Aa
I've suspected MS for some time, doctor says No
I have been a very healthy 43 yr. old mother of five until I'd say the past two years. Had a very severe episode of vertigo; kept overnight at hospital. Since then I've been having strange symptoms that have been written off as variant migraine symptoms. It started with slurred speech, shuffling gait, confusion for several hours and myoclonic jerking that prompted my husband to bring me to the ER. I was eventually put on Topamax for migraines which I ended up getting at some point along the way for several weeks non-stop and eventually mild seizures (infrequently), even on the Topamax at 400 mg per day.
I have had vertigo with vomiting for weeks at a time, nystagmus, double vision when looking to left, I wear hearing aids for sensorineural hearing loss, and starting last March, I had to start sitting on a stool in the morning to blow dry my hair, I thought because I was so tired. I have sleep apnea, will get CPAP soon. It really was because my legs were so weak. I ended up in the ER not being able to lift my feet. Was at work and my feet stopped working. Couldn't lift my legs off the stretcher, hardly a few inches and had dorsiflexion problems. SO weak. My new neurologist ordered MRIs of my thoracic, lumbar and cervical spine, did an EMG, Nerve Conduction Study: all came back normal. (Had a normal MRI of brain last Feb) Now my feet and legs are cramping like mad so painfully. My doctor wants me to see a psychiatrist, saying I'm suffering from ANXIETY. I find this ridiculous. How could anxiety make you stop walking? Is this possible? I am NOT making this up. I love my life; I feel like he doesn't even know me and is judging me. I have stress like everyone does. But I am not buying this. There is something wrong with my body he is missing. Could I be so wrong?
I have had vertigo with vomiting for weeks at a time, nystagmus, double vision when looking to left, I wear hearing aids for sensorineural hearing loss, and starting last March, I had to start sitting on a stool in the morning to blow dry my hair, I thought because I was so tired. I have sleep apnea, will get CPAP soon. It really was because my legs were so weak. I ended up in the ER not being able to lift my feet. Was at work and my feet stopped working. Couldn't lift my legs off the stretcher, hardly a few inches and had dorsiflexion problems. SO weak. My new neurologist ordered MRIs of my thoracic, lumbar and cervical spine, did an EMG, Nerve Conduction Study: all came back normal. (Had a normal MRI of brain last Feb) Now my feet and legs are cramping like mad so painfully. My doctor wants me to see a psychiatrist, saying I'm suffering from ANXIETY. I find this ridiculous. How could anxiety make you stop walking? Is this possible? I am NOT making this up. I love my life; I feel like he doesn't even know me and is judging me. I have stress like everyone does. But I am not buying this. There is something wrong with my body he is missing. Could I be so wrong?
continued,
As far as your question about the NCS and EVP, I think Jamie answered you really well. I had the same questions when I had mine done a couple of weeks ago. Mine came back perfectly normal too. From what I understand, having a normal NCS does not rule out MS, it actually makes them look even harder for MS. It basically means that your numbness and weakness is not coming from the peripheral nervous system, but from the central nervous system. What it does rule out is pinched nerves, ALS, etc. I have not had the evoked potentials yet, but I think my neuro will eventually order atleast one type of that test for me. She is waiting to see what we get on the MRI, if I ever get to have it done!
That is pretty cool that the MS society sent that information to you. Did you forward it to your physician? I am having some major trouble with this heat too! I know it is hot where you are, but it is boiling here! The humidity really zaps me too. I feel like a hermit, cause all I want to do is stay inside in the air conditioning. I don't want to see my next utility bill. I have been keeping the thermostat set on 67. Luckily my husband and kids are hot natured, so they don't mind. I freeze my mom out of here when she comes over though!
You mentioned in another post that you see cases of schleroderma at your office. Do you work at a rheumatology office?
You are right, I have already said a few prayers for Quix, as well as everyone I have become friends with on this forum. She seems like a pretty tough lady though, so I have confidence she is going to pull through this. I think her body is just telling her to slow down and take care of herself for a while. It is hard to fight depression when you are so run down.
Well, I think I have gone on long enough. I'd better give my fingers a rest. Take care and write back when you can!
Jenn
As far as your question about the NCS and EVP, I think Jamie answered you really well. I had the same questions when I had mine done a couple of weeks ago. Mine came back perfectly normal too. From what I understand, having a normal NCS does not rule out MS, it actually makes them look even harder for MS. It basically means that your numbness and weakness is not coming from the peripheral nervous system, but from the central nervous system. What it does rule out is pinched nerves, ALS, etc. I have not had the evoked potentials yet, but I think my neuro will eventually order atleast one type of that test for me. She is waiting to see what we get on the MRI, if I ever get to have it done!
