Aa
Okay, so hubby won't talk to me now.
Hi Everyone:
I feel like I'm going crazy. I think some of you know my story, but I have 20 lesions on brain with all other tests coming back negative. I told my husband the other night that I think the doctors are missing something and that I believe I might have MS and he blew up and refuses to talk to me while I think that....sorry, this is personal but I'm quite upset.
I hope you all don't mind, but I would like to run my symptoms by you (the ones I can recall) and see what you think:
- In March I developed major anxiety along with numbness/tingling under left eye. Then a few days later, my legs/feet were vibrating/tingling, etc. This went on for about three months. At this time, I was put on Prozac for anxiety and all my symptoms dissapeared.
- During that time, for about a week, I was getting a tightening feeling around my bra strap area. I had had my gallbladder removed late January so I wrote it off to being something about that.
- Also during this time, for about two weeks, off and on, I was getting vibrating feelings inside my upper body area. That was strange and scary.
- Late July, I went off the Prozac because it gave me acid reflux. Slowly, the symptoms are returning again along with my anxiety. I have a slight vibration feeling in my left shin and especially notice it when I get anxious or start worrying.
- For the last couple of months, my feet/ankles hurt when I first stand after sitting or sleeping all night. I went to my orthopedic doctor about this because I'm playing a lot of tennis and thought maybe I hurt something, but xrays showed nothing. Is this an MS thing?
- I'm feeling a little tingling back under my left eye again the last few days but then again, I've been worrying like crazy again.
- What in the heck could have caused 20 lesions on my brain???? This is driving me crazy.
- Urinary....I drink a lot of water but when I gotta go, I gotta go....
- My eyeballs.....for example last night while watching tv, I felt for just a minute like someone was twisting my eyeballs in the back of my head. Ouch! No problems at all with my vision.
- Every couple of days, I get sharp shooting pains in my upper right leg. They only last for a second, but they sure grab my attention when they happen. They keep happening for a couple of minutes and then just go away.
- I have NO muscle weakness...
Okay, having said these things, my first two neurologists told me that this is all anxiety (they did not know about the 20 lesions though because I hadn't had the MRI).
Am I going crazy or if it were you, would you pursue this further? I'm supposed to have a follow-up MRI in 6 months. They didn't do an MRI on my T-Spine and I feel like I want one NOW.
I'm fretting because I keep thinking what did I do to cause this to myself..... I just feel like crying. By the way, I'm peri-menopausal so I don't know if this could be affecting my symptoms or not....
I'm sorry for my repeat postings of the same stuff, but I feel like you people are the only people I have to talk too.
Please give me an honest opinion of what you think about my symptoms and if they sound like symptoms of MS.
I feel like I'm going crazy. I think some of you know my story, but I have 20 lesions on brain with all other tests coming back negative. I told my husband the other night that I think the doctors are missing something and that I believe I might have MS and he blew up and refuses to talk to me while I think that....sorry, this is personal but I'm quite upset.
I hope you all don't mind, but I would like to run my symptoms by you (the ones I can recall) and see what you think:
- In March I developed major anxiety along with numbness/tingling under left eye. Then a few days later, my legs/feet were vibrating/tingling, etc. This went on for about three months. At this time, I was put on Prozac for anxiety and all my symptoms dissapeared.
- During that time, for about a week, I was getting a tightening feeling around my bra strap area. I had had my gallbladder removed late January so I wrote it off to being something about that.
- Also during this time, for about two weeks, off and on, I was getting vibrating feelings inside my upper body area. That was strange and scary.
- Late July, I went off the Prozac because it gave me acid reflux. Slowly, the symptoms are returning again along with my anxiety. I have a slight vibration feeling in my left shin and especially notice it when I get anxious or start worrying.
- For the last couple of months, my feet/ankles hurt when I first stand after sitting or sleeping all night. I went to my orthopedic doctor about this because I'm playing a lot of tennis and thought maybe I hurt something, but xrays showed nothing. Is this an MS thing?
- I'm feeling a little tingling back under my left eye again the last few days but then again, I've been worrying like crazy again.
- What in the heck could have caused 20 lesions on my brain???? This is driving me crazy.
- Urinary....I drink a lot of water but when I gotta go, I gotta go....
- My eyeballs.....for example last night while watching tv, I felt for just a minute like someone was twisting my eyeballs in the back of my head. Ouch! No problems at all with my vision.
- Every couple of days, I get sharp shooting pains in my upper right leg. They only last for a second, but they sure grab my attention when they happen. They keep happening for a couple of minutes and then just go away.
- I have NO muscle weakness...
Okay, having said these things, my first two neurologists told me that this is all anxiety (they did not know about the 20 lesions though because I hadn't had the MRI).
Am I going crazy or if it were you, would you pursue this further? I'm supposed to have a follow-up MRI in 6 months. They didn't do an MRI on my T-Spine and I feel like I want one NOW.
I'm fretting because I keep thinking what did I do to cause this to myself..... I just feel like crying. By the way, I'm peri-menopausal so I don't know if this could be affecting my symptoms or not....
