searchout
12-04-2008, 04:13 PM
HI, I will try and give you guys a brief description of whats been going on...
About 10 years ago had first attack:
I had strong numbness in the base of my spine and lower back
This wore off but never got totally better.
Over the years I have had really bad fatigue, problems with numbness, visual problems...
I now have constant tingling in the bottom of my back which gets worse when I move my nexk, plus I have had some really bad attacks of vertigo...so bad that I couldn't move or see straight, the bad attacks seem to wear off but I now have dizziness a lot.
I have had lots of MRI scans, the last one I had showed 2 small white spots...all my other tests came back normal (i.e lumber punch, blood tests) etc
My dr is saying it is definitely not MS but I am not so sure, my last clinical examination showed a slight problem with my reflexes in my bad leg but when I saw him today that has seemed to resolved.
Deep down I feel like I have MS and I want to start some treatment as I feel like it is getting worse but he has reassured me so many times it is not MS, he reckons there would be more signs by now after 10 years...what do you all think?
About 10 years ago had first attack:
I had strong numbness in the base of my spine and lower back
This wore off but never got totally better.
Over the years I have had really bad fatigue, problems with numbness, visual problems...
I now have constant tingling in the bottom of my back which gets worse when I move my nexk, plus I have had some really bad attacks of vertigo...so bad that I couldn't move or see straight, the bad attacks seem to wear off but I now have dizziness a lot.
I have had lots of MRI scans, the last one I had showed 2 small white spots...all my other tests came back normal (i.e lumber punch, blood tests) etc
My dr is saying it is definitely not MS but I am not so sure, my last clinical examination showed a slight problem with my reflexes in my bad leg but when I saw him today that has seemed to resolved.
Deep down I feel like I have MS and I want to start some treatment as I feel like it is getting worse but he has reassured me so many times it is not MS, he reckons there would be more signs by now after 10 years...what do you all think?
Sponsor
MSJayhawk
12-04-2008, 04:40 PM
I would think that a neurologist would give you a definitive diagnosis. MS proceeds at different rates depending on the person. I would seek out a doctor who might better assist you in a planned offensive. When your doctor told you it was not MS, then the doctor should have given you his reasons or at least what he believed you might have. Not knowing is the most difficult part of our fight- at least for me it was. Once I knew I had MS, my problems continued, but I knew to what to attribute most of them.
Check with the MS Society in the UK. I visited their website before and they seemed fairly well organized.
Check with the MS Society in the UK. I visited their website before and they seemed fairly well organized.
libybil
12-04-2008, 09:04 PM
:) welcome,
sorry to hear of the difficuty with getting it diagnosed, whatever it is! i totallly agree with jayhawk, that you really do need a good neurologist that knows ms! that can be hard to find, since i saw one who mainly dealt with depression, another who mainly dealt with sleep problems! who knew there's that much difference in neurology drs?? anyway, best of luck with this whole thing, and remember, we're all right here for you!
LibbY!
sorry to hear of the difficuty with getting it diagnosed, whatever it is! i totallly agree with jayhawk, that you really do need a good neurologist that knows ms! that can be hard to find, since i saw one who mainly dealt with depression, another who mainly dealt with sleep problems! who knew there's that much difference in neurology drs?? anyway, best of luck with this whole thing, and remember, we're all right here for you!
LibbY!
searchout
12-05-2008, 07:02 AM
Thanks Lib, Its like I want to get a diagnosis which means things have to get worse but I don't want a diagnosis either because that means things have got worse.
I really do appreciate the support, and I am glad I have found these boards
I really do appreciate the support, and I am glad I have found these boards
angeles0209
12-05-2008, 10:22 AM
Hello
Take one day at a time. And don't worry about the what IF'S. Hope it is not MS. But, then what is it that you have. It took some years for me to be diagnosed. Symptoms started in 1999 and gradually got worst. Saw about 6 doctors and E.R visits before I was diagnosed with MS in late 2002 and I had no idea what the heck MS was. Now in Dec 2008 I feel that I am still in denial. My illness has cost me my marriage, husband left back in feb 2007. I am sitting in my foreclosure home waiting to be evicted, just lost my job in October of this year. And waiting to hear about state disability. Stress in my life is overwhelming but I try to keep calm and yes I cry every now and then. I am sick of being sick. My advise to you is you know your body more than any doctor or specialist out there. And do what you have to do to try to make yourself feel better!
