Aa
Hi, Peeps--CFS
Hello, everybody~
I'm sorry I haven't posted in a while. I've been checking in on everybody, and everyone seems to be humming right along. There's a lot going on in here! Wanted to be sure T was still OK. Glad you're loping along. We do need to attend to that PA roast soon! Lots of people hanging out around there with no diagnoses yet, too, unfortunately...Penn--Good luck tomorrow. Maybe yours is thisclose! Good luck to anyone else I'm forgetting! Rutey, hang in there!
Anyway, I went to see my World's Most Attentive Neuro last Wednesday, and I've had a lot to wrap my feeble little mind around since we spoke. If some of you remember he spent 3 hours with my husband and me at my first visit, including an unbelievably thorough neuro exam and work up. Wednesday, I expected to go over my NORMAL test results for the PET scan I had done, NORMAL NCV/EMG and thought he'd shoo me out the door back to the psychiatrist's office. (My husband couldn't go with me, unfortunately. His partner's father lay dying in the hospital.)
Well, he spent an hour and a half with me, this time, just talking. I was SO nervous, that I came out and asked him if he thought my symptoms were psychosomatic. He took his time telling me why he thought not. Mostly because I had gone to a psychiatrist when one neuro referred me there. Also, because I was open to the idea that depression or anxiety may be playing a role in my symptoms.
He went over my chart again, and I could tell he was going somewhere with it. He ended up telling me that he had gone through very much the same thing four years ago himself. The shaky Jell-o legs that could barely support his body. The short-term memory loss. Cognitive function deficit. It was Chronic Fatigue Syndrome. Not just that, but his hormones were depleted. He ended up being referred to an endo-
crinologist who prescribed testosterone, among other human growth hormones, and he got back to good health. He wants me to see his doctor. He didn't dismiss my symptoms. He said that when you have some kind of viral agent attacking for a long period, it can injure the central nervous system. That's what has likely happened to me. He said a great deal more, and I wish I could go through it all with you, but it would probably bore you silly. If you have questions, I know you'll ask.
He ordered blood work, and gave me the endocrinologist's name, and adjusted my migraine medication. When I see him in two months, he will prescribe Provigil for me. I asked if he would give it to me now, but he said he just wanted to change one medication at a time. Made sense.
So, I was surprised. I have been thinking MS all this time, and on the drive home, I thought, Oh, my gosh, he's SO wrong! He duped me with his charm and doctorly wiles! But, after a few days I got used to the idea, and of course I have looked up a lot of info, and it makes a lot of sense to me. I promise not to become a militant CFSer. But it seems to make some sense to me. My doctor has spent a lot of time looking at how my body moves and reacts, and he's spoken to and listened to me. I owe it to him to try this other guy out. The symptoms are SOOOO similar to MS it's amazing! But the little clues he's picked up by seeing me in action have made him think CFS, so I'm going to listen to my WMA doc and see if this endo works out.
There is no real treatment, as far as I can see for CFS, so hopefully my hormones ARE out of whack! Maybe that will make me feel better! Thought I'd catch you up on my progress, as it is...
'Zilla*
I'm sorry I haven't posted in a while. I've been checking in on everybody, and everyone seems to be humming right along. There's a lot going on in here! Wanted to be sure T was still OK. Glad you're loping along. We do need to attend to that PA roast soon! Lots of people hanging out around there with no diagnoses yet, too, unfortunately...Penn--Good luck tomorrow. Maybe yours is thisclose! Good luck to anyone else I'm forgetting! Rutey, hang in there!
Anyway, I went to see my World's Most Attentive Neuro last Wednesday, and I've had a lot to wrap my feeble little mind around since we spoke. If some of you remember he spent 3 hours with my husband and me at my first visit, including an unbelievably thorough neuro exam and work up. Wednesday, I expected to go over my NORMAL test results for the PET scan I had done, NORMAL NCV/EMG and thought he'd shoo me out the door back to the psychiatrist's office. (My husband couldn't go with me, unfortunately. His partner's father lay dying in the hospital.)
Well, he spent an hour and a half with me, this time, just talking. I was SO nervous, that I came out and asked him if he thought my symptoms were psychosomatic. He took his time telling me why he thought not. Mostly because I had gone to a psychiatrist when one neuro referred me there. Also, because I was open to the idea that depression or anxiety may be playing a role in my symptoms.
