kiya
04-25-2008, 02:54 PM
I have been ill for around four years now and am not really any closer to a diagnosis. It doesn't help that I rarely see a doctor, but I don't like to go because each time I do I'm told it's probably "mild depression".
A few years ago I started to feel tired. Not usual tiredness but more of a fatigue that completely sapped my energy. I make myself do all the stuff I used to do and more, and at the end of the day I'm completely exhausted. It's like I have what I call my "background fatigue" (which is always there) and "exertional fatigue" (which I get from working or socialising etc., which is alleviated by a night's sleep). At the same time, I started experiencing pins and needles in my hands and arms during the night which woke me up. Although I don't get this so much anymore, my eyesight has been deteriorating and I often get blurring of my vision (I wear glasses, but get the blurriness when I'm wearing them). I also have continuously cold hands and feet. Sometimes I get unbearable aches in my legs and I always get aches in my legs when I climb stairs.
For the past 3 months or so I've been having problems with my balance. It feels like things are 'dropping' away from me - say, a table in front of me will look like it's constantly falling away. I keep tripping over my feet and feeling giddy, even when I'm sitting down.
Amazingly, I don't feel depressed. I enjoy my job, have a good network of close friends and enjoy socialising. I just feel frustrated with things how they are. I had a tentative diagnosis of CFS/ME about 5 months after I first went to the doctor. I've also had another doctor suggest I might be hypothyroid. But no one seems to want to help or give advice as to how I can improve my symptoms. I also recently came across information about MS and wondered whether my symptoms fit that.
It's all very confusing. Any enlightenment gratefully appreciated!
A few years ago I started to feel tired. Not usual tiredness but more of a fatigue that completely sapped my energy. I make myself do all the stuff I used to do and more, and at the end of the day I'm completely exhausted. It's like I have what I call my "background fatigue" (which is always there) and "exertional fatigue" (which I get from working or socialising etc., which is alleviated by a night's sleep). At the same time, I started experiencing pins and needles in my hands and arms during the night which woke me up. Although I don't get this so much anymore, my eyesight has been deteriorating and I often get blurring of my vision (I wear glasses, but get the blurriness when I'm wearing them). I also have continuously cold hands and feet. Sometimes I get unbearable aches in my legs and I always get aches in my legs when I climb stairs.
For the past 3 months or so I've been having problems with my balance. It feels like things are 'dropping' away from me - say, a table in front of me will look like it's constantly falling away. I keep tripping over my feet and feeling giddy, even when I'm sitting down.
Amazingly, I don't feel depressed. I enjoy my job, have a good network of close friends and enjoy socialising. I just feel frustrated with things how they are. I had a tentative diagnosis of CFS/ME about 5 months after I first went to the doctor. I've also had another doctor suggest I might be hypothyroid. But no one seems to want to help or give advice as to how I can improve my symptoms. I also recently came across information about MS and wondered whether my symptoms fit that.
It's all very confusing. Any enlightenment gratefully appreciated!
Sponsor
MSJayhawk
04-25-2008, 07:03 PM
First thing is to see a doctor on a regular basis for testing. Without criteria testing, it would be difficult to know whether you case involves CFS-MS-Lupus-Lyme or other disease. If you want a diagnosis, you need to pro-actively seek it.
MSNik
04-25-2008, 08:52 PM
Agreed. There is no way anyone can help you, if you dont seek help for yourself. There are alot of diagnostic tests which are virtually painless, which can both bring you closer to a diagnosis and rule out other things...
mary63
04-26-2008, 02:32 AM
Yes thats for real- i had to refer myself to a neurologist privately and request an MRI...its almost like the GPs don't want to believe you might have MS!!! i think they are as scared of it as the rest of the population ( unless they are an expert!!)...
kiya
04-26-2008, 05:39 AM
Thank you for your replies. I'm going to see a doctor on Monday, but I've been fobbed off so many times with a packet of antidepressant tablets that I dread seeing the doctor. They never seem to do anything. In the past I've paid for private consultations, but in the UK you still have to go through your GP to do this. Because going to the doctor actually makes me feel down about things, I avoid it. Stupid, I know...
mary63
04-26-2008, 06:42 AM
Thank you for your replies. I'm going to see a doctor on Monday, but I've been fobbed off so many times with a packet of antidepressant tablets that I dread seeing the doctor. They never seem to do anything. In the past I've paid for private consultations, but in the UK you still have to go through your GP to do this. Because going to the doctor actually makes me feel down about things, I avoid it. Stupid, I know...
