Aa
I feel so discouraged
Sometimes I would just like to scream and cry but I find in the end, it still doesn't solve anything. Been a while since I've logged in, but hanging out periodically. I'm still in limboland and waiting for my appointment with the neurologist. I keep waking up in the middle of the night (about 2-3 am) and can't go back to sleep because I have all these paresthesias. Most nights, it is because my hips and knees hurt and the muscles in my legs feel like they are perpetually 90% of the way into a spasm. A few times, it has been because I'll have a prickling, itchy sensation all over that won't go away.
A few days ago, I woke up with a nasty looking sore throat; lymph nodes have been swollen for about a week. Saw doctor at work that I'd not seem before and after the strep test came back negative, he asked if I had ever had mono. I wanted to cry. All of this started 6 years ago with the diagnosis of chronic reactivated Epstein Barr; and every time all this stuff cycles back through, that is all they ever find.
I've been through oodles of blood tests for kidney, liver, thryoid, muscle wasting, rheumatic factors and sed rate, lyme disease . . . . everything that my doctor can think of . . . . . and all that ever comes back is an EBV IgG level that is about 10-20 times of what is considered positive.
I feel so frustrated. I look good but feel terrible and have no way to explain what is wrong. It is affecting my work, it is affecting my family, and I'm finding it very hard to not get depressed . . . .
Guess I just needed a place to vent that I thought someone might understand.
Thanks for listening
A few days ago, I woke up with a nasty looking sore throat; lymph nodes have been swollen for about a week. Saw doctor at work that I'd not seem before and after the strep test came back negative, he asked if I had ever had mono. I wanted to cry. All of this started 6 years ago with the diagnosis of chronic reactivated Epstein Barr; and every time all this stuff cycles back through, that is all they ever find.
I've been through oodles of blood tests for kidney, liver, thryoid, muscle wasting, rheumatic factors and sed rate, lyme disease . . . . everything that my doctor can think of . . . . . and all that ever comes back is an EBV IgG level that is about 10-20 times of what is considered positive.
I feel so frustrated. I look good but feel terrible and have no way to explain what is wrong. It is affecting my work, it is affecting my family, and I'm finding it very hard to not get depressed . . . .
Guess I just needed a place to vent that I thought someone might understand.
Thanks for listening
Sorry you are feeling so awful and discouraged. All I can offer you is a bit of encouragement.
Keep trying to find answers. You’ll find them, but it is not easy when you are exhausted and all you get are shrugs and head shakes.
One day a doctor will connect the dots and give you answers.
Until that day, try to hang in there and stick around here for support.
Good luck at the neurologist.
Wanna
Keep trying to find answers. You’ll find them, but it is not easy when you are exhausted and all you get are shrugs and head shakes.
One day a doctor will connect the dots and give you answers.
Until that day, try to hang in there and stick around here for support.
Good luck at the neurologist.
Wanna
A warm bath does help but only while I'm in it. Getting up and stretching or even just putting pressure through my legs helps but as soon as I lie back down . . . . its here we go again. Needless to say, I've gotten caught up on a lot of my reading. Fortunately, I've not had my paresthesias and spasms terribly long (started in January with the last cycle of whatever this is).
I tend to push the expiration dates of meds -- I figure that it was worth a try. I'm going to take everything in to my appointment on Tuesday. I hope that she'll have some answers or at least a plan. Word around the hospital where I work is that this neuro is a BIG tester. Poke me, prod me, whatever -- just make it worth my while.
I tend to push the expiration dates of meds -- I figure that it was worth a try. I'm going to take everything in to my appointment on Tuesday. I hope that she'll have some answers or at least a plan. Word around the hospital where I work is that this neuro is a BIG tester. Poke me, prod me, whatever -- just make it worth my while.
I would be interested in what the neurologist would have to say about treating the muscle spasms. My neurologist was on vacation when it started, and so my GP prescribed Zanaflex. (My neurologist's colleague wouldn't prescribe me any because I am not diagnosed with anything) I usually cut it in two, but it does knock me out also. I haven' t had to take too many. thankfully. Does a warm bath help at all? You probably know all the stretching exercises that help too???
My guess would be that if your Rx's are 4 years old, they are probably past the manufacturer's expiration date??
Definitely let us know how your appt. on Tuesday goes.
Stacey
My guess would be that if your Rx's are 4 years old, they are probably past the manufacturer's expiration date??
Definitely let us know how your appt. on Tuesday goes.
Stacey
Thanks for the encouragement ladies. Although crying while reading it, it does significantly help to know that there are others out there who understand the pure frustration of it all.
humming4u: what led me to the thought of MS? Probably the fact that everything else that I'm aware of has been ruled out. I am a physical therapist, so I know enough to be very dangerous. The more in depth that I started researching, particularly after accidently stumbling on this forum, the more that things started to sound very similar to what is going on with me. I have cycles of exacerbation of ??? (reactivated epstein barr) in which I have exhaustion (get up out of bed just to lie back down on the floor in the closet or bathroom), migraines, brain fog, problems with memory, worsening of paresthesias, vertigo, facial pain, visual changes, low grade fevers, bladder urgency and frequency and a host of other stuff. This has been cycling through since a few months after the birth of my 1st child and the worst time came (had me out of work for almost 2 weeks) a few months after the birth of my 2nd child. This is another thing that has made me question the MS -- tends to be exacerbated after childbirth and in remission during pregnancy. Not that I want MS, I just want a name for what is wrong; I just want some type of a plan to address what is wrong. I'm so tired of being told that it is because I work full time and have young children. Thank you so much for your prayers.
