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Need Opinions...frustrate and scared
Hello everyone. I don't know if any of you remember me or not. I posted here a few times several months ago. I've been lurking a lot lately. My story is so complicated, and I don't know if I have the energy to go into all of it now. Maybe I could find a summary in one of my old posts and link it to this thread?
I have had sx for four years now. The neuros all seem to think MS is the most likely disorder, but no one will dx it. It seems as though they believe I may have a muscular disorder instead. I do have classic heat sensitivity issues (I will get weak and tingly from a hot bath...even my heating pad).I have had several issues of Trigeminal Neuralgia, bladder and bowel incontince, cognitive problems, etc. I've had swallowing issues too. For a week and a half I choked a lot.
My latest MS clinic seems to be a good one. I drove three hours and ended up seeing the director of the clinic. A older man who is well known in research (I thought I was going to see my regular doc?) Anyway, he said it wouldn't be wise to start on treatment when they weren't sure. He said my lesions weren't in typical places for MS (I've been told they were as they are around the ventricles).
I asked about repeating the LP as it had been four years since I had one. He said it likely would be negative. Also all of the evoked testing was done three years ago...wouldn't it be worth it to repeat those.
I guess now I'm getting scared. I have clear progression, but no one is helping me. I'm worried that it may be something worse than MS. I do have a Rheumatologist who has been helpful, but I am thinking about getting a second opinion.
Sorry for the rambling. Thanks for any input.
This community seems so caring, helpful and informative. Hopefully I can be more active here.
I have had sx for four years now. The neuros all seem to think MS is the most likely disorder, but no one will dx it. It seems as though they believe I may have a muscular disorder instead. I do have classic heat sensitivity issues (I will get weak and tingly from a hot bath...even my heating pad).I have had several issues of Trigeminal Neuralgia, bladder and bowel incontince, cognitive problems, etc. I've had swallowing issues too. For a week and a half I choked a lot.
My latest MS clinic seems to be a good one. I drove three hours and ended up seeing the director of the clinic. A older man who is well known in research (I thought I was going to see my regular doc?) Anyway, he said it wouldn't be wise to start on treatment when they weren't sure. He said my lesions weren't in typical places for MS (I've been told they were as they are around the ventricles).
I asked about repeating the LP as it had been four years since I had one. He said it likely would be negative. Also all of the evoked testing was done three years ago...wouldn't it be worth it to repeat those.
I guess now I'm getting scared. I have clear progression, but no one is helping me. I'm worried that it may be something worse than MS. I do have a Rheumatologist who has been helpful, but I am thinking about getting a second opinion.
Sorry for the rambling. Thanks for any input.
This community seems so caring, helpful and informative. Hopefully I can be more active here.
I can see why you are frustrated. All I can say is I know you have the best MS doctors in Indiana. The only other options I can offer would be going to Chicago of the Cleavland Clinic.
Those were to on my list if I didn't get any reasonable answers to what is going on with me. The first neuro I saw thought the lesions were caused by high bp. The second I saw told me I was too stressed by having 7 children.
Ok but I didn't know stress from 7 children can cause ON!! I felt like Dr. Kolar's office was very kind, helpful, and interested in me. They even asked for some sort of time line.
The other neuros didn't want to see the time line. Maybe you need to request the go ahead with another LP. Let your doctor know you would like to have one done sooner than later.
LA
Those were to on my list if I didn't get any reasonable answers to what is going on with me. The first neuro I saw thought the lesions were caused by high bp. The second I saw told me I was too stressed by having 7 children.
Ok but I didn't know stress from 7 children can cause ON!! I felt like Dr. Kolar's office was very kind, helpful, and interested in me. They even asked for some sort of time line.
The other neuros didn't want to see the time line. Maybe you need to request the go ahead with another LP. Let your doctor know you would like to have one done sooner than later.
LA
Thank you, thank you for posting my timeline!! I think another factor in my delayed dx is the positive tests that I've had that lean more towards an autoimmune illness (although I've read that people with MS can have positive autoantibody testing).
I have a gut feeling that I really do have two illnesses. I do have an uncle with severe Rheumatoid Arthritis, so there is probably some genetic predisposition there.
