Aa
New Here
I don't have a question... Just wanted to introduce myself.
I got sick at the end of May, and it was a rough summer. I'm still sick. My symptoms include fatigue, muscle weakness, muscle spasticity, mild gait issues, mild balance issues, mild bladder issues, confusion, tingling, pins and needles, and the occasional "bug" crawling up the back of my thigh. Oh, and some numbness in my right heel and right tingertips. And the tingling and fatigue get MUCH worse if I'm hot. I miss baths.
Neuro #1 did a brain MRI w/ and w/o contrast and "diagnosed" migraines based on the results. White spots. I've never had a migraine, which didn't phase him. I found a primary care doctor, who referred me to another neurologist.
Neuro #2 diagnosed me with MS based on my symptoms and the MRI ordered by Neuro #1. She said I had two classic MS lesions. She explained MS and drew pictures. She discussed the drugs I would be taking. She told me to get a lumbar puncture, C and T-spine MRI, and evoked potentials, that we would meet in a week to discuss things.
I ended up having a CSF leak from the lumbar puncture and got a blood patch on the day I was supposed to see her again, so it was two weeks before I saw her.
On the day of my evoked potentials, I broke down and started crying during the "shock the hands to make them twitch" test--I had received the diagnosis without follow-up support. I was scared. The technician took pity on me, shut the door, and advised me to switch neuros. She said mine was a jerk and her patients don't do well. And that the whole office was shocked that she had diagnosed me without finishing the tests or waiting for the lumbar puncture. And that she has been asked to leave the practice at the end of the month (not because of me). Oh brother! I made an appointment with Neuro #3, who is in the same group as Neuro #2.
However, Neuro #2 called to bug me to come in a see her, so I did. I'm a pleaser. That was on Thursday (today is Monday). She suggested fibromyalgia, isolated something or the other, depression, anxiety, and a nervous breakdown. All I could think was: There's got to be a more professional term than "nervous breakdown." She treated me like a crazy person.
She went over my tests. My lumbar puncture did not show inflammation. My spine MRI was normal. Yes, I had spots on my brain MRI, and am I sure I've never had migraines?
NO!!
However, my visual processing was delayed (evoked potentials), so she sent me to the eye doctor.
Today I saw Neuro #3. She had already reviewed my chart from Neuro #2. She reiterated what Neuro #2 had said: You're crazytown. Oh, and were you sexually or physically abused as a child?
Lesson learned: Don't get a second opinion from within the same practice. Before examining me, she actually said, "I'm sure it won't show anything, but I'll go ahead and examine you."
A few hours after seeing Neuro #3, I got a call from the eye doctor. She had my results. I have left optic nerve pallor. Apparently that means nerve damage, and it confirms MS. The eye doctor asked if Neuro #2 (who had referred me--she didn't know about Neuro #3) had called me. Not yet. She said that Neuro #2 wants me on MS drugs ASAP.
Talk about confusing and crazifying. This is certainly my first major attack (is that what you guys call them?), but looking back, I've had at least three less severe ones. One 18 months ago, one 3 years ago, and one 4 years ago. I had fatigue and weakness; during the most recent one also confusion. Those symptoms are easy to explain away, and I didn't seek medical care.
I think I want to see an MS specialist. Neuro #2 says that she is an MS specialist, that she's a teacher physician at a nearby [large] hospital and lectures all over the country on MS. But she behaved erratically, in my opinion. I don't fully trust her.
Sorry this is so long.
I guess I have a question: should I accept the drugs that Neuro #2 wants to put me on or wait for the MS specialist? I feel like I'm choosing between speed and accuracy.
Neuro #2 mentioned ACTH, copaxone, IVIG, and Nuvigil. I did research Nuvigil and found that Provigil is basically the same and available as a generic. Any thoughts on that or any of the other meds?
I've been getting better for the last few weeks (basically since the lumbar puncture--go figure) but slowly. I can work almost full-time again, though I'm exhausted when I get home and basically do nothing else. I don't want this to happen again! I guess no one does.
I got sick at the end of May, and it was a rough summer. I'm still sick. My symptoms include fatigue, muscle weakness, muscle spasticity, mild gait issues, mild balance issues, mild bladder issues, confusion, tingling, pins and needles, and the occasional "bug" crawling up the back of my thigh. Oh, and some numbness in my right heel and right tingertips. And the tingling and fatigue get MUCH worse if I'm hot. I miss baths.
Neuro #1 did a brain MRI w/ and w/o contrast and "diagnosed" migraines based on the results. White spots. I've never had a migraine, which didn't phase him. I found a primary care doctor, who referred me to another neurologist.
Neuro #2 diagnosed me with MS based on my symptoms and the MRI ordered by Neuro #1. She said I had two classic MS lesions. She explained MS and drew pictures. She discussed the drugs I would be taking. She told me to get a lumbar puncture, C and T-spine MRI, and evoked potentials, that we would meet in a week to discuss things.
I ended up having a CSF leak from the lumbar puncture and got a blood patch on the day I was supposed to see her again, so it was two weeks before I saw her.
On the day of my evoked potentials, I broke down and started crying during the "shock the hands to make them twitch" test--I had received the diagnosis without follow-up support. I was scared. The technician took pity on me, shut the door, and advised me to switch neuros. She said mine was a jerk and her patients don't do well. And that the whole office was shocked that she had diagnosed me without finishing the tests or waiting for the lumbar puncture. And that she has been asked to leave the practice at the end of the month (not because of me). Oh brother! I made an appointment with Neuro #3, who is in the same group as Neuro #2.
However, Neuro #2 called to bug me to come in a see her, so I did. I'm a pleaser. That was on Thursday (today is Monday). She suggested fibromyalgia, isolated something or the other, depression, anxiety, and a nervous breakdown. All I could think was: There's got to be a more professional term than "nervous breakdown." She treated me like a crazy person.