Yes know how you feel...its particularly hard when you have a history of anxiety like me... i know my GP just thinks this is my anxiety again- i wish it was! You feel stupid and neurotic when you go there.
Yes know how you feel...its particularly hard when you have a history of anxiety like me... i know my GP just thinks this is my anxiety again- i wish it was! You feel stupid and neurotic when you go there.
kiya
04-27-2008, 05:31 AM
I saw an endocrinologist once who told me to "think positively and it'll all go away". I wasn't depressed before I saw him, but felt down for at least a month afterwards!
I think the thing is I tend to look well. I've got to the point now that if anyone asks me how I am, I say "I'm fine" or "I'm very well, thanks", despite the fact that I feel totally spaced out and dizzy - they can't see it.
I always get the 'depression' diagnosis. I hate it. Especially when I go home and my family say that I'm not depressed. It's really tough to make a doctor do tests on you when you feel utterly exhausted. And sometimes I think, well I'm living with it, I can still do most of the things I want to do, so why bother? But I have to admit the dizziness and tripping over/into things is worrying me enough to go back to the docs.
I think the thing is I tend to look well. I've got to the point now that if anyone asks me how I am, I say "I'm fine" or "I'm very well, thanks", despite the fact that I feel totally spaced out and dizzy - they can't see it.
I always get the 'depression' diagnosis. I hate it. Especially when I go home and my family say that I'm not depressed. It's really tough to make a doctor do tests on you when you feel utterly exhausted. And sometimes I think, well I'm living with it, I can still do most of the things I want to do, so why bother? But I have to admit the dizziness and tripping over/into things is worrying me enough to go back to the docs.
kiya
04-28-2008, 01:26 PM
Just an update for those of you interested...
I saw a new doctor today and I have to say he was excellent. Usually they sit in front of a computer, tapping away, not really taking much notice. But this one sat down, facing me and asked me to tell him all about what was wrong. He checked loads of stuff including blood pressure, my eyes, some weird test for double vision etc. etc. He wasn't satisfied with the diagnosis of chronic fatigue syndrome I received a few years ago - he didn't think all my symptoms fit. Most wonderfully of all, the word "depression" didn't even pass his lips.
Upshot is I've been referred to a balance/dizziness clinic at my local hospital. He reckons that this new symptom is a bit worrying and that there's more to what's going on with me than the fatigue alone causing everything.
I was so nervous before going in. I can't believe someone is finally actually interested in helping me.
I saw a new doctor today and I have to say he was excellent. Usually they sit in front of a computer, tapping away, not really taking much notice. But this one sat down, facing me and asked me to tell him all about what was wrong. He checked loads of stuff including blood pressure, my eyes, some weird test for double vision etc. etc. He wasn't satisfied with the diagnosis of chronic fatigue syndrome I received a few years ago - he didn't think all my symptoms fit. Most wonderfully of all, the word "depression" didn't even pass his lips.
Upshot is I've been referred to a balance/dizziness clinic at my local hospital. He reckons that this new symptom is a bit worrying and that there's more to what's going on with me than the fatigue alone causing everything.
I was so nervous before going in. I can't believe someone is finally actually interested in helping me.
MSJayhawk
04-28-2008, 01:53 PM
Good for you! Depression all too often accompanies MS. The doctor once asked me if I was depressed. I said I was depressed because the testing was taking too long and was too slow! LOL, keep up the proactive attack and stay positive. It is indeed a blessing to meet with doctors who truly care and have a terrific bedside manner.
Nenu
04-28-2008, 02:30 PM
Finding a good doctor is rare, glad to hear you were able to get the help you were looking for :)
mary63
04-29-2008, 07:28 AM
Thats awesome that you have a doctor who is taking you seriously.
I said to my doctor recently ( who is very caring) that people with anxiety can get sick too...!! just in case he forgot....I know he thinks my tingling etc is anxiety despite the neuro saying it isn't anxiety related.
Hope your trip to the clinic is helpful..:)
I said to my doctor recently ( who is very caring) that people with anxiety can get sick too...!! just in case he forgot....I know he thinks my tingling etc is anxiety despite the neuro saying it isn't anxiety related.
Hope your trip to the clinic is helpful..:)
kiya
04-30-2008, 05:01 AM
Thanks! I'm so relieved to find a doctor who is proactive on my behalf. It can be a struggle being proactive when you keep hitting a wall of medical opinion that says you must be mentally ill because test results keep coming back normal.