That is pretty cool that the MS society sent that information to you. Did you forward it to your physician? I am having some major trouble with this heat too! I know it is hot where you are, but it is boiling here! The humidity really zaps me too. I feel like a hermit, cause all I want to do is stay inside in the air conditioning. I don't want to see my next utility bill. I have been keeping the thermostat set on 67. Luckily my husband and kids are hot natured, so they don't mind. I freeze my mom out of here when she comes over though!
You mentioned in another post that you see cases of schleroderma at your office. Do you work at a rheumatology office?
You are right, I have already said a few prayers for Quix, as well as everyone I have become friends with on this forum. She seems like a pretty tough lady though, so I have confidence she is going to pull through this. I think her body is just telling her to slow down and take care of herself for a while. It is hard to fight depression when you are so run down.
Well, I think I have gone on long enough. I'd better give my fingers a rest. Take care and write back when you can!
Jenn
Christina,
I am so sorry I never responded to you from this thread. I guess I must have missed the posting somehow. I hope you don't think I was ignoring you!
My children are two and four years. I actually had the same due date with both of them, so they are exactly two years apart. They keep me busy to say the least. I know you said yours are older, how old?
My night episodes are what started this whole relapse of symptoms this time. I had just finished the spring semester and was looking forward to a relaxing summer with the kids, so I don't think stress is what was causing the episodes, as was suggested by my doctor. I woke up suddenly one night from a deep sleep and my entire body was shaking or vibrating uncontrollably. I was aware it was happening, but could not make it stop. I tried to call out to my husband but just kept stuttering instead. After about thirty seconds it started to ease up and I was able to tell my husband that I thought I had a seizure. My heart was racing and I was so scared. I called my doctor the next day and made an appointment. That is when she started trying to refer me to a neurologist. She said she didn't think it was a seizure since I didn't lose consciousness, but she thought they should do an EEG and brain CT just to check. She went on vacation the next day,and things got really messed up at her office. They took forever to refer me, then sent me to a clinic that was not in my insurance's network. I ended making my own appointment with a neurologist that specializes in MS because I started developing all of these other neurological symptoms while waiting for my neuro referral. I just got to see the neuro a couple of weeks ago (These episodes started two months ago!). Needless to say, I was a little frustrated. The episodes continued for a couple of weeks. I would have them several times during the night. It felt like there was a forceful vibrating or shaking coming from deep within my chest that was making my entire body shake. I haven't had one in the last month. I still feel shaky and like I am buzzing a lot, especially when I go to bed. Soon after the night episodes stopped, the hand tremors started. All of my symptoms have gotten progressively worse over the last couple of months. I am having some of the same symptoms I had the last two times (after the birth of both of my kids), but I am also developing a lot of new ones. I am really frustrated right now because my insurance company still has not authorized the MRI's and EEG my neuro ordered two weeks ago. The doctor's office has been trying to precertify me for those procedures, but Blue Cross Blueshield just takes forever. I am afraid my symptoms are going to go into remission before I ever get the tests done. Then nothing will show up once again and I will have to wait for the next flare up and start all over again. Aargh!
I am so sorry I never responded to you from this thread. I guess I must have missed the posting somehow. I hope you don't think I was ignoring you!
My children are two and four years. I actually had the same due date with both of them, so they are exactly two years apart. They keep me busy to say the least. I know you said yours are older, how old?
My night episodes are what started this whole relapse of symptoms this time. I had just finished the spring semester and was looking forward to a relaxing summer with the kids, so I don't think stress is what was causing the episodes, as was suggested by my doctor. I woke up suddenly one night from a deep sleep and my entire body was shaking or vibrating uncontrollably. I was aware it was happening, but could not make it stop. I tried to call out to my husband but just kept stuttering instead. After about thirty seconds it started to ease up and I was able to tell my husband that I thought I had a seizure. My heart was racing and I was so scared. I called my doctor the next day and made an appointment. That is when she started trying to refer me to a neurologist. She said she didn't think it was a seizure since I didn't lose consciousness, but she thought they should do an EEG and brain CT just to check. She went on vacation the next day,and things got really messed up at her office. They took forever to refer me, then sent me to a clinic that was not in my insurance's network. I ended making my own appointment with a neurologist that specializes in MS because I started developing all of these other neurological symptoms while waiting for my neuro referral. I just got to see the neuro a couple of weeks ago (These episodes started two months ago!). Needless to say, I was a little frustrated. The episodes continued for a couple of weeks. I would have them several times during the night. It felt like there was a forceful vibrating or shaking coming from deep within my chest that was making my entire body shake. I haven't had one in the last month. I still feel shaky and like I am buzzing a lot, especially when I go to bed. Soon after the night episodes stopped, the hand tremors started. All of my symptoms have gotten progressively worse over the last couple of months. I am having some of the same symptoms I had the last two times (after the birth of both of my kids), but I am also developing a lot of new ones. I am really frustrated right now because my insurance company still has not authorized the MRI's and EEG my neuro ordered two weeks ago. The doctor's office has been trying to precertify me for those procedures, but Blue Cross Blueshield just takes forever. I am afraid my symptoms are going to go into remission before I ever get the tests done. Then nothing will show up once again and I will have to wait for the next flare up and start all over again. Aargh!