I find myself explaining away some of my sx. You know bowel incontinence could be IBS, Trigeminal Neuralgia a bad tooth (although the dentist xrayed and said teeth are OK). Anyway, you get the picture.
A few weeks ago I had such severe pain then it all hits me in the face that something is really wrong with me. I've had three kids, severe gallbladder attacks (finally got it out), and the pain I felt during this last attack went way above any of them.
Thanks for your input and kind words.
I have a gut feeling that I really do have two illnesses. I do have an uncle with severe Rheumatoid Arthritis, so there is probably some genetic predisposition there.
I find myself explaining away some of my sx. You know bowel incontinence could be IBS, Trigeminal Neuralgia a bad tooth (although the dentist xrayed and said teeth are OK). Anyway, you get the picture.
A few weeks ago I had such severe pain then it all hits me in the face that something is really wrong with me. I've had three kids, severe gallbladder attacks (finally got it out), and the pain I felt during this last attack went way above any of them.
Thanks for your input and kind words.
It sounds like you have a good set up with having two neuros. I'm going to have to get serious about finding a local one. I think the trouble with our local neuros is that unless you have the name of your illness tatooed across your forehead they don't believe anything is wrong with you. Many people travel to Indy if they have a hard to dx illness. .
If I could find a local neuro, and a new Rheumatologist I would at least feel as if I had a team on my side. My Internist is good and he has said he believes it is MS. But, he cannot dx it.
Thanks again.
If I could find a local neuro, and a new Rheumatologist I would at least feel as if I had a team on my side. My Internist is good and he has said he believes it is MS. But, he cannot dx it.
Thanks again.
The neuro seemed to want to wait on doing further testing. I'm not that thrilled about spending money on testing that will get us nowhere, but if it helps seal a dx, then I'm all for it.
I forgot to add something that might be important. It seems as if both of these doctors think I may have problems with both the Peripheral and CNS. I think they are waiting until something more presents. I've noticed that sometimes doctors have a hard time understanding that someone could actually have more than one disorder at a time. This thinking can delay a dx IMO.
I did feel more comfortable with the female neuro, but I didn't dislike the male. I think since I've been treated so poorly by docs in the past it is important to me to stick with one that I can relate to. I will see if I can see her permanently.
I have been doing research on copper deficiencies and there is a myelopathy that can occur. My level was 70 with a ref range of 85-120 I believe. The neuro seemed to think this was very low. She wanted me to start on copper supplements. But no mention was made to recheck the level. She said she wasn't certain if it was what was causing all of my problems or not. What are your thoughts on this.
I'm glad my tip on the post search was helpful. The board sure has added some bells and whistles since I was here last. All good.
Thanks again.
I forgot to add something that might be important. It seems as if both of these doctors think I may have problems with both the Peripheral and CNS. I think they are waiting until something more presents. I've noticed that sometimes doctors have a hard time understanding that someone could actually have more than one disorder at a time. This thinking can delay a dx IMO.
I did feel more comfortable with the female neuro, but I didn't dislike the male. I think since I've been treated so poorly by docs in the past it is important to me to stick with one that I can relate to. I will see if I can see her permanently.
I have been doing research on copper deficiencies and there is a myelopathy that can occur. My level was 70 with a ref range of 85-120 I believe. The neuro seemed to think this was very low. She wanted me to start on copper supplements. But no mention was made to recheck the level. She said she wasn't certain if it was what was causing all of my problems or not. What are your thoughts on this.
I'm glad my tip on the post search was helpful. The board sure has added some bells and whistles since I was here last. All good.
Thanks again.
I can't believe you're not diagnosed after looking over your timeline. Sheeesh, you've used a cane and a wheelchair and have had brain lesions!
I think the ball was dropped on you big time . . . Open MRI's, MRI's without contrast, no repeated LP after an early one (early LP typically represent negatively) . . . Even if they weren't looking for MS, an LP would be helpful to rule out inflammation. You did have a couple of positive ANA tests. CNS lupus (or other autoimmune type illness) can be quite serious, too.
Heavens! I hope you find someone that will help you!