She went over my tests. My lumbar puncture did not show inflammation. My spine MRI was normal. Yes, I had spots on my brain MRI, and am I sure I've never had migraines?
NO!!
However, my visual processing was delayed (evoked potentials), so she sent me to the eye doctor.
Today I saw Neuro #3. She had already reviewed my chart from Neuro #2. She reiterated what Neuro #2 had said: You're crazytown. Oh, and were you sexually or physically abused as a child?
Lesson learned: Don't get a second opinion from within the same practice. Before examining me, she actually said, "I'm sure it won't show anything, but I'll go ahead and examine you."
A few hours after seeing Neuro #3, I got a call from the eye doctor. She had my results. I have left optic nerve pallor. Apparently that means nerve damage, and it confirms MS. The eye doctor asked if Neuro #2 (who had referred me--she didn't know about Neuro #3) had called me. Not yet. She said that Neuro #2 wants me on MS drugs ASAP.
Talk about confusing and crazifying. This is certainly my first major attack (is that what you guys call them?), but looking back, I've had at least three less severe ones. One 18 months ago, one 3 years ago, and one 4 years ago. I had fatigue and weakness; during the most recent one also confusion. Those symptoms are easy to explain away, and I didn't seek medical care.
I think I want to see an MS specialist. Neuro #2 says that she is an MS specialist, that she's a teacher physician at a nearby [large] hospital and lectures all over the country on MS. But she behaved erratically, in my opinion. I don't fully trust her.
Sorry this is so long.
I guess I have a question: should I accept the drugs that Neuro #2 wants to put me on or wait for the MS specialist? I feel like I'm choosing between speed and accuracy.
Neuro #2 mentioned ACTH, copaxone, IVIG, and Nuvigil. I did research Nuvigil and found that Provigil is basically the same and available as a generic. Any thoughts on that or any of the other meds?
I've been getting better for the last few weeks (basically since the lumbar puncture--go figure) but slowly. I can work almost full-time again, though I'm exhausted when I get home and basically do nothing else. I don't want this to happen again! I guess no one does.
Glad to hear you had some validation on the hearing issue, your post did the same for me :) Interesting to know that you too are having a long flare. Mine has been four months as well.
Have your symptoms spread and worsened with intensity steadily, or pretty much stayed the same? Have they told you that you will have to remitt and re-flare before they will consider treatment? I am getting to the point where I think my "flare" is not going to stop on it's own. I think that this is longer than most flare up periods based on what I have been reading. Has your doctor adressed that issue with you?
Kari
Have your symptoms spread and worsened with intensity steadily, or pretty much stayed the same? Have they told you that you will have to remitt and re-flare before they will consider treatment? I am getting to the point where I think my "flare" is not going to stop on it's own. I think that this is longer than most flare up periods based on what I have been reading. Has your doctor adressed that issue with you?
Kari
Mary hit some great points here.... especialy about starting a new post/discussion/thread so it is sure to be read.
good luck with the next MRI.
Lulu
good luck with the next MRI.
Lulu
The most common cause of urinary tract infections in people with MS is a failure to completely empty the bladder. You may not be able to tell if urine is left behind when you are finished. There is special testing to check for it if infections become a common thing somewhere along the way.
Once your antibiotic is finished you should ask the doctor to run another culture on your urine (if it doesn't do it all on his own) to make sure it is completely cleared. It isn't completely unusual to need a second course of antibiotic. Infections that don't completely clear from the urine can make a short and speedy ascent into the kidney and blood stream where it is possible for bacteria to cause a good deal of harm.
UTIs are another thing that can make symptoms flare. In fact, whenever you get a flare the first thing you should do is have a urinalysis and culture run. Yup! It's that common and close of a relationship. I would want at least the dip stick urine test done before taking any IVSM.
Some people find that taking cranberry fruit capsules can help to prevent UTIs. They may keep the urine acidic and they might keep bacteria from 'sticking' to the urethra. They CANNOT be used to TREAT a UTI and you can't get enough cranberry in juice form to get the preventive properties the capsules offer. They are widely available in stores or online.
A little tidbit about balance issues. You might be surprised as you find out how much energy it takes to maintain balance. Have you noticed you can go further with less muscle or general fatigue if you are pushing a cart? The simple act of walking with a cane or walking stick can help you go further.
It's hard for some people to clear the emotional hurdles related to using a cane initially. The day each of us is able to see a cane as an enabling tool rather than an embarrassment is the day we win back a little bit of our freedom.
Just remember, using any aid today doesn't mean you have to use it every day from that day on. Right now, I use my cane mostly when I expect I might need to walk outside in the rain, at night or on uneven surfaces. I've fallen in those circumstances in the past but never when I was using the cane. It doesn't work as well on longer distances right now because my arm gets weak and my shoulder muscles begin to spasm after a few minutes of use.
As you learn about MS from us here you might want to also consider contacting your local chapter of the MS Society. They have programs to help people newly diagnosed with MS. Many also have lending libraries of books and videos. They will pay postage both ways so you can review lots of material at no cost.
I'll stop here and try to keep you underwhelmed. As you have new questions you might want to think about starting a new thread with a new title. We are not always very good at coming back to the places we have already left answers to see what has developed.
By the way, it sounds like you are doing a wonderful job of getting your resources and care lined up. Keep up the wonderful job you have started!
Mary
Once your antibiotic is finished you should ask the doctor to run another culture on your urine (if it doesn't do it all on his own) to make sure it is completely cleared. It isn't completely unusual to need a second course of antibiotic. Infections that don't completely clear from the urine can make a short and speedy ascent into the kidney and blood stream where it is possible for bacteria to cause a good deal of harm.
UTIs are another thing that can make symptoms flare. In fact, whenever you get a flare the first thing you should do is have a urinalysis and culture run. Yup! It's that common and close of a relationship. I would want at least the dip stick urine test done before taking any IVSM.