OPPS!!!!MS brain this morning.
To all of you still in limbo land,GET copies of all your test results.Read them.
It took me 2 years of testing,
3 brain MRI's
3 C-spine,thoracic,lumbar
Evoked potentials---VEP(eyes) SSEP (limbs)
EMG/NCS
EEG--awake and asleep
ENG/VNG
Lumbar Puncture
Thousands of blood drawls.
Get your test results,It took the 4th neuro's to give me a DX.Even though my GP and Electro-muscular and neurosurgeon said MS all along.
I took 3 inches of test results and MRI's on CD to him.After 1 and half hours with him routine exam and going through test results,before I left his office I had a DX.
Jamie how is Michigan,I lived there for 14 years,my kids loved it.They're not keen on Ohio.
To all of you still in limbo land,GET copies of all your test results.Read them.
It took me 2 years of testing,
3 brain MRI's
3 C-spine,thoracic,lumbar
Evoked potentials---VEP(eyes) SSEP (limbs)
EMG/NCS
EEG--awake and asleep
ENG/VNG
Lumbar Puncture
Thousands of blood drawls.
Get your test results,It took the 4th neuro's to give me a DX.Even though my GP and Electro-muscular and neurosurgeon said MS all along.
I took 3 inches of test results and MRI's on CD to him.After 1 and half hours with him routine exam and going through test results,before I left his office I had a DX.
Jamie how is Michigan,I lived there for 14 years,my kids loved it.They're not keen on Ohio.
All I know is the more I know, the more I don't know anything at all! The doctor didn't measure my head at all to put the electrodes on, so I'm not sure what was done. We'll have to see. I'll summon up the courage to ask at my next and last appointment before I get sent to the psychiatrist...
I'll go look you up on the 6/5 post, see exactly who you are... I guess I have to learn like so many to take a deep breath and be patient. I hate that.
I am having a good day. It's sunny here in lovely Michigan, and I'm in an air-conditioned office, and my husband just told me he's coming home for a visit. (He travels a lot.) I hope you're having a good day, as well! Keep healthy!
Christina*
I'll go look you up on the 6/5 post, see exactly who you are... I guess I have to learn like so many to take a deep breath and be patient. I hate that.
I am having a good day. It's sunny here in lovely Michigan, and I'm in an air-conditioned office, and my husband just told me he's coming home for a visit. (He travels a lot.) I hope you're having a good day, as well! Keep healthy!
Christina*
HI! I have not been diagnosed with anything yet - I am waiting for the results of the brain MRI, my appt is July 9th. I don't think it will show anything though for some reason. Everything I've had is pretty mild compared to a lot of people on here, and even many of them have had a hard time being diagnosed. I think my original thread is down the page on 6/5 titled "Neurologist is concerned its MS" if you want to read about everything! :) My neuro has mentioned doing a spinal tap, but I think I will hold off on that unless and until I have any further symptoms.
Well, if they did the electrodes on your head maybe that is what it was. I have heard other people say we should all request the actual "write up" of each diagnostic test we have done so that we can keep our own copies and be able to track dates, tests done, results, etc. Especially so that if you see other doctors, you have good information to share with them.
You have definitely been through a lot with your symptoms. I can honestly say there is NO WAY anxiety is causing all of your problems. You have real problems that have in fact been documented. If you could get in to see a MS Specialist, I think that would be best. At the very least they need to re do your brain MRI with and without contrast and see if anything has changed since you had them last February.
I hope you're having a good day today! Thanks for responding!
Jamie
Well, if they did the electrodes on your head maybe that is what it was. I have heard other people say we should all request the actual "write up" of each diagnostic test we have done so that we can keep our own copies and be able to track dates, tests done, results, etc. Especially so that if you see other doctors, you have good information to share with them.
You have definitely been through a lot with your symptoms. I can honestly say there is NO WAY anxiety is causing all of your problems. You have real problems that have in fact been documented. If you could get in to see a MS Specialist, I think that would be best. At the very least they need to re do your brain MRI with and without contrast and see if anything has changed since you had them last February.
I hope you're having a good day today! Thanks for responding!
Jamie
Jump on in! I'll take all the help I can get! Thanks!