Angeles
Take one day at a time. And don't worry about the what IF'S. Hope it is not MS. But, then what is it that you have. It took some years for me to be diagnosed. Symptoms started in 1999 and gradually got worst. Saw about 6 doctors and E.R visits before I was diagnosed with MS in late 2002 and I had no idea what the heck MS was. Now in Dec 2008 I feel that I am still in denial. My illness has cost me my marriage, husband left back in feb 2007. I am sitting in my foreclosure home waiting to be evicted, just lost my job in October of this year. And waiting to hear about state disability. Stress in my life is overwhelming but I try to keep calm and yes I cry every now and then. I am sick of being sick. My advise to you is you know your body more than any doctor or specialist out there. And do what you have to do to try to make yourself feel better!
Angeles
searchout
12-05-2008, 12:53 PM
I am really sorry to hear about your terrible position.
When you went to your dr in 99 did they do the MRI's/lumber punches etc? If so what did they show? In 2002 were you diagnosed with relapsing/remitting ms? If you don't mind me asking how old are you? Do you have any family members who can help you out? I hope you do manage to get state disablity to ease the burden.
I am so sick of being sick too, I hate the numbness I feel, and I really hope they get a move on with trying to find things to reverse damage...I have to believe it will happen....
When you went to your dr in 99 did they do the MRI's/lumber punches etc? If so what did they show? In 2002 were you diagnosed with relapsing/remitting ms? If you don't mind me asking how old are you? Do you have any family members who can help you out? I hope you do manage to get state disablity to ease the burden.
I am so sick of being sick too, I hate the numbness I feel, and I really hope they get a move on with trying to find things to reverse damage...I have to believe it will happen....
angeles0209
12-05-2008, 11:42 PM
Hello again
In 99 the doctor's did nothing -that year I saw about 8 doctors. I was a healthy person. About May of 2002 I saw a new doctor that my coworkers kept referring me to see. I used to work in the Medical field -screening cancer patients. Very stressful job. I loved my job but came to hate it when I had to resign. I was 40years old in 2002When I was finally diagnosed with multiple sclerosis. My numbness and tingling started in sept 2002 and just got worst feet/legs/thighs. That's when I had MRI/lumbar punch. Lumbar punch was normal and the lesions that were found are in my brain four of them. They are very small but boy they cause alot of pain and damage. In my situation the symptoms have never gone away. This is slowly progressing. I have never been symptom free. Pins and needless, pain,numbness, tingling are with me 24/7 I am able to walk and move around on a daily basis. It's only when I get an attack that I have to be transported to the hospital because of the pain and partial paralized. I will only go to the hospital if i am not able to move ***Hate the hospital*** My most recent attack in sept 08 left me in a wheelchair-walker-cain. That's the routine until i am able to walk on my own again. I have a daughter that is 26, son that is 25 and a 17year old. They all live with me.
Stay positive. it's hard. But, being sad and worrying does not help us out.
How old are you? any family?
In 99 the doctor's did nothing -that year I saw about 8 doctors. I was a healthy person. About May of 2002 I saw a new doctor that my coworkers kept referring me to see. I used to work in the Medical field -screening cancer patients. Very stressful job. I loved my job but came to hate it when I had to resign. I was 40years old in 2002When I was finally diagnosed with multiple sclerosis. My numbness and tingling started in sept 2002 and just got worst feet/legs/thighs. That's when I had MRI/lumbar punch. Lumbar punch was normal and the lesions that were found are in my brain four of them. They are very small but boy they cause alot of pain and damage. In my situation the symptoms have never gone away. This is slowly progressing. I have never been symptom free. Pins and needless, pain,numbness, tingling are with me 24/7 I am able to walk and move around on a daily basis. It's only when I get an attack that I have to be transported to the hospital because of the pain and partial paralized. I will only go to the hospital if i am not able to move ***Hate the hospital*** My most recent attack in sept 08 left me in a wheelchair-walker-cain. That's the routine until i am able to walk on my own again. I have a daughter that is 26, son that is 25 and a 17year old. They all live with me.
