?
We can only hope!
You all have a good night; I'm done in and heading for bed.
Kathy
I had hoped for more, but kind of expected less, so I'm quite happy to have achieved as much as I did.
Oh, lord, Wonko, how could Fluffy have eaten a virtual mouse! It was here one minute, but now it's gone! Oh, he burped his thanks. (excuse my crass language, please).
I used to think that hot potato was a fun game as a kid, but it got old and stressful real quick, and it's even worse in the adult world, when you're the potato!
Rena, I hope Kayleigh's doing OK, and that the trip is on. You could probably use about a dozen hugs, yourself.
andie, maybe the tide is turning and we here on the forum are actually going to find doctors that help us find answers and ways to feel better. Could it be possible?
We can only hope!
You all have a good night; I'm done in and heading for bed.
Kathy
sounds like you had one of the appts I had not too long ago...I felt like I was going to be sent away saying they can't help...but then they decided to relook at things and get more results?? He even said, well, maybe the other Neuro and him have missed something?
Good luck with your other tests and hopefully they will show some results that can give you answers .. take care
andie
Good luck with your other tests and hopefully they will show some results that can give you answers .. take care
andie
While something of a mixed bag, it sounds like you had a productive appointment. Sheesh, last year if someone told me I'd need to prepare for an appt, I wouldn't get it, but I sure do now. I can see from your post how using the forum, keeping track of your records, understanding your goals, and establishing realistic expectations all helped you out today. Someone call Quix! Time to bust out the gold star stickers! (I am such an approval seeker, can ya tell??)
I think being more cautious early on and opening up more once some trust was established was a good move. That's how my first appointment with my current neuro went, but I somehow left that out of my 10 page response to your other post!
I know exactly what it is like to go from a doc who won't even follow up to one that admits that there is no answer, but will continue to tract your progress: You're still up in the air, but at least there is a net. I don't like being the hot potato patient. I had that a few months ago: PCP said it was neurological, neuro said it was emotional, psych. consult said go back to PCP for physical cause, PCP said find another neuro. Such a trip, to be going to all of those appointments, but not feeling like you have any care providers! It sounds like you broke out of that situation!
And it sounds good that she wants to order tests, and send you to other specialists: She's not letting ego get in the way of trying to get new info/ideas about your case.
(& My apologies to Fluffy for the dropped food. I'm dangling a virtual cat toy as an olive branch.)
I think being more cautious early on and opening up more once some trust was established was a good move. That's how my first appointment with my current neuro went, but I somehow left that out of my 10 page response to your other post!
I know exactly what it is like to go from a doc who won't even follow up to one that admits that there is no answer, but will continue to tract your progress: You're still up in the air, but at least there is a net. I don't like being the hot potato patient. I had that a few months ago: PCP said it was neurological, neuro said it was emotional, psych. consult said go back to PCP for physical cause, PCP said find another neuro. Such a trip, to be going to all of those appointments, but not feeling like you have any care providers! It sounds like you broke out of that situation!
And it sounds good that she wants to order tests, and send you to other specialists: She's not letting ego get in the way of trying to get new info/ideas about your case.
(& My apologies to Fluffy for the dropped food. I'm dangling a virtual cat toy as an olive branch.)
Well it sounds as though you handled this appointment very well to me my dear! It definitely doesn't sound as though you are being brushed off with a lame diagnosis and told to get one with it which is a wonderful thing in itself! I hope that these tests that they are still sending you for are going to give them more insight as to what is going on and you get some relief soon!
Lots of Hugs,
Rena
Lots of Hugs,
Rena
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