Some people find that taking cranberry fruit capsules can help to prevent UTIs. They may keep the urine acidic and they might keep bacteria from 'sticking' to the urethra. They CANNOT be used to TREAT a UTI and you can't get enough cranberry in juice form to get the preventive properties the capsules offer. They are widely available in stores or online.
A little tidbit about balance issues. You might be surprised as you find out how much energy it takes to maintain balance. Have you noticed you can go further with less muscle or general fatigue if you are pushing a cart? The simple act of walking with a cane or walking stick can help you go further.
It's hard for some people to clear the emotional hurdles related to using a cane initially. The day each of us is able to see a cane as an enabling tool rather than an embarrassment is the day we win back a little bit of our freedom.
Just remember, using any aid today doesn't mean you have to use it every day from that day on. Right now, I use my cane mostly when I expect I might need to walk outside in the rain, at night or on uneven surfaces. I've fallen in those circumstances in the past but never when I was using the cane. It doesn't work as well on longer distances right now because my arm gets weak and my shoulder muscles begin to spasm after a few minutes of use.
As you learn about MS from us here you might want to also consider contacting your local chapter of the MS Society. They have programs to help people newly diagnosed with MS. Many also have lending libraries of books and videos. They will pay postage both ways so you can review lots of material at no cost.
I'll stop here and try to keep you underwhelmed. As you have new questions you might want to think about starting a new thread with a new title. We are not always very good at coming back to the places we have already left answers to see what has developed.
By the way, it sounds like you are doing a wonderful job of getting your resources and care lined up. Keep up the wonderful job you have started!
Mary
This thread is getting soooo long....
I called and the machine is 1.5T. I googled and found a place not too far away that has a 3T machine. Called them and have an appointment for tomorrow afternoon.
Hm, that means my original brain MRI was on a machine less than 1.5T. Because my neuro said that place has a weaker machine the place I just found out has 1.5T (which is where I had my spine MRI with contrast).
Seriously wish I had known this stuff in June. But glad to know it now!
I called and the machine is 1.5T. I googled and found a place not too far away that has a 3T machine. Called them and have an appointment for tomorrow afternoon.
Hm, that means my original brain MRI was on a machine less than 1.5T. Because my neuro said that place has a weaker machine the place I just found out has 1.5T (which is where I had my spine MRI with contrast).
Seriously wish I had known this stuff in June. But glad to know it now!
Thanks for your input. That's a good point about the summer heat. Heat definitely makes me more tired and tingly.
I feel like I'm getting better in spite of doctors rather than because of them. The LP took me a week to recover from, with the spinal headache and all. Lack of sleep from stress and anxiety about my future with MS made me much worse. I'm recognizing that sleep is really key. I guess it's not anyone's fault that I got anxious after hearing the diagnosis. The solumedrol made me worse, so then I had to recover from that. Nuvigil. Then the UTI which I'm still not sure why I got.
But I've been much better the last two days. The antibiotics are doing their thing. I've gotten plenty of sleep and tried to take it easy. My brain has been clearer. I get the forgetful moments and the confusion... How do I log in to the system at work? Oh right, same way I've done it for three years. For some reason "employer" didn't make sense to me in that moment. And I have difficulty with comprehension of my second language (which I use every day). But I have LESS of those moments when I've gotten enough sleep. You are so right about that!
I had a lot of aching early on. I wonder if it's because I was pushing myself to do everything I normally do. If I am active, I will get achy quickly. If I chill and try not to walk too much, I don't get achy. Except with the weird "cord pulled tight" feeling behind my knee.
Now that I'm getting enough sleep and taking it easy as far as work, my main problem is the weakness and burning pain in my left leg/foot. Otherwise I've been pretty darned functional for the last two days. Knock wood, I wonder if I might be coming out of this?
I wondered that about the guy in November. Wish I could see him now. Hopefully he will take my new PCP's findings seriously. He is concerned about the weakness in my left leg and my balance issues. Balance issues don't bother me in my everyday life... they're not bad during the daytime... but they are there. Stairs are kind of hard. But I just be careful.
I think I'm accommodating myself pretty well and figuring out how to make it better not worse. And I think I'm actually getting a little better. I hope it's not just wishful thinking!
Oh, the next MRI will be with and without contrast (same as before). I don't know the strength of the magnet. I was surprised that info was not in the reports from the radiologists before. I will call the place and ask. Thank you, that is such a good point.
You are some smart, helpful people! I appreciate it.
I feel like I'm getting better in spite of doctors rather than because of them. The LP took me a week to recover from, with the spinal headache and all. Lack of sleep from stress and anxiety about my future with MS made me much worse. I'm recognizing that sleep is really key. I guess it's not anyone's fault that I got anxious after hearing the diagnosis. The solumedrol made me worse, so then I had to recover from that. Nuvigil. Then the UTI which I'm still not sure why I got.
But I've been much better the last two days. The antibiotics are doing their thing. I've gotten plenty of sleep and tried to take it easy. My brain has been clearer. I get the forgetful moments and the confusion... How do I log in to the system at work? Oh right, same way I've done it for three years. For some reason "employer" didn't make sense to me in that moment. And I have difficulty with comprehension of my second language (which I use every day). But I have LESS of those moments when I've gotten enough sleep. You are so right about that!
I had a lot of aching early on. I wonder if it's because I was pushing myself to do everything I normally do. If I am active, I will get achy quickly. If I chill and try not to walk too much, I don't get achy. Except with the weird "cord pulled tight" feeling behind my knee.
Now that I'm getting enough sleep and taking it easy as far as work, my main problem is the weakness and burning pain in my left leg/foot. Otherwise I've been pretty darned functional for the last two days. Knock wood, I wonder if I might be coming out of this?
I wondered that about the guy in November. Wish I could see him now. Hopefully he will take my new PCP's findings seriously. He is concerned about the weakness in my left leg and my balance issues. Balance issues don't bother me in my everyday life... they're not bad during the daytime... but they are there. Stairs are kind of hard. But I just be careful.