I'm sorry for my repeat postings of the same stuff, but I feel like you people are the only people I have to talk too.
Please give me an honest opinion of what you think about my symptoms and if they sound like symptoms of MS.
This whole thing is very anxiety provoking - from the weird symptoms everywhere to the worry about what they are. I can tell you my already existing anxiety problem of 20 years shot up skywards when all of the accumulated symptoms over the last 20 years came on all at once with new things added in - and they all screamed out "MS". It's a terrifying thought in itself and makes your future very uncertain.
My husband's stress level went up along with mine because he knew something was wrong, he was worried, and he was taking on more the household and child rearing responsibilities. He's vacillated between taking it out on me, to taking it out on our son, to crawling inside himself and ignoring everything else. Sometimes he's supportive, and sometimes he's just annoyed and irritable. But in the end, it's so much easier to write it off and say it's all in your head, or anxiety, or something. It might be too much for him to think about, and it could be a protective response to avoid having to deal with heavy emotions right now.
I can tell you that he responds much better when I'm honest and forthright about what's happening and how I feel about it. That seems to bring the best response, and especially when the emotional feelings get tacked on with the symptoms as someone else mentioned above. "My back hurts so bad I can't pick up a grocery bag and I'm scared of what it might be." It makes you vulnerable, and it takes a really closed-off person to respond to vulnerability with anger. Most men respond well to vulnerability in their partners, offering support and compassion.
I know how you feel about the driving yourself crazy thing. But that in itself is what's going to drive you to seek the answers and solutions. Think of it as another way your body is telling you to go find out. Use it productively, and it will bring you to the answers you need. Like scheduling in with your neuro. I'm also wondering why the neuro hasn't commented on the 20 brain lesions.
In the meantime, get a massage or two, or three with someone that insists you do nothing but relax on the table without conversation. It will help your anxiety level, and it's something somebody else does for you in a caring and supportive environment. Once you get back in touch with that relaxation, then it will be easier to recall it when emotions start to run high.
Best wishes on your visit with your neuro. I hope he can give some insight beyond some vague emotional diagnosis. As far as I know, anxiety can't cause brain lesions, but brain lesions can cause anxiety.
My husband's stress level went up along with mine because he knew something was wrong, he was worried, and he was taking on more the household and child rearing responsibilities. He's vacillated between taking it out on me, to taking it out on our son, to crawling inside himself and ignoring everything else. Sometimes he's supportive, and sometimes he's just annoyed and irritable. But in the end, it's so much easier to write it off and say it's all in your head, or anxiety, or something. It might be too much for him to think about, and it could be a protective response to avoid having to deal with heavy emotions right now.
I can tell you that he responds much better when I'm honest and forthright about what's happening and how I feel about it. That seems to bring the best response, and especially when the emotional feelings get tacked on with the symptoms as someone else mentioned above. "My back hurts so bad I can't pick up a grocery bag and I'm scared of what it might be." It makes you vulnerable, and it takes a really closed-off person to respond to vulnerability with anger. Most men respond well to vulnerability in their partners, offering support and compassion.
I know how you feel about the driving yourself crazy thing. But that in itself is what's going to drive you to seek the answers and solutions. Think of it as another way your body is telling you to go find out. Use it productively, and it will bring you to the answers you need. Like scheduling in with your neuro. I'm also wondering why the neuro hasn't commented on the 20 brain lesions.
In the meantime, get a massage or two, or three with someone that insists you do nothing but relax on the table without conversation. It will help your anxiety level, and it's something somebody else does for you in a caring and supportive environment. Once you get back in touch with that relaxation, then it will be easier to recall it when emotions start to run high.
Best wishes on your visit with your neuro. I hope he can give some insight beyond some vague emotional diagnosis. As far as I know, anxiety can't cause brain lesions, but brain lesions can cause anxiety.
Hey Carrie:
How's it going? Let us know how the app't went.
I was reading the Health Pages and thought this one might help you. I wish I had found this years ago.
What I want my family and friends to know
http://www.medhelp.org/user_journals/show/5699/MS-challenge-for-life-
How's it going? Let us know how the app't went.
I was reading the Health Pages and thought this one might help you. I wish I had found this years ago.
What I want my family and friends to know
http://www.medhelp.org/user_journals/show/5699/MS-challenge-for-life-
Yay! Good luck! Make a timeline of your symptoms, and make a list of questions, so you won't forget anything.
Bob has a point, Carrie - a good doctor will treat your symptoms, not write them off to anxiety.
I personally think that neurological problems can cause anxiety. I've had a couple of psychiatric symptoms that went away without any medication, and I'm pretty sure it was the MS! The anxiety was weird, because it seemed to come on without warning. Then I spent three months making this involuntary "TSK!" noise with my mouth (kinda like Tourette's.) I couldn't stop myself, but after three months it went away.
> desimation of time
Hey, that's dissemination in time. What that means is that you've experienced symptoms over a period of time, like the facial tingling or sharp shooting pains in the leg. This demonstrates to the neurologist that this isn't a one-time thing - that your symptoms are relapsing and remitting. Dissemination in space is symptoms in more than one place in your body. For example, if you only had numbness and tingling in your hands, then the doctor is more likely to suspect carpal tunnel than MS. But if you had numbness and tingling in one hand, one foot, and the right side of your face, that would be dissemination in space.