Stay positive. it's hard. But, being sad and worrying does not help us out.
How old are you? any family?
searchout
12-08-2008, 08:51 AM
Hi Angel,
I am 31 and have a fiance My main symptoms are numbness and vertigo/dizziness.
When I first got ill I had an attack of numbness in one area and I seem to have more and more areas being affected.
My illness (whatever it is) does also feel like it is progressing, I have had weakness in my hands and left leg but they resolved pretty quickly... How do the dr's deal with your numbness? Are you on any meds? and did your sensory tests come back normal?
Thanks
I am 31 and have a fiance My main symptoms are numbness and vertigo/dizziness.
When I first got ill I had an attack of numbness in one area and I seem to have more and more areas being affected.
My illness (whatever it is) does also feel like it is progressing, I have had weakness in my hands and left leg but they resolved pretty quickly... How do the dr's deal with your numbness? Are you on any meds? and did your sensory tests come back normal?
Thanks
angeles0209
12-08-2008, 07:18 PM
How many doc opinions have you seeked? The first neurologist that I saw back in 2002 said he did not think it was MS. The second doc said yes this was MS. I have been seeing him even though I don't feel the doctors really know what or how to treat MS. When I was transported to the emergency room in sept 08 the doctor that saw me actually asked ME !OK what do we do for you when this happens????? I was not shocked but could not believe he did not know what to do when a person with MS came through the emergency room. The nerve pain is like a fire cracker being set off in a certain area of your body. When I woke up that september day I new immediately that I was going to the hospital. The spasm was in the back of my head/neck/shoulders/arms/hands and upper back with chest pain. My voice was froggy my ears both plugged/ringing. My tongue was numb and painful worst than usual. My tongue became numb/painful back in 2004 when that happened I thought maybe I had burned my mouth with my morning coffee. On my way home from work it dawned on me! My tongue is numb/tingling painful oh my god. Another MS symptom! I cried all the way home. It is so different from person to person. If I pinch the back of my neck -which is always numb/tingling I can feel it. But, like you said it does not feel the same as if i pinch a area that is not numb/tingling. I can tell you that most of my body is numb/tingling/pins/needles. It really helps being able to express what one feels. Thanks for your input -hope to hear back from you,
Angeles
Angeles
Bearygood
12-08-2008, 07:44 PM
As you've no doubt surmised from these posts, MS can be difficult to dx and not all neurologists are created equal! Your sx DO sound suspicious for MS -- it doesn't mean they ARE MS but I find it unsettling that your doctor is so dismissive. And sometimes when MS is suspected, there is not enough medical "evidence" for a dx. Sometimes it takes a long time for lesions to show up.
Did they tell you what those "white spots" were? MS lesions have certain characteristics like shape and location but it is still possible for lesions to present atypically. If you don't have a copy of the radiologist's report I'd recommend you getting a copy and any copies of any future reports as well.
It might be helpful to go to the links provided in the post toward the top of the page (The Differential Dx of MS). It's a good overview of many MS mimics and what it takes to get an MS dx.
Good luck to you!
Did they tell you what those "white spots" were? MS lesions have certain characteristics like shape and location but it is still possible for lesions to present atypically. If you don't have a copy of the radiologist's report I'd recommend you getting a copy and any copies of any future reports as well.
It might be helpful to go to the links provided in the post toward the top of the page (The Differential Dx of MS). It's a good overview of many MS mimics and what it takes to get an MS dx.
Good luck to you!
searchout
12-09-2008, 06:34 AM
Hi Angeles and Beary,
Thanks for your replies.