I'll post an update after my trip to the clinic at the end of next month.
I'll post an update after my trip to the clinic at the end of next month.
Beccapooh
04-30-2008, 02:42 PM
Wow, you and I are twins! I've been ill for about four years, too. I have all of your symptoms, plus a few more of my own. LOL.
I've been to countless Neuro's, as I was told that "the lion's share of my symptoms were Neruologiically based." I was DX and then UN-DX with Myasthensia Gravis. Although, the treatment helped me and in my opinion saved my life. Nonetheless, I was told, "no you don't have it, it's rare." Okay.....so I have MRI's done all the way back from 2002, because I've had weird symptoms since way before then even, but, they had started to become bothersome and scary. I have seven lesions on my brain. My Mother has MS and it took her 20 years to get DX with it. So, I thought, "Aha! We've found it!!" The lesions are in the 'right place' to be MS (perventricular lesions) but, again, was told, "you don't have MS...you only have 7 lesions and you need 9 to have MS." OKKKAAAAYYY.....They also have been pretty much the same since 2002, but, my Mother's lesions haven't worsened in years and yet, she's been DX and treated. So, what's the deal?? I think my problem is that I waited to long and allowed it to run it's course and do most of the damamger PRIOR to getting my first MRI.
According to my reports from my MRI's (seven of them) I've more than likely had Acute Dissmentated Encephalomyeltis. However, after studying up on that, I've learned that most folks with that, end up with NO lesions on their brain, after they've 'healed' from the ADEM. Yet, I still have my lesions, all these years later!!
At any, rate, you should for sure have an MRI and also have your B-12 checked. Lo and behold, I also have Pernicious Anemia. I actually have what they call Sub Acute Combined Degeneration of the Spinal Cord, secondary to Pernciious Anemia. Basically, I can't process B-12 properly and you need B-12 for all of your nerve conductions. It's a cheap and easy test. It's also easy to treat. I just give myself B-12 shots a couple of times a week. No problem.
Although, my docs thought that that would 'cure' me and alas, I'm still a mess. Blurred vision, can't swallow, etc. My Mother swears that I have MS and I know that I do, but, I can't find a single doctor to listen to me and treat me.
Good luck on your journey!!
Rebecca
I've been to countless Neuro's, as I was told that "the lion's share of my symptoms were Neruologiically based." I was DX and then UN-DX with Myasthensia Gravis. Although, the treatment helped me and in my opinion saved my life. Nonetheless, I was told, "no you don't have it, it's rare." Okay.....so I have MRI's done all the way back from 2002, because I've had weird symptoms since way before then even, but, they had started to become bothersome and scary. I have seven lesions on my brain. My Mother has MS and it took her 20 years to get DX with it. So, I thought, "Aha! We've found it!!" The lesions are in the 'right place' to be MS (perventricular lesions) but, again, was told, "you don't have MS...you only have 7 lesions and you need 9 to have MS." OKKKAAAAYYY.....They also have been pretty much the same since 2002, but, my Mother's lesions haven't worsened in years and yet, she's been DX and treated. So, what's the deal?? I think my problem is that I waited to long and allowed it to run it's course and do most of the damamger PRIOR to getting my first MRI.
According to my reports from my MRI's (seven of them) I've more than likely had Acute Dissmentated Encephalomyeltis. However, after studying up on that, I've learned that most folks with that, end up with NO lesions on their brain, after they've 'healed' from the ADEM. Yet, I still have my lesions, all these years later!!
At any, rate, you should for sure have an MRI and also have your B-12 checked. Lo and behold, I also have Pernicious Anemia. I actually have what they call Sub Acute Combined Degeneration of the Spinal Cord, secondary to Pernciious Anemia. Basically, I can't process B-12 properly and you need B-12 for all of your nerve conductions. It's a cheap and easy test. It's also easy to treat. I just give myself B-12 shots a couple of times a week. No problem.
Although, my docs thought that that would 'cure' me and alas, I'm still a mess. Blurred vision, can't swallow, etc. My Mother swears that I have MS and I know that I do, but, I can't find a single doctor to listen to me and treat me.
Good luck on your journey!!
Rebecca
Nenu
04-30-2008, 03:44 PM
Rebecca that's horrible :( Have you been able to get to the lumbar puncture phase? From what I'm reading it doesn't sound like it. I'd be pushing. 7 lesions and you need 9? That's ridiculous. Nikki will tell you the number of lesions means nothing.