With 20 lesions, a clear LP, and dissemination in time and space of your symptoms, it does sound like you have MS.
I don't konw if anybody's pointed you toward this page yet... It will help answer some of your questions.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36
My hubby tends to worry himself sick about me. Sometimes I don't tell him everything that's going on with me, because then he'll just worry more. Of course, then he's upset that I haven't told him about so-and-so!
I personally think that neurological problems can cause anxiety. I've had a couple of psychiatric symptoms that went away without any medication, and I'm pretty sure it was the MS! The anxiety was weird, because it seemed to come on without warning. Then I spent three months making this involuntary "TSK!" noise with my mouth (kinda like Tourette's.) I couldn't stop myself, but after three months it went away.
> desimation of time
Hey, that's dissemination in time. What that means is that you've experienced symptoms over a period of time, like the facial tingling or sharp shooting pains in the leg. This demonstrates to the neurologist that this isn't a one-time thing - that your symptoms are relapsing and remitting. Dissemination in space is symptoms in more than one place in your body. For example, if you only had numbness and tingling in your hands, then the doctor is more likely to suspect carpal tunnel than MS. But if you had numbness and tingling in one hand, one foot, and the right side of your face, that would be dissemination in space.
With 20 lesions, a clear LP, and dissemination in time and space of your symptoms, it does sound like you have MS.
I don't konw if anybody's pointed you toward this page yet... It will help answer some of your questions.
http://www.medhelp.org/health_pages/Multiple-Sclerosis/Diagnosing-MS---The-McDonald-Criteria-revised-2005/show/370?cid=36
My hubby tends to worry himself sick about me. Sometimes I don't tell him everything that's going on with me, because then he'll just worry more. Of course, then he's upset that I haven't told him about so-and-so!
MS is a disease of the Central Nervous Systems characterized by multiple attacks to different parts of the CNS effecting different parts parts of the body (dissemination in space.) These attacks occur then the symptoms go away (remission) for a period of time before a new attack happens (dissemination in time.) The exception is PPMS where symptoms occur and continue advancing with more attacks one on top of another for at least one year. There is dissemination in space with PPMS, but no dissemination in time.
By definition, you have to have an attack, that attach has to resolve for several weeks and then you have to have a new attack of a different type to meet the "Dissemination in space and time criteria." Too many docs want to look at number of lesion toady and number of lesions in 6 months. That is not what the original intention of the dissemination in space and time criteria was established for.
Bob
By definition, you have to have an attack, that attach has to resolve for several weeks and then you have to have a new attack of a different type to meet the "Dissemination in space and time criteria." Too many docs want to look at number of lesion toady and number of lesions in 6 months. That is not what the original intention of the dissemination in space and time criteria was established for.
Bob
Carrie, I don't know a nice way to say this, so I'll just put it out there. You and I are the same age. My partner is 17 years younger than I am. My partner is dealing with my fatigue, twitching, loss of feeling, confusion, etc. by coming to me and asking: "So, do your doctors have a clue? Do I have a clue? What are your limitations today? Are you going to make sure you tell me when you can or can't do something?" "I have been told to ask for help when I need it, and not to do something that might even remotely result in injury." Pretty mature response for a 31 year old. I mentioned that I had to take Valium before my MRI and the response was "OK, write down the address so I don't get lost and have you there on time."
My partner is scared. Guess I am too, but more frustrated. Maybe you are in the same boat. Maybe you have talk to him about where you are at and where he is at. It's rough for guys, because we don't verbalize fear. We have a tendency to get aggressive towards (read that as attack) those the make us fearful. Hard to attach a disease or unknown disease. For men, it is pretty hard to "cowboy up and grow a pair" when it comes to dealing is sickness or chronic disease processes. I'm speaking as a guy that spent a few years in heath care watching what went on around me.
I hope you can get him to open up a bit. I'll bet he is frustrated about a disease and all the hidden symptoms he can't see. He really wants it to be "in your head." That would be easy to cure. I bet he is terrified that you have something that just strikes fear in him.
He's worried about you, he's worried about him, he's worried about the two of you. That mush worry will wear him down just like it wears you down. Communicate, get a therapist... do what you need to do for the two of you.
Just my male point of view.
Bob
My partner is scared. Guess I am too, but more frustrated. Maybe you are in the same boat. Maybe you have talk to him about where you are at and where he is at. It's rough for guys, because we don't verbalize fear. We have a tendency to get aggressive towards (read that as attack) those the make us fearful. Hard to attach a disease or unknown disease. For men, it is pretty hard to "cowboy up and grow a pair" when it comes to dealing is sickness or chronic disease processes. I'm speaking as a guy that spent a few years in heath care watching what went on around me.
I hope you can get him to open up a bit. I'll bet he is frustrated about a disease and all the hidden symptoms he can't see. He really wants it to be "in your head." That would be easy to cure. I bet he is terrified that you have something that just strikes fear in him.
