Aa
Timeline - please give me your thoughts
Here is my timeline sort of. Quix - I'd love if you could give me your input. I know you're in high demand so if you can't get to it that's Ok.
Summer 1998 (25 years old)
- myoclonus hit out of the blue. Started one night while lying in bed, progressed to very violent jerks that made me fall a couple of times. Was sent from clinic to ER. Neuro mentioned MS. All tests negative (brain MRI on 1.5 Tesla, can't remember what else they did)
- fatigue
- hesitancy going p
- eyes would get stuck staring a lot
Fall 1998
- sent to Mayo Clinic, where spinal myoclonus was diagnosed "with possible autoimmune etiology" I questioned whether it could be caused by Prozac which I had taken for a couple months prior to onset. But was told probably not since I stopped taking it and was still jerking violently 6 weeks later. MRI of cerv. spine and thor spine normal. Evoked Potentials and LP normal. Had 5-day IV of SoluMedrol.
1999 got married and got pregnant, in that order. Felt great (for being pregnant) and myoclonus subsided.
2000 had baby, got pregnant again (my friend's great birth control idea didn't quite work and we both got pregnant, had boys 3 days apart!) Still feeling good.
2002 myoclonus came back as a weird, painful head jerk to the back and left that made me go "hmph" I think I may have had repeat MRI's on the 1.5 Tesla which were again normal. Fatigue was back, too. Left hand would twitch and left leg. Was told it was tourrette's syndrome, not myoclonus. Weakness in right leg, would occasionally "give out" on me.
2003 - Aug. 2006 - Don't remember much. Was able to work more than I had in years, although still wasn't capable of working full time. Didn't go to the doctor for anything.
Aug. 2006 - Fatigue hit that kept me in bed all day, chest pain, lower back pain if I stood for any length of time, hard to even shower and get ready. Had to sit down when drying my hair. Legs felt heavy and weak. Temp would fluctuate between 97 and 99.5. Had echo to check my heart and it was fine. Told to take an antidepressant. Felt worse on it so quit taking it, wasn't depressed. Fatigue was bad for a couple months then got a little better.
February 2007 - Went to doctor and told them to give me something for the fatigue. Also had lymph node swell up (which is still swollen) and had ct scans to check nodes which were normal. Cancer doc had me tested for lyme and lupus (both negative), temp would sometimes go up to 100.
- Felt stiff a lot, started kind of waddling around
- right leg weakness back
- very chilled at bed time
- night sweats
- eyes did a kind of blinky thing when I'd go to write and it took a second to focus
Summer 2007 - felt pretty good, not as much energy as summer before but was feeling good and not concerned with my health at all.
Sept. 2007 - it hit again:
- fatigue
- night sweats to where I was putting deodorant on my back (I know that's gross)
- tingling in arms, face and feet
- a couple myoclonic jerks
- trembling feeling on the inside
- twitch in my left leg at night mostly
- left eye feels "fuzzy," staring alot (eye exam normal)
- waddling more often, like pretty much all the time
- feel weak almost constantly
- hard work puts me out of commission for a few days
- feel stiff
- chest pain/low back pain after standing awhile
I know this is a lot. Thanks to anyone who took the time to read it. I should say that my family doctor thinks it's depression or anxiety, but she has also wanted to send me to an infectious disease doctor so I don't know what she thinks.
I was in denial of any neuro problems when things started up again this year because in my heart I was hoping it would be something simple to diagnose, and I didn't want to believe it was neurological. So I think I could have misled my doctor inadvertantly because I didn't want to tell her anything that I could be "making up". I do know that it's not from depression. The fatigue has hit me when I had big plans for life and it stopped me cold.
I'm very cheap and can't stand spending money on medical testing, but I am going to a neuro next week. The tingling on my face has increased in the last week and is almost constant. I may be just paying more attention to it. I also feel like my balance is a little off but that could be from me overthinking things.
Any input from anyone?