Elaine: I sincerely appreciate your prayers and continue to keep you and Craig on my prayer list. My daughter is 5, and my son is 16 months old. My neuro appointment actually got moved up due to a cancellation. Now scheduled this Tuesday at 1pm. I'll be interested in what she does. My PCP is sending me here because he thinks she will be less likely to blow me off like the other neuro did last summer. He was convinced that I had a brain tumor or pseudotumor. Once the MRI was negative for tumor, he scheduled a lumbar puncture. He had them check opening pressure then check the spinal fluid for malignancy, glucose, and protein. Didn't check for anything else then when pressures were normal, said that there was nothing else he could do for me.
Quix: I would be happy to do a consult. It would give me something else to focus on other than me :-) Yes, you gave me the information in a post a while ago about the EBV. Do you know though, do the people with chronic high levels continue to cycle back and forth into periods of exacerbation? I just feel like this isn't normal.
Stacey: I don't have anything for the symptoms. I've tried taking benedryl a few times but feel so hung over in the morning. I have 4 y/o prescriptions for Elivil, Ultram, Darvocet, Neurontin, and Flexeril from a neck surgery I had in 2004 -- I've tried it all but the Neurontin and Flexeril. Maybe I'll try the Flexeril tonight. My body just doesn't seem to process meds well -- most seem to make me feel even more exhausted. My PCP discussed treating the symptoms but opted to try to figure out what the problem is first. My doctor did massive testing on my EBV -- not sure if that is the same testing that Speechgeek is getting. The tests detected absolutely no virus in my system even though the IgG levels go off the scale when I go into an exacerbation of whatever this is. It is like my body is fighting something that isn't there.
humming4u: what led me to the thought of MS? Probably the fact that everything else that I'm aware of has been ruled out. I am a physical therapist, so I know enough to be very dangerous. The more in depth that I started researching, particularly after accidently stumbling on this forum, the more that things started to sound very similar to what is going on with me. I have cycles of exacerbation of ??? (reactivated epstein barr) in which I have exhaustion (get up out of bed just to lie back down on the floor in the closet or bathroom), migraines, brain fog, problems with memory, worsening of paresthesias, vertigo, facial pain, visual changes, low grade fevers, bladder urgency and frequency and a host of other stuff. This has been cycling through since a few months after the birth of my 1st child and the worst time came (had me out of work for almost 2 weeks) a few months after the birth of my 2nd child. This is another thing that has made me question the MS -- tends to be exacerbated after childbirth and in remission during pregnancy. Not that I want MS, I just want a name for what is wrong; I just want some type of a plan to address what is wrong. I'm so tired of being told that it is because I work full time and have young children. Thank you so much for your prayers.
Elaine: I sincerely appreciate your prayers and continue to keep you and Craig on my prayer list. My daughter is 5, and my son is 16 months old. My neuro appointment actually got moved up due to a cancellation. Now scheduled this Tuesday at 1pm. I'll be interested in what she does. My PCP is sending me here because he thinks she will be less likely to blow me off like the other neuro did last summer. He was convinced that I had a brain tumor or pseudotumor. Once the MRI was negative for tumor, he scheduled a lumbar puncture. He had them check opening pressure then check the spinal fluid for malignancy, glucose, and protein. Didn't check for anything else then when pressures were normal, said that there was nothing else he could do for me.
Quix: I would be happy to do a consult. It would give me something else to focus on other than me :-) Yes, you gave me the information in a post a while ago about the EBV. Do you know though, do the people with chronic high levels continue to cycle back and forth into periods of exacerbation? I just feel like this isn't normal.
Stacey: I don't have anything for the symptoms. I've tried taking benedryl a few times but feel so hung over in the morning. I have 4 y/o prescriptions for Elivil, Ultram, Darvocet, Neurontin, and Flexeril from a neck surgery I had in 2004 -- I've tried it all but the Neurontin and Flexeril. Maybe I'll try the Flexeril tonight. My body just doesn't seem to process meds well -- most seem to make me feel even more exhausted. My PCP discussed treating the symptoms but opted to try to figure out what the problem is first. My doctor did massive testing on my EBV -- not sure if that is the same testing that Speechgeek is getting. The tests detected absolutely no virus in my system even though the IgG levels go off the scale when I go into an exacerbation of whatever this is. It is like my body is fighting something that isn't there.
It sounds like you are really miserable and wanting answers like so many of us here! I am so sorry you feel like this! I am having the same sleep issues that you are. I don't have the muscle stiffness all the time, but when I do...I wake up in the middle of the night too. You just can't really relax to sleep if your muscles are not relaxing. Do you have some kind of muscle relaxant to take when this happens? Sometimes, when nothing else works, that is what finally breaks that cycle of spasm for me.