Deb
I think the ball was dropped on you big time . . . Open MRI's, MRI's without contrast, no repeated LP after an early one (early LP typically represent negatively) . . . Even if they weren't looking for MS, an LP would be helpful to rule out inflammation. You did have a couple of positive ANA tests. CNS lupus (or other autoimmune type illness) can be quite serious, too.
Heavens! I hope you find someone that will help you!
Deb
Part 2 of Timeline
Spring 2005 Saw neuro #4 at teaching hospital. She said it sounds like MS but not enough evidence yet. Ordered Evoked testing. All normal However, VEP report states: the P100 responses are within normal limits. Although there is a relative decrease in the amplitude of the responses, the latencies are well within normal limits. This would at least indicated that conduction through the optic nerve is within
normal limits, and therefore, is less likely to represent dysfunction involving the anterior visual pathways. Neuro #4 says I should try and get a neuro in my hometown to follow me. I have tried.
Cognitive testing shows Performance IQ at 23rd percentile and Verbal IQ at 77th percentile. Impaired memory and processing speed.
Fall 2005 Saw neuro #5 He seemed like he was going to try and help me. Ordered another brain MRI, and did EMG and Nerve conduction tests.EMG & NVC normal. Brain MRI report says: There are a few T2 hyprerintense white matter signal abnormalities., a few adjacent to the atria of the left lateral ventricle and 2 within the deep white matter near the right lateral ventricle. No enhancement.
Left eye starts to spasm uncontrollably. Progressing to forcefully shutting. Spams spread down left side of face at times. Opthomologist states it is a neurological problem. Tests for MG result was negative Sent to a Neuromuscular disease neuro (neuro #6) he says I don't have a NMD, but he does feel as though I may have MS. He strongly feels as if I need to be followed on a regular basis, but he only sees NMD patients.
Spring 2006 PT/OT Evaluations show stiff knee type gait pattern with decrease in normal hip and knee flexion, extension. Ability to stand to kneel, to double kneel and stand back up requires use of her hands on stable surface. She is off balance and unstable and uses a lot of trunk deviation as a counter balance. Can stand in Romberg with eyes closed for 30 seconds. Does have balance loss to her left primarily. In tandemRomberg position has worse balance with her left leg behind. With eyes closed she falls off balance and consistently fell to the left.
Visual: mild nystagmus greater than two bats is triggered with end gaze to the left more so than to the right. With tracking in the horizontal plane she does have abnormal pursuit, she does over shoot and correct, indicating some saccadic imbalance (not sure how pertinant this is as I was born with a lazy eye...could it just be from that?) Hand weakness and uncoordinated fine motor skills Grip strength 3 standard deviations below normal, tip strength 2.5 below norm.
May 2006 had an episode of bedwetting. Had partial incontinence for several weeks afterwards. Urodynamics testing showed retention.
July 2006 Bowel incontinence had several episodes over a two or three month span First episode happened while being outside in 95+ degree heat. Called neuro #5 he said he would not see me since he'd already referred me to NMD neuro. His nurse doesn't seem to listen when I tell her the NMD neuro cannot see me again and that he wants me followed by a local neuro.
VNG showed CNS problem Report reads: Oculomotor results revealed abnormal gain in the tracking subtest. This is a central indicator. All other oculomotor tests for saccades and gaze were normal. (Also wonder if this is from the congenital eye muscle weakness, or possible MS?)
Fall 2006 Drove over six hours to see well known MS specialist (neuro #6). He is known for his early dx and early treatment philosophy. The appointment did not go as planned. Due to a scheduling conflict he had to fly back to town to see me, so I felt he rushed me in an out. I probably spent 20 min with him. He said if I would have been seen there a few years ago I may have been started on treatment.
But that since my MRI had remained stable over two years MS was less likely. He then quoted the Mayo Clinic study about how they had been over treating patients, etc. He did want me to have a repeat neuro psych test, and to see a urologist. After that I was supposed to go back to him. But, due to changes in my husband's job I am unable to travel that far anymore.