He's worried about you, he's worried about him, he's worried about the two of you. That mush worry will wear him down just like it wears you down. Communicate, get a therapist... do what you need to do for the two of you.
Just my male point of view.
Bob
Thanks everyone for all your support. I really appreciate it. I've not having a good week with my emotions...feeling very scared which I think is making my symptoms worse.
Bob: Yes, my MRI and all my tests were done at UCSF. I don't think I understand what you mean by "desimation of time". Can you explain that a little more for me.
My symptoms come and go almost every day. Mostly I notice them when I'm anxious or upset and I've been that way all week this week. Today, I'm having cramping in my left thigh. Is this MS? OMG....this is driving my crazy.
Please tell me....with MS, do you normally have symptoms for a week or so and then have them completely go away and be symptom free for a while? If so, I don't think I'm having that because I don't think a week has gone by since March where I haven't felt "something".
I slept for like 9 hours last night and feel absolutely exhausted today. Is that MS? see....this is how I am right now...every little thing.....it's driving me crazy. I'm driving myself crazy.
Thanks again.
Bob: Yes, my MRI and all my tests were done at UCSF. I don't think I understand what you mean by "desimation of time". Can you explain that a little more for me.
My symptoms come and go almost every day. Mostly I notice them when I'm anxious or upset and I've been that way all week this week. Today, I'm having cramping in my left thigh. Is this MS? OMG....this is driving my crazy.
Please tell me....with MS, do you normally have symptoms for a week or so and then have them completely go away and be symptom free for a while? If so, I don't think I'm having that because I don't think a week has gone by since March where I haven't felt "something".
I slept for like 9 hours last night and feel absolutely exhausted today. Is that MS? see....this is how I am right now...every little thing.....it's driving me crazy. I'm driving myself crazy.
Thanks again.
If your husband is not the best support for your appointment can you bring another friend or family member? Sister, mother, broher? when I got diagnosed I was alone and it was scary and shocking for me. From then on I traveled with an entourage of my, then very pregnant sister, my boyfriend, brother in law, and when she got back into the country, my mom, to my appointments. I am now just back to travelling to appointments with my boyfriend, but anything "big" I call in additional support.
I've seen about every type of _ologist, and my exeprience with neuros is the worst. Most of my other specialists were willing to refer me and admit they didn't know.
I've seen about every type of _ologist, and my exeprience with neuros is the worst. Most of my other specialists were willing to refer me and admit they didn't know.
Sometimes we are the ones not communicating with our spouse. For years my husband heard the words "my back hurts". After hearing it year after year he no longer heard me. It was like...."okay another night and her back hurts". The real problem was I blamed myself. Some how it became my fault that I couldn't keep up. I must be out of shape. I didn't work out enough. I wasn't strong enough. I was a big baby about pain. On and on I piled stuff on myself. My fault. So because it was my fault, I kept pushing myself harder and harder.
Until...until that one night I could no longer push. I could no longer pretend. I had been trying to shop for the holidays for my children. I could hardly stand. I made myself walk into the store to walk out in three minutes because my back hurt. After about the third store, I burst into tears in the car. My husband was shocked that it had all been so painful and finally understood. Trying to make it better he offered to get a wheelchair. So, right there in the Walmart parking lot ...this woman that blamed herself let all those hidden emotions out. I cried so hard and so long and lovingly my husband held me.
From that day on (and it would still be another four years until we had a dx) my husband understood. I think we have to be sure we are communicating and not just dropping "hints". There is a huge difference between "my back hurts" and "my back hurts and I am scared".
Until...until that one night I could no longer push. I could no longer pretend. I had been trying to shop for the holidays for my children. I could hardly stand. I made myself walk into the store to walk out in three minutes because my back hurt. After about the third store, I burst into tears in the car. My husband was shocked that it had all been so painful and finally understood. Trying to make it better he offered to get a wheelchair. So, right there in the Walmart parking lot ...this woman that blamed herself let all those hidden emotions out. I cried so hard and so long and lovingly my husband held me.
From that day on (and it would still be another four years until we had a dx) my husband understood. I think we have to be sure we are communicating and not just dropping "hints". There is a huge difference between "my back hurts" and "my back hurts and I am scared".
I never had a LP...My lesions were "classic" MS lesions along with the symptoms and later confirmed by the head MS doc at Cleveland Clinic, so I don't know about the O bands....But, your husband's reaction is clearly fear. He loves you and is afraid for you. Some men just can't handle their wives dealing with something they can not protect them from. So maybe it's not that he's being a jerk, he's just frightened. My husband asked me if I knew I had MS when I married him! But now, even with his illnesses, he shows concern for me in the ways he can...like not griping about dishes not getting done, or slow on the laundry, or my having to stop and lay down. Give him time...
Hello, Carrie,
I've been through "anxiety, depression, chronic fatigue syndrome, fibromyalgia, stress, hypochondriasis, and more".
When my first brain MRI showed lots of lesions and the neuro-radiologist reported "far and away most likely to be multiple sclerosis", I had to step up being and proactive and learning how to work with doctors. Some, like car salesmen, respond better with a male in the room. Others don't want patients that might sound like they know more than they do, or don't trust their word completely. Still others are just right, look, listen, and think, figure things out, communicate well.