How did your tests go? Have you been diagnosed already? In the process? I hope you are feeling well. I recognize your username. I thought I read you had been diagnosed already. Do you get cramps in your legs and arm? I swear a tiny gopher resides in my right thigh. I can't be sure, but I'm going to name him soon.
Anyway, the information is helpful. I feel sort of foolish, still, however, because, during the test, I think the doctor did put an electrode or two on my forehead. Not all over my scalp like during an EEG. Does that sound like it could have been a Somatosensory test? He did that as well as the EMG and I know he did a nerve conduction study. It all took about a half hour.
I've had a BAEP done by another neurologist, which, of course, was abnormal, due to my hearing loss. I don't know what he expected to find out from that. I was having trouble with slurred speech and balance problems at the time, so perhaps he was looking for neuromas. Imaging would have made more sense, I think. He made a LOT of money from my insurance company! Ka-ching.
Thank you for the information. I hope your week is starting well.
Blessings,
Christina*
How did your tests go? Have you been diagnosed already? In the process? I hope you are feeling well. I recognize your username. I thought I read you had been diagnosed already. Do you get cramps in your legs and arm? I swear a tiny gopher resides in my right thigh. I can't be sure, but I'm going to name him soon.
Anyway, the information is helpful. I feel sort of foolish, still, however, because, during the test, I think the doctor did put an electrode or two on my forehead. Not all over my scalp like during an EEG. Does that sound like it could have been a Somatosensory test? He did that as well as the EMG and I know he did a nerve conduction study. It all took about a half hour.
I've had a BAEP done by another neurologist, which, of course, was abnormal, due to my hearing loss. I don't know what he expected to find out from that. I was having trouble with slurred speech and balance problems at the time, so perhaps he was looking for neuromas. Imaging would have made more sense, I think. He made a LOT of money from my insurance company! Ka-ching.
Thank you for the information. I hope your week is starting well.
Blessings,
Christina*
Hi! I hope you don't mind if I jump in on your conversation! I was reading your question about the Nerve Conduction Studies and whether they are related to Evoked Potentials - they are not. I just had the NCV's done on my right arm and both legs in the last few weeks. These tests are only to test the Peripheral nerves in that limb. This just shows if there is a problem with the spinal nerve root that that nerve comes out of (like the spine). With your history of a back surgery, they were likely checking to see if your spinal cord was being compromised by a herniation of some sort.
The evoked potentials test the nerve's reaction time from the CNS (brain), so they actually hook probes to your head instead of the limb (or maybe in addition to - I have not had these yet) and then stimulate a nerve and measure how long it takes the message to travel to the brain and then back. There are different kinds of EP's - like the Visual, Somatosensory and there is one for hearing but I don't know the name. They are different. My neuro started with the NCV's to see if it was a peripheral nerve problem. When they came up normal is when he said he wanted to look further into the CNS to see if the problem is coming from there. So, if the tests you had were normal, I agree with you that they need to keep looking to see why that happened with your legs.
Also, it sounds like you are not sure who read that MRI. I have always heard it is best if the neuro that is looking to diagnose you reads the films him/herself. That is what mine does. You may want to request your films and take them with you to a neurologist or MS specialist and have them look at them to be sure they are normal.
Hope that helps!
Jamie
The evoked potentials test the nerve's reaction time from the CNS (brain), so they actually hook probes to your head instead of the limb (or maybe in addition to - I have not had these yet) and then stimulate a nerve and measure how long it takes the message to travel to the brain and then back. There are different kinds of EP's - like the Visual, Somatosensory and there is one for hearing but I don't know the name. They are different. My neuro started with the NCV's to see if it was a peripheral nerve problem. When they came up normal is when he said he wanted to look further into the CNS to see if the problem is coming from there. So, if the tests you had were normal, I agree with you that they need to keep looking to see why that happened with your legs.
Also, it sounds like you are not sure who read that MRI. I have always heard it is best if the neuro that is looking to diagnose you reads the films him/herself. That is what mine does. You may want to request your films and take them with you to a neurologist or MS specialist and have them look at them to be sure they are normal.
Hope that helps!
Jamie
(Ran out of space!)
needed more information. I thought it was very telling!
Anyway. I have been sort of worried about something, I guess. Is a Nerve Conduction Study an evoked potential study of some kind? It seems to me when I was hooked up and probed it should have shown SOMEthing. It all came back normal. I am telling you, I could not raise my feet hardly a few inches off the stretcher in the hospital, and I tried with all my might. It was as if they were lead. Nothing in particular had happened out of the ordinary that day, but the week before, I had taken off work to prepare for a Confirmation party for my son. We moved last fall and I haven't felt well all fall/winter, and I still really had lots of unpacking to do. Cleaning, cooking, more activity than usual by far. Sunday the party, Monday, baseball, had to rest half way to the diamond, Tuesday, my day off, napped until 1:30 (I NEVER nap) and Wednesday - my legs stopped working.