Beccapooh
04-30-2008, 04:45 PM
Yes, I did have an LP, BUT
During that process (which took 3 hours, even being guided by that X-ray machine thing...), they found that I had something "on my spine". The doctor performing the test said that "he'd never felt anything like it before." I was told to tell me GP that something wasn't right with my spine. I got a CT done, of my lumbar spine only, and lo and behold I was told that I have severe degenerative Arthritis and what's called a Subchondral Cyst on my spine. I honestly believe that the fluid that they collected from 'my spine', was actually fluid from INSIDE this cyst. It took three hours because they couldn't ever seem to get INTO the spinal area. The fluid NEVER dripped out, it was finally 'suctioned' out with some weird needle/cathader (spelling??) thing. So, needless to say, I was told that there was no protein or bands found in the fluid, so I'm fine. No MS.
I just emailed my GP and asked him to have a FULL MRI of my spine done. I mean, I can't believe that he ever ordered one of just my Lumbar spine to begin with. Don't you want to see if I have spinal lesions, too? Don't those count towards an MS DX?
What kills me is that my Mom lives in the same city that I do and has been DX with MS for years. She hasn't had any new lesions in over a decade and never had a spinal tap done. She was just told, "Oh, you've got white matter lesions on your brain, in the right places...You've got MS. Here's some drugs to help you get through the day." Wow, how nice would that be?? (I mean, I know it's not NICE per say, but, you know what I mean...)
So, are you telling me that folks have been DX with MS WITHOUT having to have NINE lesions? OMG, I'm so angry right now, I can't even see straight. I have EVERY single MS symptom. Even the most obscure and rare ones. I've been to 9 different types of doctors and told that I'm crazy, over weight, depressed, suffering from anxiety attacks and that I need to "lower the stress in my life". I've been dismissed at every turn. I've already seen three Neuro's, but, they were trying to work me up for Myasthenia Gravis, because that's what they thought I had. I couldn't walk, talk or swallow my own saliva, no less food or water.
I'm going to scream!!!!!!!!!!!!!!!!!!!!!!!
Bec
During that process (which took 3 hours, even being guided by that X-ray machine thing...), they found that I had something "on my spine". The doctor performing the test said that "he'd never felt anything like it before." I was told to tell me GP that something wasn't right with my spine. I got a CT done, of my lumbar spine only, and lo and behold I was told that I have severe degenerative Arthritis and what's called a Subchondral Cyst on my spine. I honestly believe that the fluid that they collected from 'my spine', was actually fluid from INSIDE this cyst. It took three hours because they couldn't ever seem to get INTO the spinal area. The fluid NEVER dripped out, it was finally 'suctioned' out with some weird needle/cathader (spelling??) thing. So, needless to say, I was told that there was no protein or bands found in the fluid, so I'm fine. No MS.
I just emailed my GP and asked him to have a FULL MRI of my spine done. I mean, I can't believe that he ever ordered one of just my Lumbar spine to begin with. Don't you want to see if I have spinal lesions, too? Don't those count towards an MS DX?
What kills me is that my Mom lives in the same city that I do and has been DX with MS for years. She hasn't had any new lesions in over a decade and never had a spinal tap done. She was just told, "Oh, you've got white matter lesions on your brain, in the right places...You've got MS. Here's some drugs to help you get through the day." Wow, how nice would that be?? (I mean, I know it's not NICE per say, but, you know what I mean...)
So, are you telling me that folks have been DX with MS WITHOUT having to have NINE lesions? OMG, I'm so angry right now, I can't even see straight. I have EVERY single MS symptom. Even the most obscure and rare ones. I've been to 9 different types of doctors and told that I'm crazy, over weight, depressed, suffering from anxiety attacks and that I need to "lower the stress in my life". I've been dismissed at every turn. I've already seen three Neuro's, but, they were trying to work me up for Myasthenia Gravis, because that's what they thought I had. I couldn't walk, talk or swallow my own saliva, no less food or water.
I'm going to scream!!!!!!!!!!!!!!!!!!!!!!!
Bec
Nenu
04-30-2008, 06:24 PM
My understanding of being dx'ed with MS is they look for the placement of the lesions on the MRI, versus the number you have. I'm not sure how many lesions appeared on mine, but they were in the right places to merit the evoked testing and LP.
On the other hand, I know of folks who post here that can tell you their MRI was not positive for MS, yet they fit the McDonald criteria (which the doctors you saw should be referring to when dealing with a potential case of MS).