He went over my chart again, and I could tell he was going somewhere with it. He ended up telling me that he had gone through very much the same thing four years ago himself. The shaky Jell-o legs that could barely support his body. The short-term memory loss. Cognitive function deficit. It was Chronic Fatigue Syndrome. Not just that, but his hormones were depleted. He ended up being referred to an endo-
crinologist who prescribed testosterone, among other human growth hormones, and he got back to good health. He wants me to see his doctor. He didn't dismiss my symptoms. He said that when you have some kind of viral agent attacking for a long period, it can injure the central nervous system. That's what has likely happened to me. He said a great deal more, and I wish I could go through it all with you, but it would probably bore you silly. If you have questions, I know you'll ask.
He ordered blood work, and gave me the endocrinologist's name, and adjusted my migraine medication. When I see him in two months, he will prescribe Provigil for me. I asked if he would give it to me now, but he said he just wanted to change one medication at a time. Made sense.
So, I was surprised. I have been thinking MS all this time, and on the drive home, I thought, Oh, my gosh, he's SO wrong! He duped me with his charm and doctorly wiles! But, after a few days I got used to the idea, and of course I have looked up a lot of info, and it makes a lot of sense to me. I promise not to become a militant CFSer. But it seems to make some sense to me. My doctor has spent a lot of time looking at how my body moves and reacts, and he's spoken to and listened to me. I owe it to him to try this other guy out. The symptoms are SOOOO similar to MS it's amazing! But the little clues he's picked up by seeing me in action have made him think CFS, so I'm going to listen to my WMA doc and see if this endo works out.
There is no real treatment, as far as I can see for CFS, so hopefully my hormones ARE out of whack! Maybe that will make me feel better! Thought I'd catch you up on my progress, as it is...
'Zilla*
Finally -- dome answers! Congratulations!!! Wish there were a good pill for CFS, but maybe downthe road...who knows?
Thanks for wishing me luck - surprised you remembered. Think I need it; the doc's picture on the CCf website looks a tad scary... not wearing an orange jumpsuit or anything, but I bet there's one in his little black bag, LOL.
I hope you won't be leaving us now that you're theoretically out of limboland. I would really miss you. You have the best sense of humor:)
Penn
Thanks for wishing me luck - surprised you remembered. Think I need it; the doc's picture on the CCf website looks a tad scary... not wearing an orange jumpsuit or anything, but I bet there's one in his little black bag, LOL.
I hope you won't be leaving us now that you're theoretically out of limboland. I would really miss you. You have the best sense of humor:)
Penn
Well, at least you are getting some answers. A few years ago I wondered if this was my problem, but couldn't get anyone (drs) to listen to me so I just kept on moving forward. It's been a while since I have read up on CFS, but I will do so today.
Like you I have wondered about hormones too. I am post menopause and thought many of my problems were due to going throught this. Just had blood tests in July and nothing was said about my hormones so I guess they are okay, just low B12.
I have been a little more coherent this past week so I decided to sit my hubby down and have a talk with him. We talked about the fact of not having insurance and about how to proceed with me toward some resolution to all my health problems. We decided to just bite the bullet and first have my eyes checked out and then go from there. I know it will be a struggle financially, but it seems like we have been struggling with that problem for years anyway. I just want to know one way or the other what is happening to me. I thank all of you on this board for giving me support and kind words to keep me going thru some really tough times.
No matter what you finally wind up being dxed with, you had better still hang out here with us. I can't imagine this board without you. Take care of yourself and again good luck.
Love & ((((hugs))))
doni
Like you I have wondered about hormones too. I am post menopause and thought many of my problems were due to going throught this. Just had blood tests in July and nothing was said about my hormones so I guess they are okay, just low B12.
I have been a little more coherent this past week so I decided to sit my hubby down and have a talk with him. We talked about the fact of not having insurance and about how to proceed with me toward some resolution to all my health problems. We decided to just bite the bullet and first have my eyes checked out and then go from there. I know it will be a struggle financially, but it seems like we have been struggling with that problem for years anyway. I just want to know one way or the other what is happening to me. I thank all of you on this board for giving me support and kind words to keep me going thru some really tough times.
No matter what you finally wind up being dxed with, you had better still hang out here with us. I can't imagine this board without you. Take care of yourself and again good luck.
Love & ((((hugs))))
doni
Thanks, for "hang in there "comment. My neuro appt is this wednesday 10/10/07. My legs are still spazzing out from the knees down, so Im just being careful how I walk. Hopefully, I will find out more answers. I read your post, and so it looks like you still arent exactly sure whats going on with you. Amazes me how long these things take. IM GLAD WE ARENT HOLDING OUR BREATH.
rutey
rutey
I'm so happy that you are finally getting some answers. I do wish you the best and I hope you will not be a stranger here. We miss you when your gone. Stay in touch and we will all pray that some more answers will come.