Lo and behold, I have MS, diagnosed a year ago, 20 months after that first brain MRI. I also have some lower back/sacroilliac joint issues.
Have you had an MRI of your lumbar spine? Some of what you describe about your legs/feet sounds very familiar. We're the same age; have you had any lower back injuries or pain? Just a thought. Some of my lower leg stuff is from the MS, so it can be confusing.
They point I'm winding my way around to making is that you can have more than one thing going on. I'm trying gentle yoga and some meditation to deal with stress and anxiety that can go with having stuff wrong, as well as just to make myself feel better.
While your hubby's sitting around not talking to you, you could calmly listen to a meditation CD (headset on), or do a few simple yoga stretches (can you take a class?).
Take care,
Kathy
I've been through "anxiety, depression, chronic fatigue syndrome, fibromyalgia, stress, hypochondriasis, and more".
When my first brain MRI showed lots of lesions and the neuro-radiologist reported "far and away most likely to be multiple sclerosis", I had to step up being and proactive and learning how to work with doctors. Some, like car salesmen, respond better with a male in the room. Others don't want patients that might sound like they know more than they do, or don't trust their word completely. Still others are just right, look, listen, and think, figure things out, communicate well.
Lo and behold, I have MS, diagnosed a year ago, 20 months after that first brain MRI. I also have some lower back/sacroilliac joint issues.
Have you had an MRI of your lumbar spine? Some of what you describe about your legs/feet sounds very familiar. We're the same age; have you had any lower back injuries or pain? Just a thought. Some of my lower leg stuff is from the MS, so it can be confusing.
They point I'm winding my way around to making is that you can have more than one thing going on. I'm trying gentle yoga and some meditation to deal with stress and anxiety that can go with having stuff wrong, as well as just to make myself feel better.
While your hubby's sitting around not talking to you, you could calmly listen to a meditation CD (headset on), or do a few simple yoga stretches (can you take a class?).
Take care,
Kathy
Hi Carrie,
Adding on a belated welcome!
So much good info was given to you for your next steps, I have nothing to add in that area. Just if you can start to make a short list of the important points brought up by the others so you can follow your next steps toward answers.
As for hubby. Sounds that he is being selfish. He just wants you to go about your days as you always have and not acknowledge anything out loud that's going on.
If it were him going through this would you listen to him?
Remind him of this in some manner.
I'll throw myself into the mislabeled pit too. When I presented to my doc for the 1st time, she said, it's "classic stress." I'm not saying you don't have anxiety, even you mention how going off and symptoms returning. It's ok to have to take meds for this.
But, it's also important to recognize that symptoms like this cause anxst. So you could be experiencing a double whammy. Take what your body needs in that regard but definitely proceed with the next steps provided above (all reports/results, history, symptom list, etc.) and a great tip provided, leave the MS word out of convos w/hubby and docs. Let them sort it all out.
-Shell
Adding on a belated welcome!
So much good info was given to you for your next steps, I have nothing to add in that area. Just if you can start to make a short list of the important points brought up by the others so you can follow your next steps toward answers.
As for hubby. Sounds that he is being selfish. He just wants you to go about your days as you always have and not acknowledge anything out loud that's going on.
If it were him going through this would you listen to him?
Remind him of this in some manner.
I'll throw myself into the mislabeled pit too. When I presented to my doc for the 1st time, she said, it's "classic stress." I'm not saying you don't have anxiety, even you mention how going off and symptoms returning. It's ok to have to take meds for this.
But, it's also important to recognize that symptoms like this cause anxst. So you could be experiencing a double whammy. Take what your body needs in that regard but definitely proceed with the next steps provided above (all reports/results, history, symptom list, etc.) and a great tip provided, leave the MS word out of convos w/hubby and docs. Let them sort it all out.
-Shell
Oh Carrie girl, sorry to see you back here with no real dx. Sounds like you are getting a lot of good advice. My best advice is to follow your instincts. YOU know if there is something wrong with your body.
My main regret is that I didn't keep pushing my dr's earlier for dx...in my 20's and 30's. And honestly if I hadn't finally said I am not letting this go again, I wouldn't have a dx now in my 40's.
Many of your sx sound like MS BUT you know that MS mimics so many things, so keep pushing. As far as your husband goes, he is on his own journey with this just like you are. Yes, ideally he should be supporting you but sometimes, especially in lifechaning situations, we don't always act the way we should.
Give him time to absorb this. I don't think my husband really thought I had anything serious until he heard it from the dr, my friends were the same way. Just think of them as scared children who don't know how to act/react so they lead with fear which usually comes out as anger.
Whatever you are currently going through will change you, but it is you who will determine if that change is for the better or the worst. Hang there and keep fighting and be so very kind to yourself right now.
Hugs and best wishes, Julie
My main regret is that I didn't keep pushing my dr's earlier for dx...in my 20's and 30's. And honestly if I hadn't finally said I am not letting this go again, I wouldn't have a dx now in my 40's.