I tested positive on the MRI, evoked and LP. Plus I fit the McDonald criteria. My blood work ruled out the other potential deficiencies, autoimmune etc.
I'm sure you'll get a few responding to your concerns hun, who can better explain it all. I'm also new to all of this, so I'm learning as I go along right now.
Trust your gut feeling. Your mother has MS, and you have symptoms, plus lesions showing on MRI. I'd push it till you're blue in the face to get satisfactory answers, because it seems you aren't right now :(
On the other hand, I know of folks who post here that can tell you their MRI was not positive for MS, yet they fit the McDonald criteria (which the doctors you saw should be referring to when dealing with a potential case of MS).
I tested positive on the MRI, evoked and LP. Plus I fit the McDonald criteria. My blood work ruled out the other potential deficiencies, autoimmune etc.
I'm sure you'll get a few responding to your concerns hun, who can better explain it all. I'm also new to all of this, so I'm learning as I go along right now.
Trust your gut feeling. Your mother has MS, and you have symptoms, plus lesions showing on MRI. I'd push it till you're blue in the face to get satisfactory answers, because it seems you aren't right now :(
Beccapooh
04-30-2008, 06:26 PM
What's the McDonald criteria? I have no idea how to even go about looking that up?
I think I'm going to post my MRI report and see what y'all think. As I've been reading up in the differences between ADEM and MS the one thing that keeps popping up is that when the lesions are in the periventrical (spelling?) areas, it's more indicative of MS. This is where my lesions are, yet, I'm still being told that I 'couldn't possibly have MS'. GGGRRRRRRRRR!!!!!!!!!
Bec
I think I'm going to post my MRI report and see what y'all think. As I've been reading up in the differences between ADEM and MS the one thing that keeps popping up is that when the lesions are in the periventrical (spelling?) areas, it's more indicative of MS. This is where my lesions are, yet, I'm still being told that I 'couldn't possibly have MS'. GGGRRRRRRRRR!!!!!!!!!
Bec
Nenu
04-30-2008, 07:47 PM
I don't want to give misinformation about the McDonald criteria. I'll let another poster respond regarding it, but it's basically, from my understanding, a check list of things they evaluate during an MS diagnosis.
michandtro
05-01-2008, 11:43 AM
sounds like everyone with ms has a horrible experience getting help. I have too. Please tell me more about your problems swallowing your own saliva. I am having all kinds of swallowing problems. I would appreciate it. I also get stabbing pains, burning sensations and have had a couple tearing pains. Noone talks much about these symptoms, we all need to know there are others with the same or similar problems.
Thank-you
Thank-you
Beccapooh
05-01-2008, 11:50 AM
I'm sorry, were you asking me, about my swallowing issues?
I'd be more than happy to share that information with you, I just want to be clear that you were, indeed, asking me and that you understand that I have NOT been diagnosed with MS.
Bec
I'd be more than happy to share that information with you, I just want to be clear that you were, indeed, asking me and that you understand that I have NOT been diagnosed with MS.
Bec
tbabydj
05-02-2008, 11:18 AM
Your symptoms really do sound like MS. I have all those symptoms too. my best advice to you is to go directly to a Nuerologist. It took two years and many doctor visits to recieve my diagnosis. I could barely walk but they sent me home with some Motrin and told me that nothing was wrong with me until I went to see a nuerologist.
kiya
05-02-2008, 03:37 PM
Wow, you and I are twins! I've been ill for about four years, too. I have all of your symptoms, plus a few more of my own. LOL.
Thanks for your reply Rebecca. Sounds like you've had a real tough time of it. I think on Monday I was just so relieved to find a doctor who really seemed to listen and to actually care about finding out what's wrong. The doctor who diagnosed me with CFS in 2004 always shrugged and said there wasn't anymore she could do! This new doctor said that even if it turns out to be CFS, he'd like me seen by the specialist unit at St Thomas' in London - so whatever it turns out I have, he's being proactive and doing something about it.
tbabydj - was your reply to Rebecca or me? I can't quite work it out!