I think I'm accommodating myself pretty well and figuring out how to make it better not worse. And I think I'm actually getting a little better. I hope it's not just wishful thinking!
Oh, the next MRI will be with and without contrast (same as before). I don't know the strength of the magnet. I was surprised that info was not in the reports from the radiologists before. I will call the place and ask. Thank you, that is such a good point.
You are some smart, helpful people! I appreciate it.
I'm awfully late getting in on this BC but still offer a sincere welcome. After reading over everything here are a few thoughts.
Maybe the flare has lasted "so long" because it has been a long, hot summer. It could be you are feeling better now that cooler weather is giving us a break. I think that could be a real plus btw when it comes to teaching or participating in winter sports.
It doesn't matter how good or bad a neuro is if they are a poor fit for you. #2 sounds like such a poor fit that she can do little more than rub you raw.
Try not to be so hard on yourself about 'still' struggling with anxiety or adjustments to living with the new MS diagnosis. This first year is ESPECIALLY tough. Even after that most of us find the ride to be uneven.
Also be careful about jumping to conclussions about MS being responsible for your 'cognitive changes'. You admit to stress/anxiety and fatigue. Both of these things are very common, very understandable and very capable of causing lapses in concentration or focus that can end up causing us to believe we are losing IT - be it function or sanity.
I wondered about those muscle aches you mentioned and their relation to MS. MS can get muscles feeling weak and useless pretty quick. It doesn't usually make them ache. Your new PCP might be correct in thinking there is something more going on.
Since finances are a potential problem you might want to try a drug called amantadine before going to Provigil or Nuvigil. It is a generic drug normally used for Parkinson's. It can cause drowsiness in non-MS patients but some people with MS find it helpful to fight fatigue.
That's all I can remember from what I read. I hope you continue to feel like your sysptoms are clearing (even though the guy you see in November will almost surely want to see some evidence he can examine for himslef). It's interesting your primary is reordering MRI. Do you know how he ordered them to be done and the strength of the magnet in the machine that will be used this time around? Remember to ask for a copy on CD so you have it to take to the November appointment.
Good to have you with us. Wish the reason was fun-er.
Mary
Maybe the flare has lasted "so long" because it has been a long, hot summer. It could be you are feeling better now that cooler weather is giving us a break. I think that could be a real plus btw when it comes to teaching or participating in winter sports.
It doesn't matter how good or bad a neuro is if they are a poor fit for you. #2 sounds like such a poor fit that she can do little more than rub you raw.
Try not to be so hard on yourself about 'still' struggling with anxiety or adjustments to living with the new MS diagnosis. This first year is ESPECIALLY tough. Even after that most of us find the ride to be uneven.
Also be careful about jumping to conclussions about MS being responsible for your 'cognitive changes'. You admit to stress/anxiety and fatigue. Both of these things are very common, very understandable and very capable of causing lapses in concentration or focus that can end up causing us to believe we are losing IT - be it function or sanity.
I wondered about those muscle aches you mentioned and their relation to MS. MS can get muscles feeling weak and useless pretty quick. It doesn't usually make them ache. Your new PCP might be correct in thinking there is something more going on.
Since finances are a potential problem you might want to try a drug called amantadine before going to Provigil or Nuvigil. It is a generic drug normally used for Parkinson's. It can cause drowsiness in non-MS patients but some people with MS find it helpful to fight fatigue.
That's all I can remember from what I read. I hope you continue to feel like your sysptoms are clearing (even though the guy you see in November will almost surely want to see some evidence he can examine for himslef). It's interesting your primary is reordering MRI. Do you know how he ordered them to be done and the strength of the magnet in the machine that will be used this time around? Remember to ask for a copy on CD so you have it to take to the November appointment.
Good to have you with us. Wish the reason was fun-er.
Mary
I just read through this and the one word that struck me out of it all was VALIDATION> so true. I am new here too and just having someone say agree that they have had the same symptoms is very helpful.
Oh, and the internist wondered if I have primary progressive MS... since it's been four months. Long flare.
I think it's funny that docs go straight for the psychogenic explanation. Sure, we've all heard of the rare case of someone paralyzed for purely psychiatric reasons... But come on, play the odds. If 99% of people (or even 80%) have a physical cause for their symptoms, maybe physical causes should be where your mind goes first. Sure, consider the off chance that it might be psychogenic. But give us the benefit of the doubt!
I mentioned the fluttery/warping sound to an audiologist once when I was in grad school, and she gave me the look. That was seven years ago, and I've never mentioned it to anyone since. Until that forum post the other day. It's the most amazing feeling when someone else shares an unusual symptom. Validation.
I think it's funny that docs go straight for the psychogenic explanation. Sure, we've all heard of the rare case of someone paralyzed for purely psychiatric reasons... But come on, play the odds. If 99% of people (or even 80%) have a physical cause for their symptoms, maybe physical causes should be where your mind goes first. Sure, consider the off chance that it might be psychogenic. But give us the benefit of the doubt!
I mentioned the fluttery/warping sound to an audiologist once when I was in grad school, and she gave me the look. That was seven years ago, and I've never mentioned it to anyone since. Until that forum post the other day. It's the most amazing feeling when someone else shares an unusual symptom. Validation.
I hear you on the depression thing. It's really hard for me to accept that your mind is creating ALL of these symptoms. I have experienced the loud noise in my ears, and feeling like my hearing had "dropped" it happened right after my LP, which consequently resulted in a blood patch as well. Anyhow, I did mention it to my doctor and I got the "you are out of your flippin mind" look... you would think that after dealing with neuro patients for any length of time, no symptom would suprise them or discredit you. I totally feel your frustration and have come to the determination that in these difficult times maybey the only people that can offer us solace our in this forum. No one else can truly undestand unless they've been there. I hope you come to the other side of the tunnel soon :)
The new PCP seemed good! I think I'll be able to talk openly with him.