Many of your sx sound like MS BUT you know that MS mimics so many things, so keep pushing. As far as your husband goes, he is on his own journey with this just like you are. Yes, ideally he should be supporting you but sometimes, especially in lifechaning situations, we don't always act the way we should.
Give him time to absorb this. I don't think my husband really thought I had anything serious until he heard it from the dr, my friends were the same way. Just think of them as scared children who don't know how to act/react so they lead with fear which usually comes out as anger.
Whatever you are currently going through will change you, but it is you who will determine if that change is for the better or the worst. Hang there and keep fighting and be so very kind to yourself right now.
Hugs and best wishes, Julie
Hi Carrie, it looks like you have the medical advice well in hand here (thanks everyone !) - I would find an MS specialist to see and run all of this past that doc. A lesion load of 20+ has to have an explanation. Age isn't one ofthose.
Now for your husband - how childish of him to not be talking to you. Want us to come around and make him go to timeout until he can be supportive?
We all need someone to help advocate for our care - and I hope you can get that message through to him. Perhaps you need to stop labeling this mystery ailment as MS, but explain to him that something is wrong and you need answers so you can be treated.
I hope this makes sense. Is the neuro you see in November an MS specialist? Keep us posted, ok
Lulu
Now for your husband - how childish of him to not be talking to you. Want us to come around and make him go to timeout until he can be supportive?
We all need someone to help advocate for our care - and I hope you can get that message through to him. Perhaps you need to stop labeling this mystery ailment as MS, but explain to him that something is wrong and you need answers so you can be treated.
I hope this makes sense. Is the neuro you see in November an MS specialist? Keep us posted, ok
Lulu
Where did they do your MRI? UCSF? The reason I ask is that my first MRI was done at an outpatient imaging center. When the CU Neurology fellow looked at it his comment was: "OK. I see one interesting lesions, but this study is pretty useless. Way too muck movement artifact." I'm going for another MRI Monday evening. And it starts with 10 mg of Valium 1 hour before and 10 mg 1/2 before. He wants my head very still for the 3 T brain and c-spine. There are a lot of variables. I have no idea what images and labs the UCSF docs had to look at. I will say that if you continue to have symptoms in other parts of your body over a longer period of time, it may be time to see UCSF again. One of the big things about MS is "dissemination in time."
As you develop a history of signs (reports from all your doctors, MRIs, Labs) and symptoms (the patients symptom timeline), the doctors have more data to work with. I can see why some if these docs look like they are hedging. They get a bunch of data thrown at them (a lot of it is subjective) one time and they never had the chance to examine us when we were healthy. Like many doctors they are trying to get an idea that we are sick and our health is declining. That takes some time.
After reading a bunch of posts on here, I think the people that had a good relationship and an established health care history with their PCP have an advantage. When that PCP steps up and comes to bat for the patient and the PCP and patient are the advocates, they seem to shorten the diagnostic process. In general, I think Neurologist don't take what patients say as gospel. They will take your PCPs word that your reflexes last year were 3/3 and on your current exam they are 5+/3. Then the neurologist can see a decline.
Bob
As you develop a history of signs (reports from all your doctors, MRIs, Labs) and symptoms (the patients symptom timeline), the doctors have more data to work with. I can see why some if these docs look like they are hedging. They get a bunch of data thrown at them (a lot of it is subjective) one time and they never had the chance to examine us when we were healthy. Like many doctors they are trying to get an idea that we are sick and our health is declining. That takes some time.
After reading a bunch of posts on here, I think the people that had a good relationship and an established health care history with their PCP have an advantage. When that PCP steps up and comes to bat for the patient and the PCP and patient are the advocates, they seem to shorten the diagnostic process. In general, I think Neurologist don't take what patients say as gospel. They will take your PCPs word that your reflexes last year were 3/3 and on your current exam they are 5+/3. Then the neurologist can see a decline.
Bob
Ha ha.
Bob: I was seen at UCSF at the MS department. My first two neouro's were did not specialize in MS but then my GI doc of all people, sent me to UCSF. All testing was done there...... Do you think I should go somewhere else, or was I at the best place?
Oh yeah, another symptom that I forgot to add:
- Numbness feeling in on the bottom arch area of my left foot...comes and goes
- Strange swirling tingling sensation on my scalp...moves around....
I'm writing all these down and will come back to this string of postings with all my symptoms in it later.
Bob: I was seen at UCSF at the MS department. My first two neouro's were did not specialize in MS but then my GI doc of all people, sent me to UCSF. All testing was done there...... Do you think I should go somewhere else, or was I at the best place?
Oh yeah, another symptom that I forgot to add:
- Numbness feeling in on the bottom arch area of my left foot...comes and goes
- Strange swirling tingling sensation on my scalp...moves around....
I'm writing all these down and will come back to this string of postings with all my symptoms in it later.
And do you know what they call the one who graduates from med school dead last?
What?
Doctor
What?
Doctor
Exposure to Lyme's at 10 would have presented within a few months, MAX. They can do Lyme's titers, but I have a tendency to think that if the radiologist felt your lesion load was "inconsistent with your age and , though not typical for MS, may represent an atypical presentation." (Yes, I changed the words and punctuation a bit to get the point across. If the symptoms, sings and MRI support MS....