Do you know about the NCS being an EP? That would rule out MS right there, wouldn't it? I just have so many symptoms, and this is a scorcher week in Michigan. We were watching my son's All-star baseball game on Saturday in the midday sun, and I started my duck-walk slowly to the car again. The heat surprises me like that. Especially with my walking and hand tremors. I've read it does a number on you, too. I hope all goes well with your upcoming tests. There are so many out there on pins and needles with pins and needles! We're all searching for results that we don't necessarily want. On a quest. Now I'm babbling; it's late. Feel well. Say a prayer for Quix with me! Bet you already have!
Blessings,
Christina*
needed more information. I thought it was very telling!
Anyway. I have been sort of worried about something, I guess. Is a Nerve Conduction Study an evoked potential study of some kind? It seems to me when I was hooked up and probed it should have shown SOMEthing. It all came back normal. I am telling you, I could not raise my feet hardly a few inches off the stretcher in the hospital, and I tried with all my might. It was as if they were lead. Nothing in particular had happened out of the ordinary that day, but the week before, I had taken off work to prepare for a Confirmation party for my son. We moved last fall and I haven't felt well all fall/winter, and I still really had lots of unpacking to do. Cleaning, cooking, more activity than usual by far. Sunday the party, Monday, baseball, had to rest half way to the diamond, Tuesday, my day off, napped until 1:30 (I NEVER nap) and Wednesday - my legs stopped working.
Do you know about the NCS being an EP? That would rule out MS right there, wouldn't it? I just have so many symptoms, and this is a scorcher week in Michigan. We were watching my son's All-star baseball game on Saturday in the midday sun, and I started my duck-walk slowly to the car again. The heat surprises me like that. Especially with my walking and hand tremors. I've read it does a number on you, too. I hope all goes well with your upcoming tests. There are so many out there on pins and needles with pins and needles! We're all searching for results that we don't necessarily want. On a quest. Now I'm babbling; it's late. Feel well. Say a prayer for Quix with me! Bet you already have!
Blessings,
Christina*
Wow. I've read through some of your posts. You've got a long history as well. And with two little ones. What are their ages? This diagnostic process is so frustrating if it doesn't present in the 'classic' way, if there is such a thing. I didn't happen to find what is happening at night to you. What's going on?
I hope Quix feels better. What an ordeal she's been through. Her story is what made me post at all. That her doctor thought she was faking her symptoms and she's a PHYSICIAN. Apparently my doc feels the same thing about me. It really does hurt to have your doctor think that. It's humiliating, to question you like that. I've gone to him for help.
I emailed my Michigan chapter of the MS Society for an MS specialist, and his name was on the list, so I told them a brief description of my symptoms and about my episode of the leg weakness and told them that he had done the MRIs and referred me to a psychiatrist, and they told me they really do NOT give advice, but gave me a link to diagnosis and other things. Then out of the blue, about two weeks later, I got an email from them again, saying that perhaps I should print off something for my doctor regarding diagnostic criteria for MS like spinal taps, evoked potentials, etc., and if he liked, there was a link for physicians who
I hope Quix feels better. What an ordeal she's been through. Her story is what made me post at all. That her doctor thought she was faking her symptoms and she's a PHYSICIAN. Apparently my doc feels the same thing about me. It really does hurt to have your doctor think that. It's humiliating, to question you like that. I've gone to him for help.
I emailed my Michigan chapter of the MS Society for an MS specialist, and his name was on the list, so I told them a brief description of my symptoms and about my episode of the leg weakness and told them that he had done the MRIs and referred me to a psychiatrist, and they told me they really do NOT give advice, but gave me a link to diagnosis and other things. Then out of the blue, about two weeks later, I got an email from them again, saying that perhaps I should print off something for my doctor regarding diagnostic criteria for MS like spinal taps, evoked potentials, etc., and if he liked, there was a link for physicians who
Thank you for asking. I have been struggling with a proper diagnosis for the past eight years. I am currently seeing a new neurologist whom I feel is going to do everything she can to get to the bottom of my problem. I had an EMG last week, am scheduled for an MRI of the head, neck, and spine soon after as well as an EEG during sleep for my episodes during the night. She said depending on what we find on the MRI (if we don't find anything) she willl do a lumbar puncture. We'll see how this goes. You can look at my previous postings for a detailed recap of my symptoms and diagnosis. I have enjoyed so much being a part of this forum. It has been the reason I have stayed in a positive frame of mind throughout this last relapse. Stick with us. We are here for each other!
Jenn
Jenn
Oops.
Exactly. What is your status with diagnosis Jenn? How are you? You seem delightful and very supportive of others.