Summer 1998 (25 years old)
- myoclonus hit out of the blue. Started one night while lying in bed, progressed to very violent jerks that made me fall a couple of times. Was sent from clinic to ER. Neuro mentioned MS. All tests negative (brain MRI on 1.5 Tesla, can't remember what else they did)
- fatigue
- hesitancy going p
- eyes would get stuck staring a lot
Fall 1998
- sent to Mayo Clinic, where spinal myoclonus was diagnosed "with possible autoimmune etiology" I questioned whether it could be caused by Prozac which I had taken for a couple months prior to onset. But was told probably not since I stopped taking it and was still jerking violently 6 weeks later. MRI of cerv. spine and thor spine normal. Evoked Potentials and LP normal. Had 5-day IV of SoluMedrol.
1999 got married and got pregnant, in that order. Felt great (for being pregnant) and myoclonus subsided.
2000 had baby, got pregnant again (my friend's great birth control idea didn't quite work and we both got pregnant, had boys 3 days apart!) Still feeling good.
2002 myoclonus came back as a weird, painful head jerk to the back and left that made me go "hmph" I think I may have had repeat MRI's on the 1.5 Tesla which were again normal. Fatigue was back, too. Left hand would twitch and left leg. Was told it was tourrette's syndrome, not myoclonus. Weakness in right leg, would occasionally "give out" on me.
2003 - Aug. 2006 - Don't remember much. Was able to work more than I had in years, although still wasn't capable of working full time. Didn't go to the doctor for anything.
Aug. 2006 - Fatigue hit that kept me in bed all day, chest pain, lower back pain if I stood for any length of time, hard to even shower and get ready. Had to sit down when drying my hair. Legs felt heavy and weak. Temp would fluctuate between 97 and 99.5. Had echo to check my heart and it was fine. Told to take an antidepressant. Felt worse on it so quit taking it, wasn't depressed. Fatigue was bad for a couple months then got a little better.
February 2007 - Went to doctor and told them to give me something for the fatigue. Also had lymph node swell up (which is still swollen) and had ct scans to check nodes which were normal. Cancer doc had me tested for lyme and lupus (both negative), temp would sometimes go up to 100.
- Felt stiff a lot, started kind of waddling around
- right leg weakness back
- very chilled at bed time
- night sweats
- eyes did a kind of blinky thing when I'd go to write and it took a second to focus
Summer 2007 - felt pretty good, not as much energy as summer before but was feeling good and not concerned with my health at all.
Sept. 2007 - it hit again:
- fatigue
- night sweats to where I was putting deodorant on my back (I know that's gross)
- tingling in arms, face and feet
- a couple myoclonic jerks
- trembling feeling on the inside
- twitch in my left leg at night mostly
- left eye feels "fuzzy," staring alot (eye exam normal)
- waddling more often, like pretty much all the time
- feel weak almost constantly
- hard work puts me out of commission for a few days
- feel stiff
- chest pain/low back pain after standing awhile
I know this is a lot. Thanks to anyone who took the time to read it. I should say that my family doctor thinks it's depression or anxiety, but she has also wanted to send me to an infectious disease doctor so I don't know what she thinks.
I was in denial of any neuro problems when things started up again this year because in my heart I was hoping it would be something simple to diagnose, and I didn't want to believe it was neurological. So I think I could have misled my doctor inadvertantly because I didn't want to tell her anything that I could be "making up". I do know that it's not from depression. The fatigue has hit me when I had big plans for life and it stopped me cold.
I'm very cheap and can't stand spending money on medical testing, but I am going to a neuro next week. The tingling on my face has increased in the last week and is almost constant. I may be just paying more attention to it. I also feel like my balance is a little off but that could be from me overthinking things.
Any input from anyone?
Thank you SOOOOO much. The way you described the back thing is exactly how I feel - every Sunday when I have to stand up singing after about 1/2 an hour I will bend over to stretch my back during practice. Then during the service since I can't bend over in front of hundreds of people I'll lean a little to the sides to try to get some relief.