Jan 2007 Neurocognitive evaluation This round of testing shows many of the same problems as before. However, it was more extensive and showed speed of motor operation, gross motor movements, and fine motor manipulation were all low normal. Strength of grip was mildly impaired on bothrighth and left. Higher order neurobehavioral functions of nondominant tactual discrimination/kinesthesis, nonverbal auditory discrimination, speed of processing incoming sensory information, localization of spatial elements from memory, temporal sequencing and memory, short-term nonverbal memory, intermediate localization of spatial elements from memory and nonverbal concept formation were in the impaired range.
These data were consistent with with perhaps slightly diffuse mild neuropsychological impairment with right frontoparietal and to some extent temporal parietal involvement. He goes on to say that these data taken in conjunction with her history wuld be consistent with what we often see with MS related neurocognitive deficits. He does add that these data are not necessarily a clear cut diagnostic indicator
of MS. But certainly not inconsistent with what we see in MS.
During the follow up appointment to review the results of the testing the Neuropsychologist states while he cannot dx me with MS my deficits are
similar to those that are seen with MS. He also says he is surprised that no one has started me on a CRAB.
Jan 2007 Urodynamics testing show slow flow rate and retention. Urologist is treating me as if I have a neurogenic bladder.I take Flomax every
morning which seems to be helping with the flow rate, retention, hesitancy, and frequent night time bathroom trips.
New Internist he feels that I do have MS and marks it as my diagnosis although he conceedes that I might not yet meet the diagnostic criteria 100% (I feel as if I do). He has just referred me to an MS specialist (lucky #7?) at an MS clinic in Indianapolis.
August 2007 Neurocognitive rehabilitation I started seeing a Speech Pathologist for my cognitive issues. Her testing show major problems with my processing speed. Especially when multitasking she has me rated as having a profound impairment with that.
August 8 to present I have developed bladder spasms which wake me up every morning. They seem to mostly go away when I urinate.
Ongoing sx I still have pain every day. Mostly in my legs and feet, but at times in my arms. If I'm on my feet too long they become numb, and my legs feel as though I'm walking through quicksand. Fatigue, or rather pure exhaustion can come on suddenly usually in the early afternoon. At those times I have to lay down.
I also have tingling in my legs most days. This is made worse by being in the heat. I have stiffness in both legs which is painful. I also get brief stabbing sensations in my feet, but occasionally other areas of my body. I use a cane at times. I purchased a walker but have only used it once. I have used a wheelchair while shopping and on trips. My cognitive symptoms seem to come and go in cycles. They are definitely
worse when I am fatigued or stressed.
Spring 2005 Saw neuro #4 at teaching hospital. She said it sounds like MS but not enough evidence yet. Ordered Evoked testing. All normal However, VEP report states: the P100 responses are within normal limits. Although there is a relative decrease in the amplitude of the responses, the latencies are well within normal limits. This would at least indicated that conduction through the optic nerve is within
normal limits, and therefore, is less likely to represent dysfunction involving the anterior visual pathways. Neuro #4 says I should try and get a neuro in my hometown to follow me. I have tried.
Cognitive testing shows Performance IQ at 23rd percentile and Verbal IQ at 77th percentile. Impaired memory and processing speed.
Fall 2005 Saw neuro #5 He seemed like he was going to try and help me. Ordered another brain MRI, and did EMG and Nerve conduction tests.EMG & NVC normal. Brain MRI report says: There are a few T2 hyprerintense white matter signal abnormalities., a few adjacent to the atria of the left lateral ventricle and 2 within the deep white matter near the right lateral ventricle. No enhancement.
Left eye starts to spasm uncontrollably. Progressing to forcefully shutting. Spams spread down left side of face at times. Opthomologist states it is a neurological problem. Tests for MG result was negative Sent to a Neuromuscular disease neuro (neuro #6) he says I don't have a NMD, but he does feel as though I may have MS. He strongly feels as if I need to be followed on a regular basis, but he only sees NMD patients.
Spring 2006 PT/OT Evaluations show stiff knee type gait pattern with decrease in normal hip and knee flexion, extension. Ability to stand to kneel, to double kneel and stand back up requires use of her hands on stable surface. She is off balance and unstable and uses a lot of trunk deviation as a counter balance. Can stand in Romberg with eyes closed for 30 seconds. Does have balance loss to her left primarily. In tandemRomberg position has worse balance with her left leg behind. With eyes closed she falls off balance and consistently fell to the left.