I know what you mean about affecting every aspect of your life. I try to hold it together and mostly people around me really don't know when I am having a bad day. Some days I think it is overwhelming and I get angry about not being able to really plan my life or look too far down the road. I had just started a new job a few months before this all started and I am sure on some level, my co-workers think I am some nut-job. They tell me," you are healthy"...."you don't WANT MS"....Do you think I WANT ANYTHING to be wrong w/me??? I often wonder if the fact that we don't "look sick" doesn't hinder us from getting a diagnosis??
One of our other members Speechgeek has also just recently had a high EBV titer come back. Her infectious disease doctor was going to do further tests to see if it is "asleep" or not.
My family has had to get used to a dustier house and maybe doing a load of laundry themselves. I am just not the same and I just can't feel guilty about it. I seriously do the best I can, just like I am sure you do. Some days are just going to be better than others. Try not to put any extra pressure on yourself!!
I hope that you will get some answers from the neurologist. Let us know what he tells you and there are so many friendly and knowledgable people on here to answer any questions that you might have. This is a great place to vent also!
Stacey
I know what you mean about affecting every aspect of your life. I try to hold it together and mostly people around me really don't know when I am having a bad day. Some days I think it is overwhelming and I get angry about not being able to really plan my life or look too far down the road. I had just started a new job a few months before this all started and I am sure on some level, my co-workers think I am some nut-job. They tell me," you are healthy"...."you don't WANT MS"....Do you think I WANT ANYTHING to be wrong w/me??? I often wonder if the fact that we don't "look sick" doesn't hinder us from getting a diagnosis??
One of our other members Speechgeek has also just recently had a high EBV titer come back. Her infectious disease doctor was going to do further tests to see if it is "asleep" or not.
My family has had to get used to a dustier house and maybe doing a load of laundry themselves. I am just not the same and I just can't feel guilty about it. I seriously do the best I can, just like I am sure you do. Some days are just going to be better than others. Try not to put any extra pressure on yourself!!
I hope that you will get some answers from the neurologist. Let us know what he tells you and there are so many friendly and knowledgable people on here to answer any questions that you might have. This is a great place to vent also!
Stacey
When you were here before did I give you some of the info I have on chronic, reactivated EBV, and the link between higher levels of EBV and developing MS?
Also, you are a PT, right? I have a question. Would you be willing to do a consult, or is that putting too much stress on someone who has used up her last poor nerve?
Quix
Also, you are a PT, right? I have a question. Would you be willing to do a consult, or is that putting too much stress on someone who has used up her last poor nerve?
Quix
I am so very sorry that you are going through this. I can imagine how difficult it is to work as a physical therapist and be suffering with your own problems. How old are your children?
I don't know much about chronic Epstein Barr. I'll have to read up on it.
When is your neuro appt?
Please take care and keep in touch. I hope the appt is coming up soon with the neuro.
Elaine
I don't know much about chronic Epstein Barr. I'll have to read up on it.
When is your neuro appt?
Please take care and keep in touch. I hope the appt is coming up soon with the neuro.
Elaine
tired...and that you are, and with very good reason.one, your not getting enough sleep at all, could you ask for something to help with that?
I take lunesta, have for a couple of years, and its been my Godsend. I too, am a limbolander,witha chronic reactivated EB.nothing else found ..yet,I guess.
I look okay to others,but feel terrible an awful lot too.my depression seems to cycle, do okay for awhile and then, here I go again. My Mri had small leisions,but not alarming enough. Have you had a spinal? and what symptoms led you to concider MS.
severe head pain sent me, and tingles and cog fog stuff.
i'm trying to deside if I need to seek out new doctors or not, all the energy,and hope involved has me worn out already! I hurt all over , and have for 12 years,oh, i do have dx of fibro,but feel more is wrong now, but have you been talked to about that yet either ?
i'm sorry things are hard for you right now, and I do understand. try not to consider the way your family is effected cause its not under your control dear,i'm sure you do your best,and that might be a different best, but love will cover all,and if thats known and shared, things will turn out okay.you'll be in my prayers to night,i hope thats okay?
I take lunesta, have for a couple of years, and its been my Godsend. I too, am a limbolander,witha chronic reactivated EB.nothing else found ..yet,I guess.
I look okay to others,but feel terrible an awful lot too.my depression seems to cycle, do okay for awhile and then, here I go again. My Mri had small leisions,but not alarming enough. Have you had a spinal? and what symptoms led you to concider MS.
severe head pain sent me, and tingles and cog fog stuff.
i'm trying to deside if I need to seek out new doctors or not, all the energy,and hope involved has me worn out already! I hurt all over , and have for 12 years,oh, i do have dx of fibro,but feel more is wrong now, but have you been talked to about that yet either ?
i'm sorry things are hard for you right now, and I do understand. try not to consider the way your family is effected cause its not under your control dear,i'm sure you do your best,and that might be a different best, but love will cover all,and if thats known and shared, things will turn out okay.you'll be in my prayers to night,i hope thats okay?
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