Tonight I went to watch a Volleyball game and my back was fine sitting there but my stomach muscles felt like they wanted to cramp up and I'd have to lean back to stretch them out. My foot cramps up really easy, too.
I guess what I was calling twitches were jerks. I do get the little under your skin twitches but I don't know that I get them any more than the average healthy person.
I will work on my timeline and try to make things as quick a read as possible. Your advice is priceless. You deserve some sort of award. Maybe we can start an online angel award or something. You've given me courage. I'll let you know how it goes. I want to cry I'm so grateful for you taking the time to do this for me.
Michelle
Tonight I went to watch a Volleyball game and my back was fine sitting there but my stomach muscles felt like they wanted to cramp up and I'd have to lean back to stretch them out. My foot cramps up really easy, too.
I guess what I was calling twitches were jerks. I do get the little under your skin twitches but I don't know that I get them any more than the average healthy person.
I will work on my timeline and try to make things as quick a read as possible. Your advice is priceless. You deserve some sort of award. Maybe we can start an online angel award or something. You've given me courage. I'll let you know how it goes. I want to cry I'm so grateful for you taking the time to do this for me.
Michelle
Well, that answered a lot of questions. The weakness sounds like easy fatiguability. The strength is there initially, but the muscle fades with effort. The doc needs to know that that is how it seems. It makes me wonder about something called 'Myasthenia graivis," where the muscles of the body fatigue with use. (The classic typical sign is droopy eyelids as the day wears on)
It sounds like when you make the effort to focus closely on something, your eyes jerk a few times. I gather this is your eye movements jerk, as opposed to the eyekids jerking or twitching.
The back pain sounds like the mucsles of the back "tighten up" (I am picturing spasticity, but I can't be sure). The lower back muscles and on down to the hip are at their shortest length when you are standing. If the tone in your back muscles is higher then they will keep contracting, and get "tight and sore." When you sit down this stretches the muscles some and the possible spasm is relieved. Does this make sense? After standing a long time do you find you want to bend at the waist front and to the sides?
If the pain in your back was from disc disease in the spine, then the worst pressure and pain is almost always while sitting. Thus, it sounds to me, online, lol, like your lower back is cramping up.
When a muscle contraction actually makes the limb move it is generally referred to as a jerk, as in a myoclonic jerk, which is what you seem to be describing. Twitiches are those little muscle fiber contractions that you can feel and sometimes see beneath the skin.
The localized sweating sounds like a local autonomic nerve dysfunction.
You really, really, really need to get your EBV (Epstein-Barr Virus) titers checked. Several members of the forum have chronic/reactivating EBV and it can cause unbelievable fatigue. Also, people who run chronically high EBV antibody titers have about 30 times greater risk of developing multiple sclerosis. EBV has the best evidence for being one of the triggers of MS. Typically, it's the people who have had the classic presentation of mononucleosis later in life - teens to adult. Most people get the EBV infection as infants or children and it's a barely noticeable febrile infection. When you had the strp-like virus at 22 did they check you for mono?
Also make sure you tell the doctor about the muscle spasms, where they occur and how long they last.
So, I hope these answers and explanations help you describe what you have been going through to the Dr. tomorrow. I certainly can't put my finger on the diagnosis. But, you're in the right place on this forum. Make sure you make the corrections and additions to your timeline. Give it to the front desk to be attached to your chart when you check in and hope the doc reads it. Look it over to make sure it "skim reads" well. Keep a copy for you to refer to in case your mind goes blank when he asks you questions. Mine always does.
I'll be checking the forum all evening, if I raised more questions.
Good luck - Quix
It sounds like when you make the effort to focus closely on something, your eyes jerk a few times. I gather this is your eye movements jerk, as opposed to the eyekids jerking or twitching.