Visual: mild nystagmus greater than two bats is triggered with end gaze to the left more so than to the right. With tracking in the horizontal plane she does have abnormal pursuit, she does over shoot and correct, indicating some saccadic imbalance (not sure how pertinant this is as I was born with a lazy eye...could it just be from that?) Hand weakness and uncoordinated fine motor skills Grip strength 3 standard deviations below normal, tip strength 2.5 below norm.
May 2006 had an episode of bedwetting. Had partial incontinence for several weeks afterwards. Urodynamics testing showed retention.
July 2006 Bowel incontinence had several episodes over a two or three month span First episode happened while being outside in 95+ degree heat. Called neuro #5 he said he would not see me since he'd already referred me to NMD neuro. His nurse doesn't seem to listen when I tell her the NMD neuro cannot see me again and that he wants me followed by a local neuro.
VNG showed CNS problem Report reads: Oculomotor results revealed abnormal gain in the tracking subtest. This is a central indicator. All other oculomotor tests for saccades and gaze were normal. (Also wonder if this is from the congenital eye muscle weakness, or possible MS?)
Fall 2006 Drove over six hours to see well known MS specialist (neuro #6). He is known for his early dx and early treatment philosophy. The appointment did not go as planned. Due to a scheduling conflict he had to fly back to town to see me, so I felt he rushed me in an out. I probably spent 20 min with him. He said if I would have been seen there a few years ago I may have been started on treatment.
But that since my MRI had remained stable over two years MS was less likely. He then quoted the Mayo Clinic study about how they had been over treating patients, etc. He did want me to have a repeat neuro psych test, and to see a urologist. After that I was supposed to go back to him. But, due to changes in my husband's job I am unable to travel that far anymore.
Jan 2007 Neurocognitive evaluation This round of testing shows many of the same problems as before. However, it was more extensive and showed speed of motor operation, gross motor movements, and fine motor manipulation were all low normal. Strength of grip was mildly impaired on bothrighth and left. Higher order neurobehavioral functions of nondominant tactual discrimination/kinesthesis, nonverbal auditory discrimination, speed of processing incoming sensory information, localization of spatial elements from memory, temporal sequencing and memory, short-term nonverbal memory, intermediate localization of spatial elements from memory and nonverbal concept formation were in the impaired range.
These data were consistent with with perhaps slightly diffuse mild neuropsychological impairment with right frontoparietal and to some extent temporal parietal involvement. He goes on to say that these data taken in conjunction with her history wuld be consistent with what we often see with MS related neurocognitive deficits. He does add that these data are not necessarily a clear cut diagnostic indicator
of MS. But certainly not inconsistent with what we see in MS.
During the follow up appointment to review the results of the testing the Neuropsychologist states while he cannot dx me with MS my deficits are
similar to those that are seen with MS. He also says he is surprised that no one has started me on a CRAB.
Jan 2007 Urodynamics testing show slow flow rate and retention. Urologist is treating me as if I have a neurogenic bladder.I take Flomax every
morning which seems to be helping with the flow rate, retention, hesitancy, and frequent night time bathroom trips.
New Internist he feels that I do have MS and marks it as my diagnosis although he conceedes that I might not yet meet the diagnostic criteria 100% (I feel as if I do). He has just referred me to an MS specialist (lucky #7?) at an MS clinic in Indianapolis.
August 2007 Neurocognitive rehabilitation I started seeing a Speech Pathologist for my cognitive issues. Her testing show major problems with my processing speed. Especially when multitasking she has me rated as having a profound impairment with that.
August 8 to present I have developed bladder spasms which wake me up every morning. They seem to mostly go away when I urinate.
Ongoing sx I still have pain every day. Mostly in my legs and feet, but at times in my arms. If I'm on my feet too long they become numb, and my legs feel as though I'm walking through quicksand. Fatigue, or rather pure exhaustion can come on suddenly usually in the early afternoon. At those times I have to lay down.