Exactly. What is your status with diagnosis Jenn? How are you? You seem delightful and very supportive of others.
That is scary. I couldn't really register the pinprick test until about my knees. I could feel the pressure but not the pricking.
I just remembered -- at my exam I was stunned when the neurologist did the pinprick exam all over my lower body. I could barely even register it until he got to my chest. I almost cried. I had no idea I had no sensation. FYI.
I am so glad I didn't just 'browse' this forum like I've done on so many others. People are so kind! Thanks for that!
As for the name, my 18 year old son comes up with the funniest nicknames for all of us. He calls each of his brothers their own nickname, too, the littlest (6) being 'Money,' we think because he's either trying to scam a few bucks from the 18 year old or the root of all evil! Just kidding! He calls him 'Oscar,' too, because he's our little actor.
Well, thanks for the reply, and I hope to get to know you, and hope you are well.
Isn't it strange about that water? I'd love to know what causes those sensations!
Keep well. Blessings.
Momzilla*
As for the name, my 18 year old son comes up with the funniest nicknames for all of us. He calls each of his brothers their own nickname, too, the littlest (6) being 'Money,' we think because he's either trying to scam a few bucks from the 18 year old or the root of all evil! Just kidding! He calls him 'Oscar,' too, because he's our little actor.
Well, thanks for the reply, and I hope to get to know you, and hope you are well.
Isn't it strange about that water? I'd love to know what causes those sensations!
Keep well. Blessings.
Momzilla*
As a mother of two small children, I must say that I love your username! I am so sorry to hear about what you are going through. I just wanted to lend some support your way and to let you know that you are not alone. There probably is not a person on this forum who has not been shrugged off as having anxiety or depression by at least one doctor during their quest to find a diagnosis. Take Quix's advice though, it can only help. In meantime, you need to become your strongest advocate. Use this forum and the internet to get as much information as you can arm yourself with. I will be thinking about you. Good luck!
Jenn
PS: I had the water running down the leg thing happen to me too about a week ago. Weird!
Jenn
PS: I had the water running down the leg thing happen to me too about a week ago. Weird!
I was hoping to hear from you. I so appreciate your kind response.
I suppose I should start by saying that I do, in fact have a history of post-part um depression, but not anxiety, per se. I was treated for it after I had each of my beautiful children. I was attacked in college, and went through therapy for that. The same psychiatrist treated me for all those things. He is a wonderful doctor.
I tend, by my nature to be very calm and easygoing. I am a "count to 3" kind of mom. My friends laugh that I never raise my voice at my children, and that if I ever do get to '3', I won't know what to actually do. But, I must admit, now I am anxious. Not being able to move my legs was scary. I think it would make anyone anxious and I'm surprised my neuro didn't investigate further. I have found conversion disorder while floundering around online. It doesn't seem to be me, but I will be honest with my doctor when I see him. I understand what you mean about him being able to be an ally. When I called to make an appointment with him, after all this time, he asked if I was sure I had a good neuro work up.
About the MRIs, they were done with and w/o contrast, but it's funny. I work for our friend who's a surgeon. We have access to the hospital computers at work, so after my ENT ordered an inner auditory canal/brain MRI, the surgeon went to look for the results on the computer without telling me. For days, the partial results read ABNORMAL. Then, when the final report came back, it was suddenly normal. He was worried sick for days, and he still thinks that something wasn't right on the films, but another radiologist thinks it looked OK to him or her. Do you know what I mean?
I have done maneuvers for the vertigo, with some results, I guess. My audiologist (I wear hearing aids, my sensorineural hearing loss is fairly symmetrical) sometimes notices "vestibular nystagmus" when I glance up to the left when I'm in her office. When I try to read sometimes nystagmus is troublesome. I get double vision if I am laying on my left side and look downward or to the left. Sometimes upon waking I have double vision. I noticed my hearing loss when I returned to the workforce about 5 years ago. My ENT says it could have been deteriorating much longer.
I wasn't put on Topamax right away for the slurring and cognitive difficulties, but I think it helps. I still get breakthrough migraines and had a simple partial seizure in April, though. And I'll tell you something that 'makes me anxious:' there are days when I sometimes have to actually write on my phone "Good morning Dr. Brown's Office" (alias) so I don't forget what to say when I answer the phone at work. I am the clinical study coordinator for our office. The surgeon is the principal investigator for 3 studies. I enjoy my work; we primarily work with breast cancer patients and I get to sit and listen to them. But there are days I just can't think of the name of the doctor (my friend) I work for. Anxiety.