The back pain sounds like the mucsles of the back "tighten up" (I am picturing spasticity, but I can't be sure). The lower back muscles and on down to the hip are at their shortest length when you are standing. If the tone in your back muscles is higher then they will keep contracting, and get "tight and sore." When you sit down this stretches the muscles some and the possible spasm is relieved. Does this make sense? After standing a long time do you find you want to bend at the waist front and to the sides?
If the pain in your back was from disc disease in the spine, then the worst pressure and pain is almost always while sitting. Thus, it sounds to me, online, lol, like your lower back is cramping up.
When a muscle contraction actually makes the limb move it is generally referred to as a jerk, as in a myoclonic jerk, which is what you seem to be describing. Twitiches are those little muscle fiber contractions that you can feel and sometimes see beneath the skin.
The localized sweating sounds like a local autonomic nerve dysfunction.
You really, really, really need to get your EBV (Epstein-Barr Virus) titers checked. Several members of the forum have chronic/reactivating EBV and it can cause unbelievable fatigue. Also, people who run chronically high EBV antibody titers have about 30 times greater risk of developing multiple sclerosis. EBV has the best evidence for being one of the triggers of MS. Typically, it's the people who have had the classic presentation of mononucleosis later in life - teens to adult. Most people get the EBV infection as infants or children and it's a barely noticeable febrile infection. When you had the strp-like virus at 22 did they check you for mono?
Also make sure you tell the doctor about the muscle spasms, where they occur and how long they last.
So, I hope these answers and explanations help you describe what you have been going through to the Dr. tomorrow. I certainly can't put my finger on the diagnosis. But, you're in the right place on this forum. Make sure you make the corrections and additions to your timeline. Give it to the front desk to be attached to your chart when you check in and hope the doc reads it. Look it over to make sure it "skim reads" well. Keep a copy for you to refer to in case your mind goes blank when he asks you questions. Mine always does.
I'll be checking the forum all evening, if I raised more questions.
Good luck - Quix
You are wonderful - you had a very good excuse for the delay with all that has been going on in your family. And that you would spend so much time helping us all here, I just can't thank you enough and I know everyone else feels the same. I'll do my best to answer your questions.
1. Weakness of right leg: It has happened more recently as well. It happens while walking and it was more like a tired feeling would wash over it. I think the only thing it did was slow me down and make me limp slightly. It was like I had run a marathon on that leg only. But it would go away fairly quickly, like after I rested. I would also have that tired feeling wash over my whole body in a wave and I'd have to rest a second.
2. No trouble initiating movement that I know of, other than getting my rear out of bed in the morning:)
3. Stiffness - this is kind of a newer thing. It happens when I've done a lot of activity during the day, or a somewhat full days work, but sometimes I'll wake up that way in the morning and it takes a long time to get over it. I guess it's mostly in my legs up through my back. I'm not sore at all but it makes me move around like I worked out really hard the day before. My husband has asked me before if I'm sore. My toes don't brush the ground and I can walk on my toes and on my heels. When I'm feeling that way I also feel exhausted and I walk with kind of a waddle, I guess rocking back and forth more. If I think about how I'm walking I can make myself walk more normal but it takes some effort.
4. Back pain - I only really notice it when I've been on my feet for a couple hours, especially if I've just been standing in one place mostly (like when I sing). It gets really achy and I have to sit to relieve it.
5. Eye things - the fuzziness was just a feeling in my left eye. I could see perfectly fine, and there was no discomfort like it was dry or anything. It just felt like there was a film over it or something, but my eye exam was fine. My eyes get stuck staring a lot, like while I'm driving, and that's usually when my twitching has been at it's worst lately. The other thing that I've noticed with my eyes is when I go to focus on something to read or write they will do a jumpy or twitchy thing that makes it take a second before I can start writing. I don't know how to describe it. It happened for the first time about a year or so ago and I've only noticed it once in the last month when I went to read the thermostat.