He questioned the diagnosis--not in an "I don't think you have MS" way, more like making sure it was correct. He wanted to know if the ophthalmologist was sure about the optic neuritis. Haha. I guess she was. She's been a pain in the behind otherwise, not believing me about my blurry vision last week--she is definitely not the type to say I have something unless I definitely have it.
He noted weakness in my left leg and was concerned about that. He noted balance issues. And he pressed on some places on my back and knee, which sometimes hurt A LOT. He said that's wouldn't be from MS. He didn't say everything that he was thinking but I got the gist that he thinks it's "MS plus." Well, I'm glad he didn't just assume any problem I might have would be MS. Like write it off.
He increased my gabapentin. Hopefully that decreases the burning in my feet.
He wants me to get another brain MRI and see him again next week. So we'll talk more then.
It was a good visit.
He questioned the diagnosis--not in an "I don't think you have MS" way, more like making sure it was correct. He wanted to know if the ophthalmologist was sure about the optic neuritis. Haha. I guess she was. She's been a pain in the behind otherwise, not believing me about my blurry vision last week--she is definitely not the type to say I have something unless I definitely have it.
He noted weakness in my left leg and was concerned about that. He noted balance issues. And he pressed on some places on my back and knee, which sometimes hurt A LOT. He said that's wouldn't be from MS. He didn't say everything that he was thinking but I got the gist that he thinks it's "MS plus." Well, I'm glad he didn't just assume any problem I might have would be MS. Like write it off.
He increased my gabapentin. Hopefully that decreases the burning in my feet.
He wants me to get another brain MRI and see him again next week. So we'll talk more then.
It was a good visit.
It's true there is always someone worse off than you, but your symptoms and problems are still real and valid and deserve to be taken seriously, especially anything that affects how you feel and function throughout your day. On the other hand, don't feel bad about feeling occasional disgust with healthy people who complain about small things. It is a natural reaction! and you will no doubt learn to put all those feelings in perspective.
Over time I'm sure you will feel less anxious, less fearful, and more positive as you get used to your new reality. I hope you appt. went well!
Nancy T.
P.S. Did you get the private message I sent you regarding hearing/ABR?
Over time I'm sure you will feel less anxious, less fearful, and more positive as you get used to your new reality. I hope you appt. went well!
Nancy T.
P.S. Did you get the private message I sent you regarding hearing/ABR?
Just to say fingers crossed for your appointment tomorrow and hope the new PCP is understanding and someone you can talk to honestly and openly without feeling that you have to hold back. Good luck and let us know how you get on
Sarah x
Sarah x
Thanks, Nancy. I don't know why it makes me feel better to have someone say that it's normal to feel anxiety or depression about a serious medical condition... seems like it's just common sense... but it does help.
I saw a shrink for the first time yesterday, and she totally confirmed that. She mostly listened to everything that has happened (took notes, lol). I'm looking forward to seeing her again and getting down to business--I'm still struggling with anxiety sometimes, although at least I'm able to sleep now. And FEAR. Fear is big for me right now.
I've always been a pretty positive person and tend to look on the bright side. I hope I can get back to being that way. I'm still very up and down with my emotions.
Sometimes people complain about things like they are tired after working all day and then going to school or that their arm is sore because they helped chop down a tree in the backyard. I feel disgusted with them. And then I feel badly for that! It's just hard to identify with "normal" people for now.
On the other hand, I know that at this moment there are thousands of women and children in sex trafficking or other abusive, horrible situations... My troubles pale in comparison to theirs. Frankly, my troubles pale in comparison to those of other people on this forum. But I'm used to having basically no physical problems--oh, my back hurt with my period, wah.
I'm looking forward to seeing a new PCP on Tuesday. He comes very highly recommended by several friends, including one who is super high strung. I am very hopeful that he will be the guy for me.
I saw a shrink for the first time yesterday, and she totally confirmed that. She mostly listened to everything that has happened (took notes, lol). I'm looking forward to seeing her again and getting down to business--I'm still struggling with anxiety sometimes, although at least I'm able to sleep now. And FEAR. Fear is big for me right now.
I've always been a pretty positive person and tend to look on the bright side. I hope I can get back to being that way. I'm still very up and down with my emotions.
Sometimes people complain about things like they are tired after working all day and then going to school or that their arm is sore because they helped chop down a tree in the backyard. I feel disgusted with them. And then I feel badly for that! It's just hard to identify with "normal" people for now.
On the other hand, I know that at this moment there are thousands of women and children in sex trafficking or other abusive, horrible situations... My troubles pale in comparison to theirs. Frankly, my troubles pale in comparison to those of other people on this forum. But I'm used to having basically no physical problems--oh, my back hurt with my period, wah.
I'm looking forward to seeing a new PCP on Tuesday. He comes very highly recommended by several friends, including one who is super high strung. I am very hopeful that he will be the guy for me.
Re depression and anxiety: I never knew what those were until the day I walked out of a neuro's office 11 years ago having heard him essentially tell me I had MS.
First I learned about fear. (The punch of fear in your stomach for weeks afterward, whenever you think about it.) Weeks later he told me I didn't have MS (because of a non-MSy MRI, not explaining why he said "MS" earlier even though he'd had in his hand a "normal MRI" report done a year earlier after a sudden hearing loss). No explanation for his contradiction (like your doc).
A year later I returned and he told me I had "medical student's disease" and I had to just "let it go," "we're into the whole mind-body thing now," he said. That's when I became a close personal friend of anxiety. What do I do now? Why did he say that? I KNOW something's wrong, but I'm not allowed to talk to my doctors and tell them my symptoms?
After another year or two, getting a second opinion, being slammed down by a vicious PCP, etc., that's when I learned what depression was. The next few years were very hard (though I finally just got over the iatrogenic psychiatric crap).