Thanks for your reply Rebecca. Sounds like you've had a real tough time of it. I think on Monday I was just so relieved to find a doctor who really seemed to listen and to actually care about finding out what's wrong. The doctor who diagnosed me with CFS in 2004 always shrugged and said there wasn't anymore she could do! This new doctor said that even if it turns out to be CFS, he'd like me seen by the specialist unit at St Thomas' in London - so whatever it turns out I have, he's being proactive and doing something about it.
tbabydj - was your reply to Rebecca or me? I can't quite work it out!
kiya
05-28-2008, 09:28 AM
Well I had my appointment with the neuro-otologist. Bizarrely enough, he reckons it's migraine (despite the fact I've had migraine for years and not dizziness) or that the dizziness is completely separate to the other things that I've experienced (including the fatigue). He's advised dietary changes and I have to see him in 3 months. If I'm still getting dizzy, he said he'd prescribe meds for that. It all seems a little vague.
Because he reckons the fatigue isn't anything to do with it, I'm going to go back to my GP to try to get something done about that.
It's all so frustrating.
Because he reckons the fatigue isn't anything to do with it, I'm going to go back to my GP to try to get something done about that.
It's all so frustrating.
kiya
05-29-2008, 04:50 AM
Does anyone have any thoughts? :(
mary63
05-29-2008, 06:54 AM
Sorry Kiya- i don't have any helpful thoughts but feel like screeeeaming outloud for us all- trying to find an answer and it being so difficult!!arrrghhhhhhh...
my neurologist said that even if i do get diagnosed with MS they won't treat me until i have had 2 relapses in 1 year- for heavens sakes!!!! if tingling. weakness, headaches, pain and all the rest isn't enough already....!!
my neurologist said that even if i do get diagnosed with MS they won't treat me until i have had 2 relapses in 1 year- for heavens sakes!!!! if tingling. weakness, headaches, pain and all the rest isn't enough already....!!
Bearygood
05-29-2008, 07:18 AM
Kiya, I just wanted to reconfirm -- you saw a neurologist? You've mentioned some sx that do not seem to be part of migraines. Have you EVER had an MRI? Even with migraines, an MRI is the proper diagnostic tool to look for those type of lesions in the brain.
kiya
05-29-2008, 02:01 PM
I saw a neuro-otologist. It was a dizziness/balance clinic. I've never had an MRI.
I explained my symptoms and how the fatigue has got worse since the dizziness started. He didn't seem to understand the concept of 'continual dizziness', which is what I'm getting, and kept asking about attacks of dizziness... all I could explain were the exacerbations of the dizziness I get from time to time. I mentioned the odd sensation I've been having across the left side of my forehead, but he just said that everyone gets that from time to time. I forgot to mention the pins and needles, so phoned the clinic back to let him know (not that I've heard back or even expected to).
As for the fatigue and the fact that the exhaustion and dizziness combined are making me feel spaced out and dream-like, he just said that the dizziness was part of my migraines and the fatigue was completely separate and probably caused by depersonalization disorder. I checked this out and it's not exactly the same thing as what I'm experiencing. He said that if I don't concentrate on the spaced out feeling it will go away. I said that I'd tried ignoring it for the last 4 years and it's still with me. He said it would have been worse if I hadn't ignored it. :rolleyes:
How can the fatigue not be linked to the dizziness when I've been more tired since the dizziness started????
Mary - no need to apologise! It's just all so frustrating. Thanks for posting.
I explained my symptoms and how the fatigue has got worse since the dizziness started. He didn't seem to understand the concept of 'continual dizziness', which is what I'm getting, and kept asking about attacks of dizziness... all I could explain were the exacerbations of the dizziness I get from time to time. I mentioned the odd sensation I've been having across the left side of my forehead, but he just said that everyone gets that from time to time. I forgot to mention the pins and needles, so phoned the clinic back to let him know (not that I've heard back or even expected to).
As for the fatigue and the fact that the exhaustion and dizziness combined are making me feel spaced out and dream-like, he just said that the dizziness was part of my migraines and the fatigue was completely separate and probably caused by depersonalization disorder. I checked this out and it's not exactly the same thing as what I'm experiencing. He said that if I don't concentrate on the spaced out feeling it will go away. I said that I'd tried ignoring it for the last 4 years and it's still with me. He said it would have been worse if I hadn't ignored it. :rolleyes:
How can the fatigue not be linked to the dizziness when I've been more tired since the dizziness started????
Mary - no need to apologise! It's just all so frustrating. Thanks for posting.
leege57
05-29-2008, 05:10 PM
Does anyone have any thoughts? :(
:confused:11 years ago i had a strange experience, pins needles, migranes,tiredness, tingling etc, slowly it all improved except for pins needles in one hand. Doc said ms attack, co-ordination in fingers returned but not as normal. Clumsy and poor balance, but carry on as normal and know when I need more sleep, it helps to keep me going. Any views please?