6. Twitching - it does make my leg move. My new twitch is in my right arm and happens while I'm driving with that arm on the arm rest. It jerks in towards my body.
7. Night sweats - they came on again in September and coincided with the fatigue and general yucky feeling. They always occur on my chest and upper back, nowhere else. If I catch them in the middle of the night I'll have a little pool of sweat on my chest. I haven't had any for the last week or so, but for about a month it happened nearly every night.
Just a little past history - I had mono at age 13 and again when I was 19. Then I had a strep-like virus (wasn't strep) at age 22 that gave me a fever of 105.2 and I lost 15 pounds in 2 weeks. Don't know if any of that is relevant but thought I should mention it.
A couple other little things - last winter I was getting muscle cramps in my stomach and today while I was at the library I got a painful spasm (I guess) right under my rib cage.
I do have insurance and we've met our deductible for the year so that's the main reason I'm going to the neuro now.
Hope I answered your questions. I cannot thank you enough for your help. If I could return the favor in some way I would! Hope your parents are doing well, and I hope you are feeling well, too.
Michelle
1. Weakness of right leg: It has happened more recently as well. It happens while walking and it was more like a tired feeling would wash over it. I think the only thing it did was slow me down and make me limp slightly. It was like I had run a marathon on that leg only. But it would go away fairly quickly, like after I rested. I would also have that tired feeling wash over my whole body in a wave and I'd have to rest a second.
2. No trouble initiating movement that I know of, other than getting my rear out of bed in the morning:)
3. Stiffness - this is kind of a newer thing. It happens when I've done a lot of activity during the day, or a somewhat full days work, but sometimes I'll wake up that way in the morning and it takes a long time to get over it. I guess it's mostly in my legs up through my back. I'm not sore at all but it makes me move around like I worked out really hard the day before. My husband has asked me before if I'm sore. My toes don't brush the ground and I can walk on my toes and on my heels. When I'm feeling that way I also feel exhausted and I walk with kind of a waddle, I guess rocking back and forth more. If I think about how I'm walking I can make myself walk more normal but it takes some effort.
4. Back pain - I only really notice it when I've been on my feet for a couple hours, especially if I've just been standing in one place mostly (like when I sing). It gets really achy and I have to sit to relieve it.
5. Eye things - the fuzziness was just a feeling in my left eye. I could see perfectly fine, and there was no discomfort like it was dry or anything. It just felt like there was a film over it or something, but my eye exam was fine. My eyes get stuck staring a lot, like while I'm driving, and that's usually when my twitching has been at it's worst lately. The other thing that I've noticed with my eyes is when I go to focus on something to read or write they will do a jumpy or twitchy thing that makes it take a second before I can start writing. I don't know how to describe it. It happened for the first time about a year or so ago and I've only noticed it once in the last month when I went to read the thermostat.
6. Twitching - it does make my leg move. My new twitch is in my right arm and happens while I'm driving with that arm on the arm rest. It jerks in towards my body.
7. Night sweats - they came on again in September and coincided with the fatigue and general yucky feeling. They always occur on my chest and upper back, nowhere else. If I catch them in the middle of the night I'll have a little pool of sweat on my chest. I haven't had any for the last week or so, but for about a month it happened nearly every night.
Just a little past history - I had mono at age 13 and again when I was 19. Then I had a strep-like virus (wasn't strep) at age 22 that gave me a fever of 105.2 and I lost 15 pounds in 2 weeks. Don't know if any of that is relevant but thought I should mention it.
A couple other little things - last winter I was getting muscle cramps in my stomach and today while I was at the library I got a painful spasm (I guess) right under my rib cage.
I do have insurance and we've met our deductible for the year so that's the main reason I'm going to the neuro now.
Hope I answered your questions. I cannot thank you enough for your help. If I could return the favor in some way I would! Hope your parents are doing well, and I hope you are feeling well, too.