Having psychiatric diagnoses slapped on you because of NORMAL anxiety (upon being told you have a progressive, potentially disabling disease) is so outlandishly stupid that I can't believe doctors haven't figured it out yet.
It is normal to have anxiety and depression with a chronic disease. Doctors all know this. But STUPID, CLUELESS doctors act as if (treat you as if) the anxiety and depression are CAUSING your symptoms. I just don't get it.
(OK, I know that anxiety and depression can cause some physical symptoms and problems, but the PROBLEM is that doctors try to make you feel as if the anxiety and depression are the underlying problem instead of a normal reaction.)
I'll stop now. I hope your appointment in November turns out to be a relief in terms of getting a GOOD doctor, because your current neuro is a BAD doctor.
There ARE a few good doctors out there. I had unhelpful or awful PCPs for many years and gave up on finding a good one... but I FINALLY did, and it takes a HUGE burden off you when you find a normal, reasonable, knowledgeable doctor. So don't give up hope on that score--if *I* could find a good doctor, anyone can. :) (I still don't have a good neuro but have given up on getting a diagnosis of any kind.)
Good luck!
Nancy T.
First I learned about fear. (The punch of fear in your stomach for weeks afterward, whenever you think about it.) Weeks later he told me I didn't have MS (because of a non-MSy MRI, not explaining why he said "MS" earlier even though he'd had in his hand a "normal MRI" report done a year earlier after a sudden hearing loss). No explanation for his contradiction (like your doc).
A year later I returned and he told me I had "medical student's disease" and I had to just "let it go," "we're into the whole mind-body thing now," he said. That's when I became a close personal friend of anxiety. What do I do now? Why did he say that? I KNOW something's wrong, but I'm not allowed to talk to my doctors and tell them my symptoms?
After another year or two, getting a second opinion, being slammed down by a vicious PCP, etc., that's when I learned what depression was. The next few years were very hard (though I finally just got over the iatrogenic psychiatric crap).
Having psychiatric diagnoses slapped on you because of NORMAL anxiety (upon being told you have a progressive, potentially disabling disease) is so outlandishly stupid that I can't believe doctors haven't figured it out yet.
It is normal to have anxiety and depression with a chronic disease. Doctors all know this. But STUPID, CLUELESS doctors act as if (treat you as if) the anxiety and depression are CAUSING your symptoms. I just don't get it.
(OK, I know that anxiety and depression can cause some physical symptoms and problems, but the PROBLEM is that doctors try to make you feel as if the anxiety and depression are the underlying problem instead of a normal reaction.)
I'll stop now. I hope your appointment in November turns out to be a relief in terms of getting a GOOD doctor, because your current neuro is a BAD doctor.
There ARE a few good doctors out there. I had unhelpful or awful PCPs for many years and gave up on finding a good one... but I FINALLY did, and it takes a HUGE burden off you when you find a normal, reasonable, knowledgeable doctor. So don't give up hope on that score--if *I* could find a good doctor, anyone can. :) (I still don't have a good neuro but have given up on getting a diagnosis of any kind.)
Good luck!
Nancy T.
Phone rings that are not there? I don't know but I can direct you to a neuro who will quickly diagnose you with a psychiatric condition. ;)
Tinnitus is hard for me to describe. It's like the high-pitched tones on a hearing test.
And the paradox thing.. http://www.hopkinsmedicine.org/news/publications/neurologic/spring_2010/ms_more_than_counting_lesions
Tinnitus is hard for me to describe. It's like the high-pitched tones on a hearing test.
And the paradox thing.. http://www.hopkinsmedicine.org/news/publications/neurologic/spring_2010/ms_more_than_counting_lesions
so are we saying if you hear phone rings that are "not there", this is tinnitus? and perhaps connected with MS
I emailed my friend's cochlear implant audiologist about my hearing issues... Nice to have connections. :)
He said:
as you are probably more aware of then I, with MS there's the issue with the mylin sheath on your nerve which acts as insulation around the nerve keeping the impulses contained. (I'm sure I am WAY oversimplifying it, please forgive me).
With tinnitus, any impulses received to the brain by the auditory nerve that are outside of a normal stimulation pattern could be perceived as a ringing.
So, yes, I could see how the tinnitus you are experiencing is within the possibility of the MS. You should get your hearing tested, if you haven't already done so, to rule that out as well.
He said:
as you are probably more aware of then I, with MS there's the issue with the mylin sheath on your nerve which acts as insulation around the nerve keeping the impulses contained. (I'm sure I am WAY oversimplifying it, please forgive me).
With tinnitus, any impulses received to the brain by the auditory nerve that are outside of a normal stimulation pattern could be perceived as a ringing.
So, yes, I could see how the tinnitus you are experiencing is within the possibility of the MS. You should get your hearing tested, if you haven't already done so, to rule that out as well.
Thank you. Neuro #2 is changeable and snappish, but I guess I'm stuck with her for a couple of months. I feel like she's better than someone who doesn't believe I have MS at all, like Neuro #1 and Neuro #3.
I guess I feel like I'm stuck with her until November. Unless I look for another neuro before that?
Is a bad neuro better than no neuro?
Maybe I shouldn't say she's bad... "not-good."
She questions the number of symptoms I have. It's not that she thinks MS can't cause them. She just doesn't think *I* should be having them, based on the number of lesions seen on MRI. I would like to show her the "clinicoradiological paradox" explanation from the MS specialist's website!
I definitely am hesitant to tell her one of my symptoms. I have had some tinnitus, and a couple of times my hearing dropped a bit but was back within 10 minutes. It started happening around March or April, but my attack didn't start until the end of May. It doesn't happen very often. I just wanted to ask if it might be the MS or maybe it's not related. But I haven't asked her. She'll probably say depression causes that, just like it causes the sensory disturbances.