I'll be praying,
Carol
I'll be praying,
Carol
hi
My friend has M.E as we call it in England she got it after a heart virus and has had it for three years now she has only just gone back to work part time.
There is a really good person on the FM/CFS forum on here her name is curls and she has so much info on it but she is away on hols at the moment, iv talked alot to her as i have wondered if i have FM and she has been so helpfull, she knows all the treatment out what causes it in the body and all sorts but i expect your neuro explained that to you.
There is a great fibro/cfs chat/message/website to with lots of info and its nice to talk to people who understand if you want the details just say. stress can really effect cfs and it sounds of recent times you have had alot to deal with.
Iv been on the fibro message board and have found so many people like me with sx, iv also been in touch with a local support group and been chatting to people there as i was very low last week as some of you might of read of my posts, i still am but im fighting it.
Im not sure what i have all i know is this last flare has been very painfull to the point i could not cope iv increased my does of lyrica and reduced my diazapam as i dont think thats a great drug to be taking and refused to take the anti-depressant the doctor gave me.
I soon hope to have answers i have my LP,NCS,EMG on the 24th of October and a repeat MRI on the 25th of November but i think if this is all clear i will push to see a rheumy and see if i do have this FM as it can for some be disabling condition so maybe it is that.
Im praying for you Hun, and glad your getting some answers.
Samantha
My friend has M.E as we call it in England she got it after a heart virus and has had it for three years now she has only just gone back to work part time.
There is a really good person on the FM/CFS forum on here her name is curls and she has so much info on it but she is away on hols at the moment, iv talked alot to her as i have wondered if i have FM and she has been so helpfull, she knows all the treatment out what causes it in the body and all sorts but i expect your neuro explained that to you.
There is a great fibro/cfs chat/message/website to with lots of info and its nice to talk to people who understand if you want the details just say. stress can really effect cfs and it sounds of recent times you have had alot to deal with.
Iv been on the fibro message board and have found so many people like me with sx, iv also been in touch with a local support group and been chatting to people there as i was very low last week as some of you might of read of my posts, i still am but im fighting it.
Im not sure what i have all i know is this last flare has been very painfull to the point i could not cope iv increased my does of lyrica and reduced my diazapam as i dont think thats a great drug to be taking and refused to take the anti-depressant the doctor gave me.
I soon hope to have answers i have my LP,NCS,EMG on the 24th of October and a repeat MRI on the 25th of November but i think if this is all clear i will push to see a rheumy and see if i do have this FM as it can for some be disabling condition so maybe it is that.
Im praying for you Hun, and glad your getting some answers.
Samantha
Hi,
I am so happy to hear that your doctor really took a good deal of time to speak with you at the visit... he even shared his own personal history... now that is very interesting... i can see where you first were a little reluctant,but it is possible that you are both going through the same thing... can't hurt to get an eval by a endo.. i hope it works out for the best for you...
take time to let this all sink in... get plenty of rest... and keep us informed how it goes...
you are in my prayers.
GOD bless,
Frann
I am so happy to hear that your doctor really took a good deal of time to speak with you at the visit... he even shared his own personal history... now that is very interesting... i can see where you first were a little reluctant,but it is possible that you are both going through the same thing... can't hurt to get an eval by a endo.. i hope it works out for the best for you...
take time to let this all sink in... get plenty of rest... and keep us informed how it goes...
you are in my prayers.
GOD bless,
Frann
Thanks, everyone, for your notes! It's so nice to hear from you all. Or, yall, as Rutey says. I love that! Good luck NEXT week, Rutey! (Right, let's not hold our breath!)
I am hanging in there with this new Dx, even though Quix thinks my World's Most Attentive Neuro is kind of barking up the wrong tree. He had CFS, so he thinks I have CFS. I have NO lesions on my MRI, and that doesn't help my case with MS. SO, I am just going to hold tight and follow his lead, and see what happens. I really think he IS a very good doctor, and he hasn't sent me off to the psych ward yet!
I'm going to the endo at the 'endo' of the month. He's not in my insurance network, so I hope he'll skip the 1,500 dollar test his receptionist said he normally does. We'll have to talk about that one. Find out what my co-pay is first!
Thanks, Samantha, for all your great info. You should have your answers soon, too, it looks like! Ya hoo!