I also have tingling in my legs most days. This is made worse by being in the heat. I have stiffness in both legs which is painful. I also get brief stabbing sensations in my feet, but occasionally other areas of my body. I use a cane at times. I purchased a walker but have only used it once. I have used a wheelchair while shopping and on trips. My cognitive symptoms seem to come and go in cycles. They are definitely
worse when I am fatigued or stressed.
Found your time line.
Time line
Before I got sick I was an active married mother of three children. I worked part time as a real estate agent in addition to substitute teaching.My days were filled with chauffeuring kids to football, soccer, and trips to the mall. Things were hectic
at times, but I have always been an on the go person and seemed to thrive in those situations. All of that changed when I got sick. The life I loved had changed forever.
Spring 2003 Developed bilateral foot pain and numbness. Lasted approximately six weeks sx free for about one year
Spring 2004 Original sx returned, but pain and numbness spread up to my hips. Also developed a tingly/vibrating type sensation. Unable to walk very far without having feet go numb. Also, greatly affected by heat. Numbness, tingling, weakness made worse by heat.
This lasted about two months. First MRI done on an open machine showed one 2-3mm signal abnormality in the periventricular white matter LP negative First neuro said sounds like MS, the lesion is suspicious let's do and LP. When LP came back negative said not MS. Did not want to see me again.
Fall 2004 Saw MS Specialist said symptoms do sound like MS. Let's do some tests. After testing spent less than 10 minutes on follow up visit with me and said maybe I have CFS Tthis was after I told him about my sometimes debilitating fatigue (not even one of my main sx.)
Brain, C & T spine MRI's. Brain MRI was told by nurse at MS specialist that the neuro reveiwed the MRI's and said I had subcortical white matter disease. However, at follow up appointment was told they were normal. Had Nerve Conduction and EMG testing which were normal.
Developed weakness and pain in arms. Had difficulty with folding clothes, washing hair, lifting things Also buzzing sensation in neck, especially bad when moving neck at night when trying to sleep. Started taking Neurontin around this time and it helped.
Saw neuro #3 around this time. She did a very brief exam had me breathe heavily for five minutes, asked me if my mouth tingled and when I said yes she said I had anxiety and depression. She wouldn't listen when I said my sx weren't anything like that (besides wouldn't most peoples mouth tingle if they'd hyperventilated?) She sent me back to my PCP with a letter stating I need to be on AD's.
Part 2 next
Time line
Before I got sick I was an active married mother of three children. I worked part time as a real estate agent in addition to substitute teaching.My days were filled with chauffeuring kids to football, soccer, and trips to the mall. Things were hectic
at times, but I have always been an on the go person and seemed to thrive in those situations. All of that changed when I got sick. The life I loved had changed forever.
Spring 2003 Developed bilateral foot pain and numbness. Lasted approximately six weeks sx free for about one year
Spring 2004 Original sx returned, but pain and numbness spread up to my hips. Also developed a tingly/vibrating type sensation. Unable to walk very far without having feet go numb. Also, greatly affected by heat. Numbness, tingling, weakness made worse by heat.
This lasted about two months. First MRI done on an open machine showed one 2-3mm signal abnormality in the periventricular white matter LP negative First neuro said sounds like MS, the lesion is suspicious let's do and LP. When LP came back negative said not MS. Did not want to see me again.
Fall 2004 Saw MS Specialist said symptoms do sound like MS. Let's do some tests. After testing spent less than 10 minutes on follow up visit with me and said maybe I have CFS Tthis was after I told him about my sometimes debilitating fatigue (not even one of my main sx.)
Brain, C & T spine MRI's. Brain MRI was told by nurse at MS specialist that the neuro reveiwed the MRI's and said I had subcortical white matter disease. However, at follow up appointment was told they were normal. Had Nerve Conduction and EMG testing which were normal.
Developed weakness and pain in arms. Had difficulty with folding clothes, washing hair, lifting things Also buzzing sensation in neck, especially bad when moving neck at night when trying to sleep. Started taking Neurontin around this time and it helped.
Saw neuro #3 around this time. She did a very brief exam had me breathe heavily for five minutes, asked me if my mouth tingled and when I said yes she said I had anxiety and depression. She wouldn't listen when I said my sx weren't anything like that (besides wouldn't most peoples mouth tingle if they'd hyperventilated?) She sent me back to my PCP with a letter stating I need to be on AD's.