Depression... gosh. And here I am hoping I can still teach skiing this year like I planned... and planning how to handle my beloved beach days with my new heat sensitivity... and itching to visit "my" child (I was her nanny from her infancy to age 5, and now she'll 11!). I am totally interested in everything I always was, and I can't wait to have the energy to do it all again. Or most of it. I'm not sitting around because I'm depressed. I'm sitting around because when I do too much (too much being half of my normal activities, ha), my body says, "Noooo... Let's rest."
At least she didn't try to say that depression caused the optic neuritis. ;)
I guess I feel like I'm stuck with her until November. Unless I look for another neuro before that?
Is a bad neuro better than no neuro?
Maybe I shouldn't say she's bad... "not-good."
She questions the number of symptoms I have. It's not that she thinks MS can't cause them. She just doesn't think *I* should be having them, based on the number of lesions seen on MRI. I would like to show her the "clinicoradiological paradox" explanation from the MS specialist's website!
I definitely am hesitant to tell her one of my symptoms. I have had some tinnitus, and a couple of times my hearing dropped a bit but was back within 10 minutes. It started happening around March or April, but my attack didn't start until the end of May. It doesn't happen very often. I just wanted to ask if it might be the MS or maybe it's not related. But I haven't asked her. She'll probably say depression causes that, just like it causes the sensory disturbances.
Depression... gosh. And here I am hoping I can still teach skiing this year like I planned... and planning how to handle my beloved beach days with my new heat sensitivity... and itching to visit "my" child (I was her nanny from her infancy to age 5, and now she'll 11!). I am totally interested in everything I always was, and I can't wait to have the energy to do it all again. Or most of it. I'm not sitting around because I'm depressed. I'm sitting around because when I do too much (too much being half of my normal activities, ha), my body says, "Noooo... Let's rest."
At least she didn't try to say that depression caused the optic neuritis. ;)
I also want to welcome you to the boards. This is such a fantastic group of people and wonderful support.
When I saw you wrote the below, it is DEFINITELY a red flag. She should "welcome" any person who you feel that you can trust and to support you and help you with any questions you might have.
2nd, this is the one that is TOTALLY WRONG! I promise you. I have the "creepy crawlies" lots of the time, on my scalp. I was almost embarrassed to ask my Neuro (who is an MSologist), and she said, "oh that is fairly common in MS." It is a sensory problem due to affected nerves.
So, in my opinion, you need to leave her practice. I dont think she fully understands MS, and I hope your appt. in November goes well. You need a good doc.
Ok, thats my 2 cents.
Welcome again,
Michelle
When I saw you wrote the below, it is DEFINITELY a red flag. She should "welcome" any person who you feel that you can trust and to support you and help you with any questions you might have.
2nd, this is the one that is TOTALLY WRONG! I promise you. I have the "creepy crawlies" lots of the time, on my scalp. I was almost embarrassed to ask my Neuro (who is an MSologist), and she said, "oh that is fairly common in MS." It is a sensory problem due to affected nerves.
So, in my opinion, you need to leave her practice. I dont think she fully understands MS, and I hope your appt. in November goes well. You need a good doc.
Ok, thats my 2 cents.
Welcome again,
Michelle
My doctor prescribed Xanax for my anxiety Sometimes I take it every four to six hours all day (However it is rare for me). I can go weeks without needing it then find myself in a mess and need it. If I use 30 pills a month it is extreme for me..Probably more like twenty...
I think I am sometimes resistant to change or the unknown. For example, church is big in my life, and when I'm asked to take a different position, I will usually have a million reasons why I don't want to. Maybe I'm just argumentative or oppositional. ;)
Before this, I've always had some social anxiety. Hate parties. Get nervous when speaking to a group of familiar people BUT have no problem giving presentations to rooms of strangers.
One thing that I've always been VERY anxious about is education and career decisions. I think that would be because of the unknown. Also money. I'm not married and don't have family support--if I can't pay the bills, who will? Money has caused me anxiety for at least 10 years--ever since I graduated from college and realized that money doesn't grow on student loan trees.
I think MS is hitting my two long-term anxiety areas: the unknown and money. The cost of treatment. The sick days I've already used up (and won't be getting more of until next summer). The job I may lose if anyone finds out why I'm taking sick days. Losing my job would mean losing my home.
I work full time plus see a few private clients plus do freelance work in a related field. I'm a busy girl. But right now I can't handle that kind of schedule. So that brings me back around to the money stress.
Those are the thoughts that make me anxious. But honestly, what you said made me feel so much better. I feel so lucky to have been diagnosed early, during my first major attack. I have my vision; I can walk. I just need to keep it that way, and get back enough energy to work full-time.
The only symptoms that really bother me are the fatigue and the sore, crampy muscles. The rest of it... Well, I'm nerdy, so I'm sort of like my own private science experiment. Hm, what will happen next? Pins and needles, ah, now that area is becoming numb, that makes sense. I find the cognitive difficulties sometimes frustrating but mostly hilarious. I put my socks in the trash instead of the hamper. I made myself a sandwich to bring for lunch and put it on the coffee table in the living room instead of in the lunch bag in the kitchen (why did I even leave the kitchen?). I started to pump hand soap onto my toothbrush. Daily comedy!
When I first go the MS diagnosis, I freaked out for a week and didn't work through it. When I finally confronted my feeling, it took me two days to feel back to my everyday self. When #2 suggested that I might not have MS, I knew she was wrong deep down, but I started right into denial.
Getting the eye results yesterday and being given the diagnosis yet again seems to have started the anxiety process over. It wasn't as bad this time, since I knew what to do. I did really well this afternoon and evening. I'm sure things will be up and down, but generally I'm doing pretty well again.
I guess I have a question: If you have anxiety caused by MS, do you have it all the time or just while in exacerbations? Do you take medicine for it all the time?
Before this, I've always had some social anxiety. Hate parties. Get nervous when speaking to a group of familiar people BUT have no problem giving presentations to rooms of strangers.