About the sleep apnea: I used to be heavy, have lost a lot of weight since becoming more active after spine surgery in 2005. Was in lots of pain before it. No pain after it. Played lots with my boys and lost weight from that and the Topamax. Also, I get numbness in my throat a LOT. It feels like I have some kind of ptosis in my soft palate since the numbness started. And I have swallowing problems. Food just kind of hangs there. I don't choke. Just have to drink something to make food go down. And it feels like I have too much saliva. Sorry--too much info, probably. No one thinks it's from my surgery, I've done a swallow test, all's fine, apparently.
I have moderate obstructive sleep apnea. Just did the CPAP test, and will see the sleep doctor again to get a prescription for a CPAP of my own.
I know this tome has taken on a life of its own! I wanted to mention as well--I read in one of your letters that you had the sensation of warm water running down your thigh. Incredible! The very thing happened to me! I was watering my flowers the week after I had the problem with my dorsiflexion in my toes and I couldn't understand how I had spilled the watering can down the front of my legs or why I had filled it with hot water. I looked down, and of course, I was dry! Weird.
I will let you get back to your life, but thanks SO much for sharing your time. I DO hope you are well.
Blessings,
Momzilla*
I suppose I should start by saying that I do, in fact have a history of post-part um depression, but not anxiety, per se. I was treated for it after I had each of my beautiful children. I was attacked in college, and went through therapy for that. The same psychiatrist treated me for all those things. He is a wonderful doctor.
I tend, by my nature to be very calm and easygoing. I am a "count to 3" kind of mom. My friends laugh that I never raise my voice at my children, and that if I ever do get to '3', I won't know what to actually do. But, I must admit, now I am anxious. Not being able to move my legs was scary. I think it would make anyone anxious and I'm surprised my neuro didn't investigate further. I have found conversion disorder while floundering around online. It doesn't seem to be me, but I will be honest with my doctor when I see him. I understand what you mean about him being able to be an ally. When I called to make an appointment with him, after all this time, he asked if I was sure I had a good neuro work up.
About the MRIs, they were done with and w/o contrast, but it's funny. I work for our friend who's a surgeon. We have access to the hospital computers at work, so after my ENT ordered an inner auditory canal/brain MRI, the surgeon went to look for the results on the computer without telling me. For days, the partial results read ABNORMAL. Then, when the final report came back, it was suddenly normal. He was worried sick for days, and he still thinks that something wasn't right on the films, but another radiologist thinks it looked OK to him or her. Do you know what I mean?
I have done maneuvers for the vertigo, with some results, I guess. My audiologist (I wear hearing aids, my sensorineural hearing loss is fairly symmetrical) sometimes notices "vestibular nystagmus" when I glance up to the left when I'm in her office. When I try to read sometimes nystagmus is troublesome. I get double vision if I am laying on my left side and look downward or to the left. Sometimes upon waking I have double vision. I noticed my hearing loss when I returned to the workforce about 5 years ago. My ENT says it could have been deteriorating much longer.
I wasn't put on Topamax right away for the slurring and cognitive difficulties, but I think it helps. I still get breakthrough migraines and had a simple partial seizure in April, though. And I'll tell you something that 'makes me anxious:' there are days when I sometimes have to actually write on my phone "Good morning Dr. Brown's Office" (alias) so I don't forget what to say when I answer the phone at work. I am the clinical study coordinator for our office. The surgeon is the principal investigator for 3 studies. I enjoy my work; we primarily work with breast cancer patients and I get to sit and listen to them. But there are days I just can't think of the name of the doctor (my friend) I work for. Anxiety.
About the sleep apnea: I used to be heavy, have lost a lot of weight since becoming more active after spine surgery in 2005. Was in lots of pain before it. No pain after it. Played lots with my boys and lost weight from that and the Topamax. Also, I get numbness in my throat a LOT. It feels like I have some kind of ptosis in my soft palate since the numbness started. And I have swallowing problems. Food just kind of hangs there. I don't choke. Just have to drink something to make food go down. And it feels like I have too much saliva. Sorry--too much info, probably. No one thinks it's from my surgery, I've done a swallow test, all's fine, apparently.
I have moderate obstructive sleep apnea. Just did the CPAP test, and will see the sleep doctor again to get a prescription for a CPAP of my own.
I know this tome has taken on a life of its own! I wanted to mention as well--I read in one of your letters that you had the sensation of warm water running down your thigh. Incredible! The very thing happened to me! I was watering my flowers the week after I had the problem with my dorsiflexion in my toes and I couldn't understand how I had spilled the watering can down the front of my legs or why I had filled it with hot water. I looked down, and of course, I was dry! Weird.
I will let you get back to your life, but thanks SO much for sharing your time. I DO hope you are well.
Blessings,
Momzilla*
First off, I'm really sorry for what you're going through. Vertigo, vision problems, intermitent paralysis and weakness. These are awful to live with. The question of anxiety comes up a lot. A WHOLE LOT! And it is a mixed back, but one that usually works against getting a diagnosis.