Part 2 next
I understand about the distance. It is a 3 hour for me also. I come down from the north.
They made me find a neuro closer to home. I am to see Dr. Kolar twice a year and the neuro close to home twice a year. Unless something comes up and I need to see one more often.
I am not sure about the lesion size on my MRI. I actually have a time line on my profile if you want to see it.The ON is the BIG thing in my situation. I also have Trigeminal neurlagia and abnormal reflexes in my legs.
I would stick with them for now if I were you. WHEN whatever it is you have can be diagnosied I am sure they will be able to do it.
I understand about Dr. Kolar's accent!! I was grateful Dr. Rodman was there to translate for me!
I know it is very frustrating. :(
LA
They made me find a neuro closer to home. I am to see Dr. Kolar twice a year and the neuro close to home twice a year. Unless something comes up and I need to see one more often.
I am not sure about the lesion size on my MRI. I actually have a time line on my profile if you want to see it.The ON is the BIG thing in my situation. I also have Trigeminal neurlagia and abnormal reflexes in my legs.
I would stick with them for now if I were you. WHEN whatever it is you have can be diagnosied I am sure they will be able to do it.
I understand about Dr. Kolar's accent!! I was grateful Dr. Rodman was there to translate for me!
I know it is very frustrating. :(
LA
Hi!!!! Great to see you back. I'm so sorry that there has been no progress with a diagnosis, but it is good that your current docs are continuing to follow you and try to collect evidence. Seeing the director of the clinic must have been very hard for you. Just being the director does not make him a better clinician, though you would hope so.
I was dismayed that he doubted the value of doing another LP. That tells me he does not believe this is MS. My first "evil" neuro also told me he believed my LP would be negative - it wasn't and it made my diagnosis. I have also found that, in MS, if the LP is going to be negative it is more likely to be so early in the disease and be positive later.
Your symptoms don't match MG at all except for the swallowing difficulty. And we all know from experience that swallowing problems are common in MS. The Trigeminal Neuralgia is a clear clue toward MS, but it is not an objective one. Is there anyway you can try to see those doctors who have had the most belief in you? Are you able to chose which doctor sees you? I would certainly try.
Good to see you back. And thank you for the tip on "Posts" in your profile. I didn't ever check that to see that it would reveal the threads you had posted on. I wish it would highlight the ones started by each person, so it would be easier to find certain ones. I'll bring that up to MedHelp.
Quix
I was dismayed that he doubted the value of doing another LP. That tells me he does not believe this is MS. My first "evil" neuro also told me he believed my LP would be negative - it wasn't and it made my diagnosis. I have also found that, in MS, if the LP is going to be negative it is more likely to be so early in the disease and be positive later.
Your symptoms don't match MG at all except for the swallowing difficulty. And we all know from experience that swallowing problems are common in MS. The Trigeminal Neuralgia is a clear clue toward MS, but it is not an objective one. Is there anyway you can try to see those doctors who have had the most belief in you? Are you able to chose which doctor sees you? I would certainly try.
Good to see you back. And thank you for the tip on "Posts" in your profile. I didn't ever check that to see that it would reveal the threads you had posted on. I wish it would highlight the ones started by each person, so it would be easier to find certain ones. I'll bring that up to MedHelp.
Quix
I remember you too. Yes, I did see Dr Kolar. Dr. Frazer is who I saw on my two previous visits. I loved her!
I do think they will follow me, which is more than I can say for the other doctors I've seen. I think I was just frustrated because I expected to see Dr Frazer. I had a list of questions for her and when he came in it totally threw me off.
I had a hard time understanding him. He seems to think that because of my muscle pain and swallowing issues that it could be more of a muscular issue. He mentioned Myasthenia, which I have been tested for twice. They did discover that I have a copper defeciency. He's also checking my B12 and vitamin D again.
I don't want a dx of MS, but something is clearly wrong. I have had two separate attacks in two different areas of my CNS. But, until the lesions grow I wont get dx'd. I wish the neuros would explain why I don't meet the criteria yet.