Michelle
Hi, I've been very tardy and have no good reason. I have increased family commitments right now and for the next month or so, Just couldn't muster the wherewithall to look at new data. But I hear you have an appointment tomorrow so I was going to try to give you a few thoughts. I'm going to ask a ton of questions. The answers will help me , but they will also help you in describing the problems to the doctor tomorrow.
Myoclonus can be a part of many neurological diseases or it can stand along. It is technically considered a movement disorder. But, it is definitely seen along with things like MS, Parkinsons, and it can stand alone as a problem. There is a wonderful site on movement disorders called "We Move":
http://www.wemove.org/
I don't know what to make of the fatigue, the subsequent head jerking and diagnosis of Tourette's. It's possible, but Tourette's is not known for systemic symptoms like severe fatigue.
In 2002 you had weakness of the right leg. How did this manifest itself? Did it fatigue with use or cause you to have difficulty with stairs or with lifting it? How long did that weakness last.
Have you ever had trouble "initiating" movement - dificulty getting moving with the first movements, but did okay once you were in motion?
Where are you stiff?Limbs, torso, neck? Does the stiffness relieve with motion or are you always fight thing the stiffness? When you walk do your toes trip on the ground. As you walk are you swinging your legs out and around to clear the ground? Can you walk on your toes? On your heels?
I'm wondering if the stiffness is just that or if it is spasticity. It will be interesting to see what your reflexes are like at the knees and ankles.
Is the back pain also a tightness that hurts if you flex your hip (bring your knee up)? Does it hurt worse after standing for a long time than it does after sitting for a long time. Is it stiff in the morning when you first get up? If the answer is yes to all of these I think you might be deeling with spasticity.
So now, you have stiffness, severe ongoing fatigue, twitches (little muscle jerks that don't move the leg?) still some jerking, some visual stuff (What do you mean by eye "fuzzy"? Does the eye feel dry and fuzzy or is the vision fuzzy?)
Let me say that what you are describing is NOT depression nor is it anxiety, though it could cause both of those. Be firm with the doctor that this is not depression. You wnat more than anything else to be the accomplished person you always were.
When you describe the night sweats, you specified your back. Were there places where you would drench in sweat and not others?? Focal disruption of sweating (too much or too little) can be seen in MS, and in other forms of autonomic neuropathy.
With the lymph node swelling an Infectious Disease evaluation would not be a bad idea at all. Even without that I would recommend retesting for Lyme (though that does not explain the movement problems, jerks and stiffness) and you should definitely have titers run for EBV the mono virus!!
You really need a thorough Neurological exam, a new MRI of your brain and spine done with and without contrast. You have several feature which could fit with MS, but also several that place you more into a movement disorder category. I understand how you don't want to spend money on medical tests (do you have insurance?), but, with the way you are going downhill, I believe you really need to get to the bottom of the problem. The severe fatigue fits more with MS, CFIDS, infection.
I have asked a ton of questions and you don't have much time left tonight. But if you could answer them I will respond tonight. I hope you see this. Quix
Myoclonus can be a part of many neurological diseases or it can stand along. It is technically considered a movement disorder. But, it is definitely seen along with things like MS, Parkinsons, and it can stand alone as a problem. There is a wonderful site on movement disorders called "We Move":
http://www.wemove.org/
I don't know what to make of the fatigue, the subsequent head jerking and diagnosis of Tourette's. It's possible, but Tourette's is not known for systemic symptoms like severe fatigue.
In 2002 you had weakness of the right leg. How did this manifest itself? Did it fatigue with use or cause you to have difficulty with stairs or with lifting it? How long did that weakness last.
Have you ever had trouble "initiating" movement - dificulty getting moving with the first movements, but did okay once you were in motion?
Where are you stiff?Limbs, torso, neck? Does the stiffness relieve with motion or are you always fight thing the stiffness? When you walk do your toes trip on the ground. As you walk are you swinging your legs out and around to clear the ground? Can you walk on your toes? On your heels?