There is a running joke in this forum based on a principle of Sir William of Occam in the 14th century "entities must not be multiplied beyond necessity." The modern interpretation is: "When you hear hoof beats, think horses, not zebras."
There is a real good MS clinic and some very sharp MS docs at UCSF. If I were you I'd ask for a referral.
Bob
There is a running joke in this forum based on a principle of Sir William of Occam in the 14th century "entities must not be multiplied beyond necessity." The modern interpretation is: "When you hear hoof beats, think horses, not zebras."
There is a real good MS clinic and some very sharp MS docs at UCSF. If I were you I'd ask for a referral.
Bob
HI Mark:
I soooooo agree with you about the female thing and anxiety. I make my husband come with me to my appointments at times because it does make a huge difference. Only problem is my husband tends to side with them on the anxiety thing at times because, well...I have a lot of anxiety about my health since becoming sick 1.5 years ago.
I am off the Prozac...have been since 7/31/10. It caused me to have HORRIBLE acid reflux which is just now at the final stages of clearing up and I'm finally able to eat more like a normal person. I had a bad experience with a pill called Reglan when I was having gallbladder issues....at first they told me I had gastroparesis without ever checking my gallbladder. I thought for FIVE MONTHS that I had gastroparesis because they never tested my gallbladder. That is when my life went to H _ _ _. That's a horrible diagnosis and I wouldn't wish it on anyone. Anyone the doc puts me on 40 mg of Reglan PER DAY which is huge. It make my stomach work but little did I know it can cause Tardive Dyskinesia.
When all my tingling and symptoms started, I thought I had Tardive Dyksinesia! I was really freaking out. I'm telling you, this last 1.5 years had been HORRIBLE for me. I will not touch ANY DRUG that can cause Tardive Dykeninsia (can't spell it now thankfully because when I thought I had it, I was googling it 30 times a day). Anyway, yes, I'm very cautious as to what I'm taking and putting into my body.
Your wife sounds like a lucky woman to have a supportive husband by her side when she visits the doc!
So, where are the docs from the top half of the class????
I soooooo agree with you about the female thing and anxiety. I make my husband come with me to my appointments at times because it does make a huge difference. Only problem is my husband tends to side with them on the anxiety thing at times because, well...I have a lot of anxiety about my health since becoming sick 1.5 years ago.
I am off the Prozac...have been since 7/31/10. It caused me to have HORRIBLE acid reflux which is just now at the final stages of clearing up and I'm finally able to eat more like a normal person. I had a bad experience with a pill called Reglan when I was having gallbladder issues....at first they told me I had gastroparesis without ever checking my gallbladder. I thought for FIVE MONTHS that I had gastroparesis because they never tested my gallbladder. That is when my life went to H _ _ _. That's a horrible diagnosis and I wouldn't wish it on anyone. Anyone the doc puts me on 40 mg of Reglan PER DAY which is huge. It make my stomach work but little did I know it can cause Tardive Dyskinesia.
When all my tingling and symptoms started, I thought I had Tardive Dyksinesia! I was really freaking out. I'm telling you, this last 1.5 years had been HORRIBLE for me. I will not touch ANY DRUG that can cause Tardive Dykeninsia (can't spell it now thankfully because when I thought I had it, I was googling it 30 times a day). Anyway, yes, I'm very cautious as to what I'm taking and putting into my body.
Your wife sounds like a lucky woman to have a supportive husband by her side when she visits the doc!
So, where are the docs from the top half of the class????
Hi Carrie,
Sorry you are going through this, I think your drs. are making you worse, not better.
I've said it before and I'll say it again - doctors, male and female, do not respect women!
The first answer out of their mouth when they see a woman's broken leg with a bone sticking out is "anxiety". I've been through this with my wife, a horrible abcessed tooth was anxiety, a inflamed gall bladder, anxiety. She is not shy and not dull, but the only solution that works seems to be if I'm present, I don't have to say anything other than hello, but she'll confirm that they don't say anxiety after 30 seconds. A century ago drs. would say "female problems" or the vapors. If they say anxiety I will tell my w lets leave, this dr. is an idiot.
Drs. are also prone to make diagnoses w/o doing a full exam regardless of gender.
I think you need to never again see any dr who says anxiety, be very careful with Prozac and all the anti-depressants, research them until your eyeballs hurt, discuss what you find with your brightest friends. If you want marital problems Prozac, Paxil and their like can cause loss of libido, weight gain, and turn you into a lump.
Stopping many of the anti-d's is very difficult (Effexor and Paxil among the worst - absolutely ******** terrible is the closest I'll come on a board like this, but most aren't easy to stop), don't let anyone other than a psychiatrist who doles out pills left, right and center Rx one of them. Don't start w/o asking a lot of questions, and if you are still taking Prozac find a specialist, s/he will be a lot less expensive than a divorce, get a lot of guidance and follow up when you want to stop.
Don't forget, half of all dr.s graduated in the bottom half of their class.
Mark
Sorry you are going through this, I think your drs. are making you worse, not better.