All of these symptoms would cause the most calm and stoic person to be anxious and out of their mind. And, then, anxiety heightens and magnifies neurological symptoms that are already there. A referral to a psychiatrist feels just so insulting and dismissive and wrong. You ask how anxiety can cause paralysis. The condition your doctor is considering is called "hysterical" or a "conversion disorder." And yes, there are many cases where severe anxiety has been shown to produce functional blindness and other things such as paralysis. Those occur, but in my opinion, should be diagnoses of EXCLUSION. Apparently your doctor (the neuro?) feels he has exluded all other causes. I disagree.
Of course, no body here can tell you what role anxiety may or may not be palying, but my first impulse is to assume any anxiety that is present is secondary to the underlying problems. May I ask a few questions?
Were all the MRI's done with and without contrast?
Are there any abnormalities on your physical exam? Balance, weakness, reflexes?
Do you have a history of severe anxiety?
Do they know what is causing the sleep apnea? Are you overwieght?
Has the Topomax had any effect on the episodes of slurred speech and confusion?
Have you been evaluated for the vertigo, nystagmus and hearing loss? How long ago did the hearing loss occur and does your hearing fluccuate? Some days better and some worse? You need to see a sub-specialist in balance, hearing and dizziness known as a neuro-otologist. If you wish I can tell you where to find the name of such a specialist.
Now, about the psychiatrist. Twice in the last month or so on this forum and on the general Neurology Support Forum people who have been judged "hysterical" or just anxious have been referred to psych with the best result possible. That is, the psychiatrist has been able to say that the anxiety is secondary and that the medical doctor needs to complete the neurologic work up. In the meantime any anxiety can be addressed while the workup resumes. Psychiatrists have a strong training in neurology. And they can become your best ally.
MRI's can certainly be negative early in MS. Therefore, your neurologist should be planning a repeat series in 3 to 6 months. When there are symptoms and physical exam signs suggestive of an underlying demyelinating disease such as MS or CIDP, but the MRI doesn't help, the next appropriate steps in the work up are a spinal tap and evoked potentials. I would say you need both of those.
If you are heavy (I am) the tap can be done under fluoroscopy in the X-ray department. Mine was absolutely painless. The fluid can contain a lot of information about several neurological disease.
I have more to say, but need to do something else right now. If you would give us a little more info, maybe we can help.
Quix
All of these symptoms would cause the most calm and stoic person to be anxious and out of their mind. And, then, anxiety heightens and magnifies neurological symptoms that are already there. A referral to a psychiatrist feels just so insulting and dismissive and wrong. You ask how anxiety can cause paralysis. The condition your doctor is considering is called "hysterical" or a "conversion disorder." And yes, there are many cases where severe anxiety has been shown to produce functional blindness and other things such as paralysis. Those occur, but in my opinion, should be diagnoses of EXCLUSION. Apparently your doctor (the neuro?) feels he has exluded all other causes. I disagree.
Of course, no body here can tell you what role anxiety may or may not be palying, but my first impulse is to assume any anxiety that is present is secondary to the underlying problems. May I ask a few questions?
Were all the MRI's done with and without contrast?
Are there any abnormalities on your physical exam? Balance, weakness, reflexes?
Do you have a history of severe anxiety?
Do they know what is causing the sleep apnea? Are you overwieght?
Has the Topomax had any effect on the episodes of slurred speech and confusion?
Have you been evaluated for the vertigo, nystagmus and hearing loss? How long ago did the hearing loss occur and does your hearing fluccuate? Some days better and some worse? You need to see a sub-specialist in balance, hearing and dizziness known as a neuro-otologist. If you wish I can tell you where to find the name of such a specialist.
Now, about the psychiatrist. Twice in the last month or so on this forum and on the general Neurology Support Forum people who have been judged "hysterical" or just anxious have been referred to psych with the best result possible. That is, the psychiatrist has been able to say that the anxiety is secondary and that the medical doctor needs to complete the neurologic work up. In the meantime any anxiety can be addressed while the workup resumes. Psychiatrists have a strong training in neurology. And they can become your best ally.
MRI's can certainly be negative early in MS. Therefore, your neurologist should be planning a repeat series in 3 to 6 months. When there are symptoms and physical exam signs suggestive of an underlying demyelinating disease such as MS or CIDP, but the MRI doesn't help, the next appropriate steps in the work up are a spinal tap and evoked potentials. I would say you need both of those.
If you are heavy (I am) the tap can be done under fluoroscopy in the X-ray department. Mine was absolutely painless. The fluid can contain a lot of information about several neurological disease.
I have more to say, but need to do something else right now. If you would give us a little more info, maybe we can help.
Quix
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