Doni -- I'm not going anywhere -- I'm keeping my eye on you, girlfriend! You seem better lately, and I'm so glad. Sorry I haven't said Hello in a while. Doesn't mean I'm not paying attention! (((Hugs back!)))
Penn -- I saw your visit post. Not too bad! You got some good testing out of it! I think you're right, though. He keeps the jumpsuit in the bag.
Hot Legs -- I am stranger than most, but I won't be a stranger! Wouldn't leave this group if they told me I had the flu! Feel well!
Frann -- A little sparkle dust for you... Thanks for the reassuring words and prayers. I can always count on you! God bless you, too. Fell well!
Zilla*
I am hanging in there with this new Dx, even though Quix thinks my World's Most Attentive Neuro is kind of barking up the wrong tree. He had CFS, so he thinks I have CFS. I have NO lesions on my MRI, and that doesn't help my case with MS. SO, I am just going to hold tight and follow his lead, and see what happens. I really think he IS a very good doctor, and he hasn't sent me off to the psych ward yet!
I'm going to the endo at the 'endo' of the month. He's not in my insurance network, so I hope he'll skip the 1,500 dollar test his receptionist said he normally does. We'll have to talk about that one. Find out what my co-pay is first!
Thanks, Samantha, for all your great info. You should have your answers soon, too, it looks like! Ya hoo!
Doni -- I'm not going anywhere -- I'm keeping my eye on you, girlfriend! You seem better lately, and I'm so glad. Sorry I haven't said Hello in a while. Doesn't mean I'm not paying attention! (((Hugs back!)))
Penn -- I saw your visit post. Not too bad! You got some good testing out of it! I think you're right, though. He keeps the jumpsuit in the bag.
Hot Legs -- I am stranger than most, but I won't be a stranger! Wouldn't leave this group if they told me I had the flu! Feel well!
Frann -- A little sparkle dust for you... Thanks for the reassuring words and prayers. I can always count on you! God bless you, too. Fell well!
Zilla*
Hi Zilla. I hope the endo can help you. I was on growth hormone for years 2005 and six months of 2006. My testosterone plummeted at age 47 and I could only find an anti-aging doctor to help with hormone replacement. The endos wouldn't give me tes cream because they said I was too young and would get heart disease or prostate cancer. Anyway, the growth hormone was supposed to help with my energy level but I remained zapped of my strength. Beware of the growth hormone. It is very expensive and many insurances won't pay for it.
Sorry Zil, hit the wrong button and it posted before I was finished. I wanted to let you know that my wife reads books by a doctor named Mark Hyman, M.D. He wrote "Ultrametabolism" and two other books. He was a routine conventional medicine doctor who actually got Chronic Fatigue Syndrome. He was deserted as a hypochrondiac by his physician peers. He went to a naturopath in Hawaii to get cured. Turned out he had some kind of lead or mercury poisoning from living in China and exposed to all the pollution. Anway, his books are about how to get energy back through diet etc. In case you are interested....
I wish you the best as you go down this road. Please keep us posted and I will be praying that the mom of five boys gets her energy back. I have six kids...three boys and three girls......Craig
I wish you the best as you go down this road. Please keep us posted and I will be praying that the mom of five boys gets her energy back. I have six kids...three boys and three girls......Craig
Very interesting. Thanks. I have read about your history with the plummeting testosterone. I actually thought of you when my doctor said he takes testosterone! He's exactly 47! Isn't that weird? I know he takes human growth hormones, too. He highly recommends this endo he's sending me to, so I'll go, but I am interested to see if I'm deficient and if so, why I would be. My doc also wants me to join a gym with a personal trainer, and take a good nap each day. When? I have started to take a brisk walk each day, to try to stoke my metabolism. It's a start.
He thinks reigniting my metabolism is going to help me fight the CFS. It sounds like the guy whose books your wife reads thinks the same way. Question, though: Was his illness CFS or metal poisoning or was his CFS caused by poisoning? It's all so hard to distinguish. I keep looking things up for CFS and it looks like MS to me. A lot of the info is pretty old, though. Neuro findings are pretty rare for CFS. I'm confused and disheartened to tell you the truth.
But I so appreciate you writing. Especially with all you've got going on. I hope you got my message on the other post. Hang in there. Six kids! Wow! Two was enough. When they outnumber you, you start to get into real trouble! Wouldn't have it any other way, though!
Thanks again. Feel better!