Lisa:confused:
:confused:11 years ago i had a strange experience, pins needles, migranes,tiredness, tingling etc, slowly it all improved except for pins needles in one hand. Doc said ms attack, co-ordination in fingers returned but not as normal. Clumsy and poor balance, but carry on as normal and know when I need more sleep, it helps to keep me going. Any views please?
Lisa:confused:
Bearygood
05-29-2008, 05:47 PM
kiya, I didn't even know what a neuro-otologist was -- had to look it up! Honestly, I think you should see a neurologist. FYI, I have a friend who is a neurologist specializing in migraines and for a situation like yours, I am sure she would order an MRI.
Lisa, your call -- I would recommend that you too should see a neurologist if you're interested in pursuing some type of explanation although from what you wrote, it doesn't really seem you are having major problems at this time...?
Lisa, your call -- I would recommend that you too should see a neurologist if you're interested in pursuing some type of explanation although from what you wrote, it doesn't really seem you are having major problems at this time...?
mary63
05-30-2008, 07:22 AM
I saw a neuro-otologist. It was a dizziness/balance clinic. I've never had an MRI.
I explained my symptoms and how the fatigue has got worse since the dizziness started. He didn't seem to understand the concept of 'continual dizziness', which is what I'm getting, and kept asking about attacks of dizziness... all I could explain were the exacerbations of the dizziness I get from time to time. I mentioned the odd sensation I've been having across the left side of my forehead, but he just said that everyone gets that from time to time. I forgot to mention the pins and needles, so phoned the clinic back to let him know (not that I've heard back or even expected to).
As for the fatigue and the fact that the exhaustion and dizziness combined are making me feel spaced out and dream-like, he just said that the dizziness was part of my migraines and the fatigue was completely separate and probably caused by depersonalization disorder. I checked this out and it's not exactly the same thing as what I'm experiencing. He said that if I don't concentrate on the spaced out feeling it will go away. I said that I'd tried ignoring it for the last 4 years and it's still with me. He said it would have been worse if I hadn't ignored it. :rolleyes:
How can the fatigue not be linked to the dizziness when I've been more tired since the dizziness started????
Mary - no need to apologise! It's just all so frustrating. Thanks for posting.
Hi me again- i agree with the others- request an MRI!! - I requested one last nov- still waiting. I don't want to have it and sure don't want to know the result because i know what it is- but feel i have no choice- There doesn't seem to be any other way to get medical people to take all the wierd symptoms seriously!!
I get feelings of depersonalization when i panic and they certainly do not feeling ANYTHING like fatigue or being spaced out. Don't know what medical book he read that in....You must feel so frustrated!
I explained my symptoms and how the fatigue has got worse since the dizziness started. He didn't seem to understand the concept of 'continual dizziness', which is what I'm getting, and kept asking about attacks of dizziness... all I could explain were the exacerbations of the dizziness I get from time to time. I mentioned the odd sensation I've been having across the left side of my forehead, but he just said that everyone gets that from time to time. I forgot to mention the pins and needles, so phoned the clinic back to let him know (not that I've heard back or even expected to).
As for the fatigue and the fact that the exhaustion and dizziness combined are making me feel spaced out and dream-like, he just said that the dizziness was part of my migraines and the fatigue was completely separate and probably caused by depersonalization disorder. I checked this out and it's not exactly the same thing as what I'm experiencing. He said that if I don't concentrate on the spaced out feeling it will go away. I said that I'd tried ignoring it for the last 4 years and it's still with me. He said it would have been worse if I hadn't ignored it. :rolleyes:
How can the fatigue not be linked to the dizziness when I've been more tired since the dizziness started????
Mary - no need to apologise! It's just all so frustrating. Thanks for posting.
Hi me again- i agree with the others- request an MRI!! - I requested one last nov- still waiting. I don't want to have it and sure don't want to know the result because i know what it is- but feel i have no choice- There doesn't seem to be any other way to get medical people to take all the wierd symptoms seriously!!
I get feelings of depersonalization when i panic and they certainly do not feeling ANYTHING like fatigue or being spaced out. Don't know what medical book he read that in....You must feel so frustrated!
kiya
05-30-2008, 09:22 AM
Yes, it's all extremely frustrating! Although I've learnt to take what specialists in one area say on subjects in another discipline with a pinch of salt. I saw a gynae once who told me that Raynalds syndrome was more common in men than women (when it's the other way around).