I'm wondering if the stiffness is just that or if it is spasticity. It will be interesting to see what your reflexes are like at the knees and ankles.
Is the back pain also a tightness that hurts if you flex your hip (bring your knee up)? Does it hurt worse after standing for a long time than it does after sitting for a long time. Is it stiff in the morning when you first get up? If the answer is yes to all of these I think you might be deeling with spasticity.
So now, you have stiffness, severe ongoing fatigue, twitches (little muscle jerks that don't move the leg?) still some jerking, some visual stuff (What do you mean by eye "fuzzy"? Does the eye feel dry and fuzzy or is the vision fuzzy?)
Let me say that what you are describing is NOT depression nor is it anxiety, though it could cause both of those. Be firm with the doctor that this is not depression. You wnat more than anything else to be the accomplished person you always were.
When you describe the night sweats, you specified your back. Were there places where you would drench in sweat and not others?? Focal disruption of sweating (too much or too little) can be seen in MS, and in other forms of autonomic neuropathy.
With the lymph node swelling an Infectious Disease evaluation would not be a bad idea at all. Even without that I would recommend retesting for Lyme (though that does not explain the movement problems, jerks and stiffness) and you should definitely have titers run for EBV the mono virus!!
You really need a thorough Neurological exam, a new MRI of your brain and spine done with and without contrast. You have several feature which could fit with MS, but also several that place you more into a movement disorder category. I understand how you don't want to spend money on medical tests (do you have insurance?), but, with the way you are going downhill, I believe you really need to get to the bottom of the problem. The severe fatigue fits more with MS, CFIDS, infection.
I have asked a ton of questions and you don't have much time left tonight. But if you could answer them I will respond tonight. I hope you see this. Quix
Hi Mel & everyone - my appointment is tomorrow so I'm trying to get all my thoughts together. Yesterday I was singing and in the middle of a song my hand holding the microphone started vibrating up to my elbow, I think maybe my other arm was doing it too but I can't remember because I was concentrating on singing. This has happened before but not for awhile. And now when I'm driving my right arm jerks in towards my body so I sometimes have to just use my left arm to steer. I've been feeling really bad lately so I'm glad my appointment is here. Last night I fell asleep on the couch at 8:45 even though I got 8 hours of uninterrupted sleep the night before and a 1 1/2 hour nap in the afternoon. Lately I've been ready for a nap by 10 a.m.
I am really wanting some answers to all of this. It's affecting how I am towards my kids and that's what bothers me most. It's like my mind is so distracted that I can't listen to them like I need to. And Halloween is Wednesday and they'll want to go trick or treating and it's just going to be hard. My parents always made holidays fun for me, but I dread holidays now because they take so much out of me, and I feel bad for not doing enough for my kids.
Like so many people here, I'm tired of not knowing. Thanks to everyone here for your support. I read a lot of your posts and it's good to not be alone on this. I don't know if it's MS I'm dealing with, I'd be kind of surprised if it was, but I really appreciate this forum.
Michelle
I am really wanting some answers to all of this. It's affecting how I am towards my kids and that's what bothers me most. It's like my mind is so distracted that I can't listen to them like I need to. And Halloween is Wednesday and they'll want to go trick or treating and it's just going to be hard. My parents always made holidays fun for me, but I dread holidays now because they take so much out of me, and I feel bad for not doing enough for my kids.
Like so many people here, I'm tired of not knowing. Thanks to everyone here for your support. I read a lot of your posts and it's good to not be alone on this. I don't know if it's MS I'm dealing with, I'd be kind of surprised if it was, but I really appreciate this forum.
Michelle
Heheheh and do you know what I get called?? Michelle!!! hehe There was a Michelle at my work last year and a couple of people call me that because 'it sounds the same' - pfff hehe
LOL... I know what you mean about the folks thing. Had dinner at my folks' place tonight - I got a permanent teaching position at my old school - and Mum offered again to have me back anytime if I need it. It's really comforting to know they're here, but to remain independent nonetheless hehe
Yeah, the waddle thing is apparently disturbing others by the comments and looks I'm getting from people. And my Nanna told me that we have similar memories - geez! She's 81!!! I think it's due to a combo of being tired/exhausted and stiff in the muscles. My legs just don't want to walk normally.