Zilla*
He thinks reigniting my metabolism is going to help me fight the CFS. It sounds like the guy whose books your wife reads thinks the same way. Question, though: Was his illness CFS or metal poisoning or was his CFS caused by poisoning? It's all so hard to distinguish. I keep looking things up for CFS and it looks like MS to me. A lot of the info is pretty old, though. Neuro findings are pretty rare for CFS. I'm confused and disheartened to tell you the truth.
But I so appreciate you writing. Especially with all you've got going on. I hope you got my message on the other post. Hang in there. Six kids! Wow! Two was enough. When they outnumber you, you start to get into real trouble! Wouldn't have it any other way, though!
Thanks again. Feel better!
Zilla*
Hey, sounds great in a certain kind of way. Most of us are searching for an answer, be it MS or something else. We didn't find each other here out of shear luck. We are all here trying to deal with something we've been diagnosed with, or trying to find out whats really going on.
Most of us just want an answer. Something that makes sense and gives us some peace of mind. Doctors are never going to be 100% correct. But it does bring some peace of mind to know that what you have been feeling and living with is real, and maybe we can't cure it right now, but there are treatments for a lot of things out there that do improve you're quality of life.
If my doctor told me tomorrow that it's not MS, that he thought its all in my head, thats fine, treat me and make me feel better. But don't send me away without an answer and don't leave me with the impression you don't care. Most people don't make up symptoms to garner attention, we may not always describe our symptoms accurately for a variety of reasons, but thats where eight plus years of medical school is supposed to kick in.
I'm really glad you may be on your way to finding some peace of mind and spirit. There may never be a cure for CFS, I truly believe in time there will answers to most medical conditions.
Keep us posted!
Johnny
Most of us just want an answer. Something that makes sense and gives us some peace of mind. Doctors are never going to be 100% correct. But it does bring some peace of mind to know that what you have been feeling and living with is real, and maybe we can't cure it right now, but there are treatments for a lot of things out there that do improve you're quality of life.
If my doctor told me tomorrow that it's not MS, that he thought its all in my head, thats fine, treat me and make me feel better. But don't send me away without an answer and don't leave me with the impression you don't care. Most people don't make up symptoms to garner attention, we may not always describe our symptoms accurately for a variety of reasons, but thats where eight plus years of medical school is supposed to kick in.
I'm really glad you may be on your way to finding some peace of mind and spirit. There may never be a cure for CFS, I truly believe in time there will answers to most medical conditions.
Keep us posted!
Johnny
Hi again. Mark Hyman had CFS caused by the poisoning, according to his writings. He says that the biggest enemy to metabolism is high fructose corn syrup found in many drinks and frozen foods. he said it actually resets your metabolism to slow down. if you avoid high fructose corn syrup in about six to eight weeks your metabolism will reset itself. He also advocates drinking green tea and taking green tea supplements, which also speed up the metabolism. Just thought I would give you a summary of one of his books. He also says that many processed foods cause inflammation and fatigue in the body. However, while some of this worked for my wife, none of his suggestions worked for me. Wish they had....craig
Wow very interesting Zilla. I am also very glad to hear he took his time and was there for you. It does sound like he is a very good doctor even if he is wrong right now. I have often thought mine might also be wrong, but he is the only one who has helped me so far so he is the best I have, and he cares, and boy does that mean alot.
I hear ya Johnny. I think the vast majority of adults don't have the time or inclination be desiring loads of sometimes painful tests. Its just not what we would want to be doing if we had the choice! You are so right, we know something is wrong, and all we want is an answer.
I would love to hear more Zilla if you would want to post it. Does he think that after being attacked by a viral agent, that the nervous system can recover (even to some degree if not fully) or does he feel that once what damge is done, is done? Or did he happen to say?
Hugs to you!
Jazzy
I hear ya Johnny. I think the vast majority of adults don't have the time or inclination be desiring loads of sometimes painful tests. Its just not what we would want to be doing if we had the choice! You are so right, we know something is wrong, and all we want is an answer.
I would love to hear more Zilla if you would want to post it. Does he think that after being attacked by a viral agent, that the nervous system can recover (even to some degree if not fully) or does he feel that once what damge is done, is done? Or did he happen to say?
Hugs to you!