One thing that I've always been VERY anxious about is education and career decisions. I think that would be because of the unknown. Also money. I'm not married and don't have family support--if I can't pay the bills, who will? Money has caused me anxiety for at least 10 years--ever since I graduated from college and realized that money doesn't grow on student loan trees.
I think MS is hitting my two long-term anxiety areas: the unknown and money. The cost of treatment. The sick days I've already used up (and won't be getting more of until next summer). The job I may lose if anyone finds out why I'm taking sick days. Losing my job would mean losing my home.
I work full time plus see a few private clients plus do freelance work in a related field. I'm a busy girl. But right now I can't handle that kind of schedule. So that brings me back around to the money stress.
Those are the thoughts that make me anxious. But honestly, what you said made me feel so much better. I feel so lucky to have been diagnosed early, during my first major attack. I have my vision; I can walk. I just need to keep it that way, and get back enough energy to work full-time.
The only symptoms that really bother me are the fatigue and the sore, crampy muscles. The rest of it... Well, I'm nerdy, so I'm sort of like my own private science experiment. Hm, what will happen next? Pins and needles, ah, now that area is becoming numb, that makes sense. I find the cognitive difficulties sometimes frustrating but mostly hilarious. I put my socks in the trash instead of the hamper. I made myself a sandwich to bring for lunch and put it on the coffee table in the living room instead of in the lunch bag in the kitchen (why did I even leave the kitchen?). I started to pump hand soap onto my toothbrush. Daily comedy!
When I first go the MS diagnosis, I freaked out for a week and didn't work through it. When I finally confronted my feeling, it took me two days to feel back to my everyday self. When #2 suggested that I might not have MS, I knew she was wrong deep down, but I started right into denial.
Getting the eye results yesterday and being given the diagnosis yet again seems to have started the anxiety process over. It wasn't as bad this time, since I knew what to do. I did really well this afternoon and evening. I'm sure things will be up and down, but generally I'm doing pretty well again.
I guess I have a question: If you have anxiety caused by MS, do you have it all the time or just while in exacerbations? Do you take medicine for it all the time?
OOOh - well I do see a bit more of why their are issues w/her. Should of been happy you had someone there with you.
To clarify- anxiety, it greatly varys. It can be mild, and normal like you mention getting upset about MS, and all those potentials.
This may be helpful to you ....Question for ya - Typically (non-disease or illness related), do you have initial fearful, or upsetting reactions to the unknown? If so, that's exactly why you are feeling like you are. It's totally normal. However you typically return to center and gain perspective on things to move forward is what you'll do with MS too.
And, if not - then certainly take the doc up on suggested meds - at least while you get through this initial phase.
What I was mentioning above about the internal inflammation in the CNS and feelings of nervousness we often discuss here are moreso about hypersensitive senses that are physical, not mental - if that makes sense. Not sure you are feeling some of that too and getting a double whammy.
We're all alive here and kicking if that's any consolation. The MS course is not the same for all. And, def. follow-up on that doc about the MS meds. Early is best!
-shell
To clarify- anxiety, it greatly varys. It can be mild, and normal like you mention getting upset about MS, and all those potentials.
This may be helpful to you ....Question for ya - Typically (non-disease or illness related), do you have initial fearful, or upsetting reactions to the unknown? If so, that's exactly why you are feeling like you are. It's totally normal. However you typically return to center and gain perspective on things to move forward is what you'll do with MS too.
And, if not - then certainly take the doc up on suggested meds - at least while you get through this initial phase.
What I was mentioning above about the internal inflammation in the CNS and feelings of nervousness we often discuss here are moreso about hypersensitive senses that are physical, not mental - if that makes sense. Not sure you are feeling some of that too and getting a double whammy.
We're all alive here and kicking if that's any consolation. The MS course is not the same for all. And, def. follow-up on that doc about the MS meds. Early is best!
-shell
Beach, when you read stories about people that can't work or are no longer able to function it is usually because the MS was not caught early. My story goes back a good twenty years before we knew it was MS. The first ten years the symptoms were not so bad and I was too busy raising my family, working and squeezing time in for my art. The next ten years were spent running from specialist to specialist....a neuro being the last...a stupid neuro at that. It would be the 19th year before I saw a real neuro and was dxed.
When MS is caught early and meds are used it usually does stop the damage. Most with MS are NOT in wheelchairs, continue to work, play, raise families, etc. Yes they sometimes flare and need time to recover. Yes they may be fatigued and need to rest or pace themselves. You are in a good place right now...an early dx, meds not to mention how quickly MS drugs are advancing to stop MS in her tracks.
I am here to tell you anxiety surely does make the symptoms worse and be glad your doctor has pointed it out and is willing to treat it. It has been a lifesaver for me.
Keep an open mind. Forget the stories others tell. Yours is much different. On this board most are still working, not in wheelchairs, raising families, going on vacations and enjoying life.
I tell my story because I need to vent. This is a safe place for me to do it. It is not meant for you or any other to think they are gonna land in my spot. The stories are so much unlike each other....and the out comes just as different.
When MS is caught early and meds are used it usually does stop the damage. Most with MS are NOT in wheelchairs, continue to work, play, raise families, etc. Yes they sometimes flare and need time to recover. Yes they may be fatigued and need to rest or pace themselves. You are in a good place right now...an early dx, meds not to mention how quickly MS drugs are advancing to stop MS in her tracks.
I am here to tell you anxiety surely does make the symptoms worse and be glad your doctor has pointed it out and is willing to treat it. It has been a lifesaver for me.
Keep an open mind. Forget the stories others tell. Yours is much different. On this board most are still working, not in wheelchairs, raising families, going on vacations and enjoying life.
I tell my story because I need to vent. This is a safe place for me to do it. It is not meant for you or any other to think they are gonna land in my spot. The stories are so much unlike each other....and the out comes just as different.
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