Well I have had severe lower back pain due to Endometriosis before but now it's intermittent thank goodness. Keep me posted on that one especially!
You are so lucky to be seeing the neuro next week!!! :-) Good luck and take care!
Mel
LOL... I know what you mean about the folks thing. Had dinner at my folks' place tonight - I got a permanent teaching position at my old school - and Mum offered again to have me back anytime if I need it. It's really comforting to know they're here, but to remain independent nonetheless hehe
Yeah, the waddle thing is apparently disturbing others by the comments and looks I'm getting from people. And my Nanna told me that we have similar memories - geez! She's 81!!! I think it's due to a combo of being tired/exhausted and stiff in the muscles. My legs just don't want to walk normally.
Well I have had severe lower back pain due to Endometriosis before but now it's intermittent thank goodness. Keep me posted on that one especially!
You are so lucky to be seeing the neuro next week!!! :-) Good luck and take care!
Mel
Hi! I read your timeline and your "Who Am I" post. I love the Who Am I thing - it's nice sometimes to know who you are talking to. You have had a very interesting life. I also was an athlete and I do a lot of singing. I also lived with my parents after college for a couple months. My mom & dad are great but, well, you know! Oh, and I get called Melissa a LOT. I don't know why. My name is Michelle.
The waddle thing is sort of disturbing to me right now. It reminds me of how my grandma walked when she was 80, and I'm 35. I'm not sure why I do it. I thought it was from being tired, but it could be from the stiffness. I notice the stiffness more when I've worked a lot in one day.
I have never understood the lower back pain. If I have to stand for an hour or two it gets really achy. Sometimes I get a sore/tender/bruised feeling on the lower back on each side, a different pain than the one I get from standing. Have had this for years. It comes & goes, used to mention it to the doctor but I don't remember what they said. I think they just said to take Tylenol.
Thank you for the words of encouragement. I hope you can find some answers as well! My neuro visit is October 30th so I will let you know what his thoughts are. Take care!
Michelle
The waddle thing is sort of disturbing to me right now. It reminds me of how my grandma walked when she was 80, and I'm 35. I'm not sure why I do it. I thought it was from being tired, but it could be from the stiffness. I notice the stiffness more when I've worked a lot in one day.
I have never understood the lower back pain. If I have to stand for an hour or two it gets really achy. Sometimes I get a sore/tender/bruised feeling on the lower back on each side, a different pain than the one I get from standing. Have had this for years. It comes & goes, used to mention it to the doctor but I don't remember what they said. I think they just said to take Tylenol.
Thank you for the words of encouragement. I hope you can find some answers as well! My neuro visit is October 30th so I will let you know what his thoughts are. Take care!
Michelle
I too was told initially that it could possibly be anxiety but just the other day was told that this is not what my Doc is thinking anymore, she thinks MS. She took a look at my timeline (much like yours) and had a bit of a think about what's been going on for the past 6 months and what's been happening in the past few weeks and almost immediately said MS. She had never mentioned it before.
You have a heck of a lot of stuff going on, and I have to say we have a lot of similar symptoms. I too am starting to do th waddle because I'm so stiff. People have started looking at me funny hehe I find my hip joints hurt a lot as well as my lower back when I stand too long or walk too far.
Hang in there. There are plenty of people here who can offer you advice and support.
Mel
You have a heck of a lot of stuff going on, and I have to say we have a lot of similar symptoms. I too am starting to do th waddle because I'm so stiff. People have started looking at me funny hehe I find my hip joints hurt a lot as well as my lower back when I stand too long or walk too far.
Hang in there. There are plenty of people here who can offer you advice and support.
Mel
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