Jazzy
I really appreciate you sharing your story on here. I have only recently been adding to a couple of forums on here - with a wide variety of symptoms and no real DX I'm not sure which 'areas' I need to be posting in hehe
My story:
I'm a 24 y.o. female who has been sick on and off for 11 years. I had an undiagnosed illness when I was 13, which lasted about 10 weeks. The main symptoms were extreme lower back pain which ended up with my not being able to walk and in a wheelchair, fatigue and nausea. They did a barrage of tests and came up with a few little things but nothing major - minor heart murmur, cysts on ovaries etc. I remember going to a neuro but evidently nothing came of it. (Sorry, have memory problems so can't remember everything)
After I suddenly got better I continued to experience odd symptoms off and on for the rest of high school - a feeling of incontinence (constantly feeling the need to go to the toilet), dizziness (bouts of vertigo), constipation and diaroea (Dr thought it was IBS at one point) and especially nausea. Somehow I got through that and made it to University.
In 2002 I started my first year of Law. I soon got Glandular Fever and things went downhill from there. I started experiencing a whole heap of problems and in 2003 I was diagnosed with both Endometriosis and Chronic Fatigue Syndrome. I became so ill that I had to quit work and uni and move back to the country to live with my parents. 6 months later I was well enough to move back to the city, start working full time and studying part time.
That was in 2005 and I was doing pretty well, despite occasional minor relapses, until early this year. Now I did begin my career as a High School Teacher this year, but I have been in stressful situations before so I was immediately suspicious as to why I got so sick. In April I took a plane trip interstate which resulted in (apparent) Labrythitis - I was constantly dizzy, nauseasted and fatigued. I felt like I was constantly on a ship and started experiencing a whole heap of other symptoms. After a while my Dr thought I must have Glandular Fever again and kinda blew me off.
When I started to realise that I had symptoms much like I'd had before I got nervous. I also experienced weird 'visual disturbances' which my Dr thinks may have been seizures. Apparently I don't have the Syndrome again but I definitely have problems. (Yeah, like I didn't know that)
My current symptoms are: fatigue, irritability, memory loss, confusion/impaired cognition, forgetting words, mood swings, dizziness/vertigo, headaches/migraines, sweating, heart palpitations, anxiety (possible panic attacks). In the last few weeks I have started to experience numbness and tingling in my hands and feet, except they can sometimes be only a few fingers or toes, not the whole limb. I've also started noticing I have less ability to hold things - I have started dropping things a lot and also missing my mouth when trying to drink, which normally wouldn't make me wonder but it's happening a lot. In the last week I have also experienced odd pain in my left arm, particularly in my forearm and today it has been weird all day, almost like it's trembling, and in my left leg.
I have a dx of Postural Hypotension, Irritable Heart and Fatigue secondary to Nasal Inflammation (Sinusitis/Labrynthitis). I had a CT scan recently and only found cysts in my maxillary sinus. I have an appointment with a neuro on 26th Nov - I had one in two weeks but that neuro is sick and had to cancel my appointment so I needed a new referral. I'm mainly going to the neuro for the suspected epilepsy (Temporal Lobe Epilepsy) but I have to wonder with my symptoms whether I might have MS? CFS and MS are very similar and after having similar episodes in 1996, 2002 and 2007 I wonder if it is possible they were all from the same thing.
Sorry this was so long, but I'd like to offer you hope with your CFS that it's not a death sentence. If you have any questions please do not hesitate to ask - I would be only so happy to help.
Mel
My story:
I'm a 24 y.o. female who has been sick on and off for 11 years. I had an undiagnosed illness when I was 13, which lasted about 10 weeks. The main symptoms were extreme lower back pain which ended up with my not being able to walk and in a wheelchair, fatigue and nausea. They did a barrage of tests and came up with a few little things but nothing major - minor heart murmur, cysts on ovaries etc. I remember going to a neuro but evidently nothing came of it. (Sorry, have memory problems so can't remember everything)
After I suddenly got better I continued to experience odd symptoms off and on for the rest of high school - a feeling of incontinence (constantly feeling the need to go to the toilet), dizziness (bouts of vertigo), constipation and diaroea (Dr thought it was IBS at one point) and especially nausea. Somehow I got through that and made it to University.
In 2002 I started my first year of Law. I soon got Glandular Fever and things went downhill from there. I started experiencing a whole heap of problems and in 2003 I was diagnosed with both Endometriosis and Chronic Fatigue Syndrome. I became so ill that I had to quit work and uni and move back to the country to live with my parents. 6 months later I was well enough to move back to the city, start working full time and studying part time.