On top of everything else I have exams next week (I'm studying to be a radiotherapist). This morning I felt awful, so I phoned my GP and went to see her. She thought migraine associated vertigo was an odd diagnosis given my symptoms, but said we ought to wait for the consultant's letter etc.
However, I've been given some prochlorperazine for the dizziness for the time being, as it helped in the past when I had labyrinthitis. She even asked if I felt up to taking my exams. I'm going to take them however I feel on Monday. There's always an option to retake if necessary. My health's more important, so I'll just go along, do my best and then rest lots when they're over with!
Bearygood - I'm considering asking for an MRI straight out after my exams are over.
Back to revision...
On top of everything else I have exams next week (I'm studying to be a radiotherapist). This morning I felt awful, so I phoned my GP and went to see her. She thought migraine associated vertigo was an odd diagnosis given my symptoms, but said we ought to wait for the consultant's letter etc.
However, I've been given some prochlorperazine for the dizziness for the time being, as it helped in the past when I had labyrinthitis. She even asked if I felt up to taking my exams. I'm going to take them however I feel on Monday. There's always an option to retake if necessary. My health's more important, so I'll just go along, do my best and then rest lots when they're over with!
Bearygood - I'm considering asking for an MRI straight out after my exams are over.
Back to revision...
mary63
06-01-2008, 06:32 PM
Yes, it's all extremely frustrating! Although I've learnt to take what specialists in one area say on subjects in another discipline with a pinch of salt. I saw a gynae once who told me that Raynalds syndrome was more common in men than women (when it's the other way around).
On top of everything else I have exams next week (I'm studying to be a radiotherapist). This morning I felt awful, so I phoned my GP and went to see her. She thought migraine associated vertigo was an odd diagnosis given my symptoms, but said we ought to wait for the consultant's letter etc.
However, I've been given some prochlorperazine for the dizziness for the time being, as it helped in the past when I had labyrinthitis. She even asked if I felt up to taking my exams. I'm going to take them however I feel on Monday. There's always an option to retake if necessary. My health's more important, so I'll just go along, do my best and then rest lots when they're over with!
Bearygood - I'm considering asking for an MRI straight out after my exams are over.
Back to revision...
Yes good for you! hope the exam goes ok.... i am the same- just want to keep doing the stuff that i would have done anyway- despite crappy symptoms!!! seems worse to stay home. Is the medication working for your dizziness?
On top of everything else I have exams next week (I'm studying to be a radiotherapist). This morning I felt awful, so I phoned my GP and went to see her. She thought migraine associated vertigo was an odd diagnosis given my symptoms, but said we ought to wait for the consultant's letter etc.
However, I've been given some prochlorperazine for the dizziness for the time being, as it helped in the past when I had labyrinthitis. She even asked if I felt up to taking my exams. I'm going to take them however I feel on Monday. There's always an option to retake if necessary. My health's more important, so I'll just go along, do my best and then rest lots when they're over with!
Bearygood - I'm considering asking for an MRI straight out after my exams are over.
Back to revision...
Yes good for you! hope the exam goes ok.... i am the same- just want to keep doing the stuff that i would have done anyway- despite crappy symptoms!!! seems worse to stay home. Is the medication working for your dizziness?
kiya
06-02-2008, 03:45 PM
Not really! I didn't take one this morning before my exam because they've been making me really sleepy - given a choice between feeling moderately alert and dizzy, and feeling comatosed and not dizzy, I chose the former!! I did take one at lunchtime, but still had two dizzy spells on the way home (both whilst standing, where the ground felt like it was falling away from me).
Anyhow, exam went well despite all other problems and I think I've passed. Day off tomorrow to recuperate and then another exam on Wednesday. Ack! Looking forward to the weekend.
You're right though, Mary, it does seem worse to stay at home. I'm constantly trying to keep active. I feel that if I stop I just won't start again. However, I've had such a mad few weeks that I'm going to the docs next Monday and am going to see if I can be signed off work for a week or so. I desperately need some rest.
Anyhow, exam went well despite all other problems and I think I've passed. Day off tomorrow to recuperate and then another exam on Wednesday. Ack! Looking forward to the weekend.
You're right though, Mary, it does seem worse to stay at home. I'm constantly trying to keep active. I feel that if I stop I just won't start again. However, I've had such a mad few weeks that I'm going to the docs next Monday and am going to see if I can be signed off work for a week or so. I desperately need some rest.