I have seen about 3 dr's over the years (neurologists) but my MRI has always been totally clean before these 2 spots. (My current neurologist says that the spots are not in the place you would expect for MS and they are very small, he reckons with the advancement of technology thats why they did not show up before)
Its weird with the numbness as I never had experienced pins and needles it was a blanket numbness followed by a partial numbness but no pins and needles. At the mom for the first time I am experiencing pins and needles down my spine and that has been with me now for 6 days.
My dr reckons that after 10 years more lesions would have showed up if it was MS but I understand they can come and go. I think they expect the evidence to show up first then the sx to follow or something, I have only Sx and no medical tests that were positive (except the new MRI) On clinical examination my left reflexes once showed up to not be working right and obviously he knows I am numb im areas thanks to his pin-pricking but he has not seem me with dizziness so so far I have passed all the balance tests. (If I was dizzy at the time I wouldn't be able to do them)
I have been checked for every differential diagnosis you can think of...and again all negative!!! I think it might be a case of time will tell, my onlt major worry is this secondary MS stuff, I am worried I will move into that phase if I have to keep waiting to be diagnosed. Does anyone know if you usually are higher on the EDSS list before being diagnosed as secondary? I mean people don't usually go from no disablity to secondary without medical evidence do they? I understand with PPMS there may be no sign before but with SPMS you would have to have some damage show when you went through the RRMS stage no?
Thanks guys for you advice
Thanks for your replies.
I have seen about 3 dr's over the years (neurologists) but my MRI has always been totally clean before these 2 spots. (My current neurologist says that the spots are not in the place you would expect for MS and they are very small, he reckons with the advancement of technology thats why they did not show up before)
Its weird with the numbness as I never had experienced pins and needles it was a blanket numbness followed by a partial numbness but no pins and needles. At the mom for the first time I am experiencing pins and needles down my spine and that has been with me now for 6 days.
My dr reckons that after 10 years more lesions would have showed up if it was MS but I understand they can come and go. I think they expect the evidence to show up first then the sx to follow or something, I have only Sx and no medical tests that were positive (except the new MRI) On clinical examination my left reflexes once showed up to not be working right and obviously he knows I am numb im areas thanks to his pin-pricking but he has not seem me with dizziness so so far I have passed all the balance tests. (If I was dizzy at the time I wouldn't be able to do them)
I have been checked for every differential diagnosis you can think of...and again all negative!!! I think it might be a case of time will tell, my onlt major worry is this secondary MS stuff, I am worried I will move into that phase if I have to keep waiting to be diagnosed. Does anyone know if you usually are higher on the EDSS list before being diagnosed as secondary? I mean people don't usually go from no disablity to secondary without medical evidence do they? I understand with PPMS there may be no sign before but with SPMS you would have to have some damage show when you went through the RRMS stage no?
Thanks guys for you advice
Bearygood
12-09-2008, 11:49 AM
Like I said, it's possible for lesions to show atypically. And I've seen many cases where one doctor might say the lesions are not indicative of MS but another one disagrees. Again, I'm not saying that your doctor is wrong but I would suggest you get a copy of the radiologist's report if you can or at the very least, find out in what region of the brain they're in. (I realize that the way things work over may be different than in the states in terms of accessing your records.)
As for lesions showing up, I've unfortunately seen people who have been symptomatic for more than 10 years and don't show any lesions. Some with more aggressive doctors have been willing to dx based on only clinical findings but that's still pretty unusual -- most doctors go by the McDonald criteria or at least stick pretty close to it. As you said, for some it's a matter of time and sometimes time doesn't seem to provide the evidence needed for a dx. Limbo is not fun -- we've all seen many people in it.