That was in 2005 and I was doing pretty well, despite occasional minor relapses, until early this year. Now I did begin my career as a High School Teacher this year, but I have been in stressful situations before so I was immediately suspicious as to why I got so sick. In April I took a plane trip interstate which resulted in (apparent) Labrythitis - I was constantly dizzy, nauseasted and fatigued. I felt like I was constantly on a ship and started experiencing a whole heap of other symptoms. After a while my Dr thought I must have Glandular Fever again and kinda blew me off.
When I started to realise that I had symptoms much like I'd had before I got nervous. I also experienced weird 'visual disturbances' which my Dr thinks may have been seizures. Apparently I don't have the Syndrome again but I definitely have problems. (Yeah, like I didn't know that)
My current symptoms are: fatigue, irritability, memory loss, confusion/impaired cognition, forgetting words, mood swings, dizziness/vertigo, headaches/migraines, sweating, heart palpitations, anxiety (possible panic attacks). In the last few weeks I have started to experience numbness and tingling in my hands and feet, except they can sometimes be only a few fingers or toes, not the whole limb. I've also started noticing I have less ability to hold things - I have started dropping things a lot and also missing my mouth when trying to drink, which normally wouldn't make me wonder but it's happening a lot. In the last week I have also experienced odd pain in my left arm, particularly in my forearm and today it has been weird all day, almost like it's trembling, and in my left leg.
I have a dx of Postural Hypotension, Irritable Heart and Fatigue secondary to Nasal Inflammation (Sinusitis/Labrynthitis). I had a CT scan recently and only found cysts in my maxillary sinus. I have an appointment with a neuro on 26th Nov - I had one in two weeks but that neuro is sick and had to cancel my appointment so I needed a new referral. I'm mainly going to the neuro for the suspected epilepsy (Temporal Lobe Epilepsy) but I have to wonder with my symptoms whether I might have MS? CFS and MS are very similar and after having similar episodes in 1996, 2002 and 2007 I wonder if it is possible they were all from the same thing.
Sorry this was so long, but I'd like to offer you hope with your CFS that it's not a death sentence. If you have any questions please do not hesitate to ask - I would be only so happy to help.
Mel
Thanks, all for your posts! I wish I could reply without bumping this thread back up. So many others need to get theirs up to the top. But I wanted to reply.
Craig, too ~~I think I've heard that guy speak. I know high fructose corn syrup is just awful. I never buy it in cereal or drinks for my children. There is a lot of diabetes in my family, so I am always careful to watch my sugar intake, and I heard some doc talking about how especially awful high fructose corn syrup is over cane sugar. Totally with you there. Wish the advice had worked for you!
And I drink green tea every day! Which is not to say I'm uberhealthy. Those are two things I do, and I try to eat whole grains over processed anything, and eat fruits and veggies every day. I stuff them in even when I am too full. Sounds pleasant, I know! But whole grains fill you up! I sound a lot healthier than I am, probably. I could do to lose twenty pounds. I am too tired to exercise -- bad excuse! I just started walking per my doc's orders, though.
Johnny~~Glad to hear from you. Thanks! I agree that it feels like I'm at least 'getting somewhere,' and I do have a great doctor who is not brushing me off. I'm luckier than so many here! You're right that most people would not go from doc to doc, making up symptoms to garner attention. It's quite rare. That's why these neuros are so lazy to not investigate symptoms further. I think that's why Quix is so determined to help people here. Hang in there, Johnny! Thanks again!
Jazzy! Good to hear from you! Yes, my doc was great, spending so much time with me. He made it sound like the nervous system deficits would recover, but he himself has to be very vigilant in taking care of himself in order to have his short-term memory intact. He told me that on the day of my appointment, he had gone downstairs in the building to bottom line -- 'hit his wife up for lunch money' -- she works in the same building. He hadn't exercised that day, or the day before. By the time he got down to her floor, he had forgotten why he'd gone down. She had to kind of work it out of him. Not a big deal, but his point was that to this day, he is at only 80% if he doesn't take care of himself.
He's a VERY sharp guy, and he spoke very smoothly and confidently. We had a very fun time talking, he's actually very funny, and said I brought out his sense of humor. It is the short-term memory that trips him up. CFS takes a long time to recover from. He has had it for a very long time, over four years. He didn't go into too much about what other neuro symptoms he had, if any. He only spoke of limb weakness and short-term memory problems. These are common. The things I have would not be so common. So, I am reluctant to totally be on board about the Dx. But I do believe in my doc, and will see what happens.
You know, it's possible you have a FEW things going on, Jazzy. I hope you are able to get to the bottom of things so that you're satisfied with your treatment. Good luck! Hugs back!