I've said it before and I'll say it again - doctors, male and female, do not respect women!
The first answer out of their mouth when they see a woman's broken leg with a bone sticking out is "anxiety". I've been through this with my wife, a horrible abcessed tooth was anxiety, a inflamed gall bladder, anxiety. She is not shy and not dull, but the only solution that works seems to be if I'm present, I don't have to say anything other than hello, but she'll confirm that they don't say anxiety after 30 seconds. A century ago drs. would say "female problems" or the vapors. If they say anxiety I will tell my w lets leave, this dr. is an idiot.
Drs. are also prone to make diagnoses w/o doing a full exam regardless of gender.
I think you need to never again see any dr who says anxiety, be very careful with Prozac and all the anti-depressants, research them until your eyeballs hurt, discuss what you find with your brightest friends. If you want marital problems Prozac, Paxil and their like can cause loss of libido, weight gain, and turn you into a lump.
Stopping many of the anti-d's is very difficult (Effexor and Paxil among the worst - absolutely ******** terrible is the closest I'll come on a board like this, but most aren't easy to stop), don't let anyone other than a psychiatrist who doles out pills left, right and center Rx one of them. Don't start w/o asking a lot of questions, and if you are still taking Prozac find a specialist, s/he will be a lot less expensive than a divorce, get a lot of guidance and follow up when you want to stop.
Don't forget, half of all dr.s graduated in the bottom half of their class.
Mark
H Everyone:
Thanks for your responses. I just today requested copies of all my MRI's, bloodwork, etc. Bob, The lesions were not located in the area that they normally see lesions with MS. The summary said something like "patient has 20 or more lesions which is more than expected for age. Lesions are not typical for MS however, this could be an atypical presentation". It said more, but that is all I remember off the top of my head. They tested me for Lyme when they did the LP, but I believe it was all negative.
I sometimes wonder about the Lyme though because when I was 10 or 12, I went on a backpacking trip with a friend and her family and I had a tick buried in my belly button and didn't notice it until it started really hurting. Could have been there for days.... I'm thinking if researching the Lyme thing a little more thoroughly.
To Summer: I go through my day very normally. The only noticable time I have difficultly is when getting up from the couch after sitting for a while or out of bed in the morning....my feet hurt and they feel stiff or something. Not sure how to explain it. Could this just be my age?????? I will be 49 in March. After walking for just a few steps though, I'm back to normal.
Anyway, thanks again. I have another appt with one of my older neouros on 11/8/10 to show my MRI and paperwork. This is one of the docs that said it's all anxiety....should I go to someone completely new???????
Thanks for your responses. I just today requested copies of all my MRI's, bloodwork, etc. Bob, The lesions were not located in the area that they normally see lesions with MS. The summary said something like "patient has 20 or more lesions which is more than expected for age. Lesions are not typical for MS however, this could be an atypical presentation". It said more, but that is all I remember off the top of my head. They tested me for Lyme when they did the LP, but I believe it was all negative.
I sometimes wonder about the Lyme though because when I was 10 or 12, I went on a backpacking trip with a friend and her family and I had a tick buried in my belly button and didn't notice it until it started really hurting. Could have been there for days.... I'm thinking if researching the Lyme thing a little more thoroughly.
To Summer: I go through my day very normally. The only noticable time I have difficultly is when getting up from the couch after sitting for a while or out of bed in the morning....my feet hurt and they feel stiff or something. Not sure how to explain it. Could this just be my age?????? I will be 49 in March. After walking for just a few steps though, I'm back to normal.
Anyway, thanks again. I have another appt with one of my older neouros on 11/8/10 to show my MRI and paperwork. This is one of the docs that said it's all anxiety....should I go to someone completely new???????
About 90% of Clinical Diagnosed MS Patients Test Postive for O Bands if the lab does the test 100% correctly. As Quix has brought up on more than on occasion, only 23% of the tests are performed correctly. The Physical evidence is MSI detects 20 lessions, but what does the radiologist's report say. Where were the images located? What did the lesions look like? Were they just T2 or GAD enhancing? There has to be more than just 20 lesions. I also understand your desire for a thoracic MRI. But consider that the symptoms related to your face and eye are much higher than you thoracic area. Have any of the other mimics been rules out? Lyme's, etc.
Just a few thoughts.
Bob
Just a few thoughts.
Bob
Hi Carrie,
No one can DX anything here, but I do think your doc needs to let you know what he/she thinks about the lesions. Have you seen the doc since all your latest test results? I would get another opinion if there is no answer from him/her about your lesions and your symptoms.
I have had very similar symptoms as you,and I don't think anxiety has a part in it. You know your body and know there is something wrong. I would trust your instincts and hopefully find a doc that wants to help you.
Michelle
No one can DX anything here, but I do think your doc needs to let you know what he/she thinks about the lesions. Have you seen the doc since all your latest test results? I would get another opinion if there is no answer from him/her about your lesions and your symptoms.
I have had very similar symptoms as you,and I don't think anxiety has a part in it. You know your body and know there is something wrong. I would trust your instincts and hopefully find a doc that wants to help you.
Michelle
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