I'm glad you were dx'd. I'm sure ON probably helped seal the deal. Do you happen to know how big your lesions are? Mine appear to be small, maybe 3-4 mm? Maybe that's why they don't count? I dunno.
Another problem I have is that I really wish I had a local neuro to work with me. I was in bad shape several weeks ago. It would have been great if I could have gone in to see someone on short notice. With the distance thing with them, it makes it more difficult.
Thanks again for your help.
I do think they will follow me, which is more than I can say for the other doctors I've seen. I think I was just frustrated because I expected to see Dr Frazer. I had a list of questions for her and when he came in it totally threw me off.
I had a hard time understanding him. He seems to think that because of my muscle pain and swallowing issues that it could be more of a muscular issue. He mentioned Myasthenia, which I have been tested for twice. They did discover that I have a copper defeciency. He's also checking my B12 and vitamin D again.
I don't want a dx of MS, but something is clearly wrong. I have had two separate attacks in two different areas of my CNS. But, until the lesions grow I wont get dx'd. I wish the neuros would explain why I don't meet the criteria yet.
I'm glad you were dx'd. I'm sure ON probably helped seal the deal. Do you happen to know how big your lesions are? Mine appear to be small, maybe 3-4 mm? Maybe that's why they don't count? I dunno.
Another problem I have is that I really wish I had a local neuro to work with me. I was in bad shape several weeks ago. It would have been great if I could have gone in to see someone on short notice. With the distance thing with them, it makes it more difficult.
Thanks again for your help.
Hello,
I remember you. Was it Dr. Kolar you saw? I saw Dr. Rodman and Dr. Kolar back in February. They dx'd me. I have been on Avonex for 6 weeks now.
Dr. Kolar is a very highly respected MS doctor. I am not sure what to suggest to you except to follow up with Dr. Kolar's office. My lesions were not in the typical place either but I have had two bouts on ON along with the two lesion in my brain.
They told me I was EARLY Ms with these symptoms. I don't know if I have helped or not but I can tell you with all I have heard you are at the right Dr. office if it is MS.
Did you see Dr. Hingtgen? Can't remember.
LA
I remember you. Was it Dr. Kolar you saw? I saw Dr. Rodman and Dr. Kolar back in February. They dx'd me. I have been on Avonex for 6 weeks now.
Dr. Kolar is a very highly respected MS doctor. I am not sure what to suggest to you except to follow up with Dr. Kolar's office. My lesions were not in the typical place either but I have had two bouts on ON along with the two lesion in my brain.
They told me I was EARLY Ms with these symptoms. I don't know if I have helped or not but I can tell you with all I have heard you are at the right Dr. office if it is MS.
Did you see Dr. Hingtgen? Can't remember.
LA
Hi Sarah,
Thanks for your kind words. Believe or not, this is my 9th neuro!!! My story is unbelievable. If you click on my name, then click on the post icon you can read my timeline. I just found it. I didn't realize it was last August when I first came here.
All I've really wanted is to be followed by a neuro long term. It looks like this clinic is willing to do that, so I guess I should be happy. But, sometimes the pain, fatigue, and other symptoms get the best of me, and I get impatient with the doctors.
Thanks again.for your reply.
Thanks for your kind words. Believe or not, this is my 9th neuro!!! My story is unbelievable. If you click on my name, then click on the post icon you can read my timeline. I just found it. I didn't realize it was last August when I first came here.
All I've really wanted is to be followed by a neuro long term. It looks like this clinic is willing to do that, so I guess I should be happy. But, sometimes the pain, fatigue, and other symptoms get the best of me, and I get impatient with the doctors.
Thanks again.for your reply.
I am fairly new here so I am not aware of your previous posts. However , I do feel you should go to a new Doctor get a fresh perspective on it all. Take your old reports etc with you and a time line of your symptoms. Everyone is entitled to get a second opinion. Where you are currently seems to have stagnated in helping you.
This is what I would do in your circumstances. it cannot hurt.
I wish you all the best please let us know how you get on.
Sarah
This is what I would do in your circumstances. it cannot hurt.
I wish you all the best please let us know how you get on.
Sarah
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