Oz~~Welcome! Don't ever worry about being too long! (As you can see!) It's so sweet that you are trying to comfort ME with all YOU have going on! What a sweetheart!
Boy, where to start? What a mixed bag of symptoms you have....And for so long! I really don't know what to say. It sounds like something Quix will have to address. I was glad to see you re-posted your very own thread. I was going to suggest it. I think you need your own PAGE!
Sounds like you have a drinking problem! Could it be because you're a high school teacher? (Sorry, weak attempt at humor!) That is so strange. It could be some kind of dysmetria. Have you had a good neuro work-up? I suspect not. Let's see what Quix has to say about all this. I'll be on the look out for you. Hang in there, and thanks so much for your well wishes!
Zilla*
Craig, too ~~I think I've heard that guy speak. I know high fructose corn syrup is just awful. I never buy it in cereal or drinks for my children. There is a lot of diabetes in my family, so I am always careful to watch my sugar intake, and I heard some doc talking about how especially awful high fructose corn syrup is over cane sugar. Totally with you there. Wish the advice had worked for you!
And I drink green tea every day! Which is not to say I'm uberhealthy. Those are two things I do, and I try to eat whole grains over processed anything, and eat fruits and veggies every day. I stuff them in even when I am too full. Sounds pleasant, I know! But whole grains fill you up! I sound a lot healthier than I am, probably. I could do to lose twenty pounds. I am too tired to exercise -- bad excuse! I just started walking per my doc's orders, though.
Johnny~~Glad to hear from you. Thanks! I agree that it feels like I'm at least 'getting somewhere,' and I do have a great doctor who is not brushing me off. I'm luckier than so many here! You're right that most people would not go from doc to doc, making up symptoms to garner attention. It's quite rare. That's why these neuros are so lazy to not investigate symptoms further. I think that's why Quix is so determined to help people here. Hang in there, Johnny! Thanks again!
Jazzy! Good to hear from you! Yes, my doc was great, spending so much time with me. He made it sound like the nervous system deficits would recover, but he himself has to be very vigilant in taking care of himself in order to have his short-term memory intact. He told me that on the day of my appointment, he had gone downstairs in the building to bottom line -- 'hit his wife up for lunch money' -- she works in the same building. He hadn't exercised that day, or the day before. By the time he got down to her floor, he had forgotten why he'd gone down. She had to kind of work it out of him. Not a big deal, but his point was that to this day, he is at only 80% if he doesn't take care of himself.
He's a VERY sharp guy, and he spoke very smoothly and confidently. We had a very fun time talking, he's actually very funny, and said I brought out his sense of humor. It is the short-term memory that trips him up. CFS takes a long time to recover from. He has had it for a very long time, over four years. He didn't go into too much about what other neuro symptoms he had, if any. He only spoke of limb weakness and short-term memory problems. These are common. The things I have would not be so common. So, I am reluctant to totally be on board about the Dx. But I do believe in my doc, and will see what happens.
You know, it's possible you have a FEW things going on, Jazzy. I hope you are able to get to the bottom of things so that you're satisfied with your treatment. Good luck! Hugs back!
Oz~~Welcome! Don't ever worry about being too long! (As you can see!) It's so sweet that you are trying to comfort ME with all YOU have going on! What a sweetheart!
Boy, where to start? What a mixed bag of symptoms you have....And for so long! I really don't know what to say. It sounds like something Quix will have to address. I was glad to see you re-posted your very own thread. I was going to suggest it. I think you need your own PAGE!
Sounds like you have a drinking problem! Could it be because you're a high school teacher? (Sorry, weak attempt at humor!) That is so strange. It could be some kind of dysmetria. Have you had a good neuro work-up? I suspect not. Let's see what Quix has to say about all this. I'll be on the look out for you. Hang in there, and thanks so much for your well wishes!
Zilla*
Awww, you brought the biggest smile to my face :-) Thanks for the humour! You're actually SO right! hehehe Teachers do tend to be big drinkers, though lately have had to shelve the alcohol - makes me soooo much worse.
I haven't yet had a neuro work up - have an appointment for Nov 26th and am looking forward to it. Will have to look dystmetria up - have no idea what that is.
Thanks again for replying so soon - it's wonderful to have other people out there who are supportive.
Mel
I haven't yet had a neuro work up - have an appointment for Nov 26th and am looking forward to it. Will have to look dystmetria up - have no idea what that is.
Thanks again for replying so soon - it's wonderful to have other people out there who are supportive.
Mel
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