Don't use the word secondary for sx -- they're still just sx! :) The dxes of secondary and primary are usually characterized by periods of steady progression without any relapses. About six months ago, someone I knew who thought she was SPMS (which is a progression of RRMS -- you cannot start out as SPMS) had a relapse after years! She wasn't happy about the relapse but she was happy to learn she was still RRMS after all! Not exactly "congratulations" worthy but you get the point. ;)
One of the other problems with dxing SPMS vs. PPMS is that it is not impossible that someone gets dxed when they've progressed so that a doctor automatically thinks it's PPMS. However, it's not impossible that the patient is really SPMS -- a case like this would mean that when they were in the RRMS stage, the problems were so few and far between that they didn't even think anything of it and maybe didn't even go to a doctor. The most important part of this difference here is that MS drugs are still acceptable for SPMS because it was once RRMS. PPMS is a different story. With that said, I'm not an expert on the EDSS scale but I'd say yes, that those with SPMS would usually score higher. Your statement: "I understand with PPMS there may be no sign before but with SPMS you would have to have some damage show when you went through the RRMS stage no?" is correct -- the only distinction is that there may be no actual sign.
Honestly, the sx you're experiencing now might subside. I'm not even on MS drugs and my tingling actually got progressively better over the course of I'd say about a year. Please don't think that you're automatically going to progress -- the stress is not good and there is just no way of telling. We all just do the best we can. In the meantime, while you're seeking answers (and may have to wait for some!) there are things that you may want to do to be proactive. There is a lot of information out there on supplements and diet and many of us believe that this can help. Inflammation was mentioned on this board recently -- that is one key, to think anti-inflammatory. RRMS and SPMS are in fact characterized by having periods of inflammation, while PPMS is not.
I hope this made sense!
As for lesions showing up, I've unfortunately seen people who have been symptomatic for more than 10 years and don't show any lesions. Some with more aggressive doctors have been willing to dx based on only clinical findings but that's still pretty unusual -- most doctors go by the McDonald criteria or at least stick pretty close to it. As you said, for some it's a matter of time and sometimes time doesn't seem to provide the evidence needed for a dx. Limbo is not fun -- we've all seen many people in it.
Don't use the word secondary for sx -- they're still just sx! :) The dxes of secondary and primary are usually characterized by periods of steady progression without any relapses. About six months ago, someone I knew who thought she was SPMS (which is a progression of RRMS -- you cannot start out as SPMS) had a relapse after years! She wasn't happy about the relapse but she was happy to learn she was still RRMS after all! Not exactly "congratulations" worthy but you get the point. ;)
One of the other problems with dxing SPMS vs. PPMS is that it is not impossible that someone gets dxed when they've progressed so that a doctor automatically thinks it's PPMS. However, it's not impossible that the patient is really SPMS -- a case like this would mean that when they were in the RRMS stage, the problems were so few and far between that they didn't even think anything of it and maybe didn't even go to a doctor. The most important part of this difference here is that MS drugs are still acceptable for SPMS because it was once RRMS. PPMS is a different story. With that said, I'm not an expert on the EDSS scale but I'd say yes, that those with SPMS would usually score higher. Your statement: "I understand with PPMS there may be no sign before but with SPMS you would have to have some damage show when you went through the RRMS stage no?" is correct -- the only distinction is that there may be no actual sign.
Honestly, the sx you're experiencing now might subside. I'm not even on MS drugs and my tingling actually got progressively better over the course of I'd say about a year. Please don't think that you're automatically going to progress -- the stress is not good and there is just no way of telling. We all just do the best we can. In the meantime, while you're seeking answers (and may have to wait for some!) there are things that you may want to do to be proactive. There is a lot of information out there on supplements and diet and many of us believe that this can help. Inflammation was mentioned on this board recently -- that is one key, to think anti-inflammatory. RRMS and SPMS are in fact characterized by having periods of inflammation, while PPMS is not.
I hope this made sense!
searchout
12-09-2008, 03:15 PM
Hi Beary, Thank-you so much for your detailed reply.
I first got ill when I was 17, I am 31 years old now (so although I say I have been ill for 10 years it is more like 13/14 years).
I was initally told I had M.E so I started straight away on changing my diet, taking supplements and generally looking after myself. I tend to do ok when I am being "good" and sticking to everything and there is definately a marked worsening of Sx or attack when I stop the supps etc. I don't eat Wheat or Dairy or tomatoes and eat lots of wholegrain foods i.e brown rice .
I take 3g a day of vitamin C (one that is buffered i.e not pure ascorbic Acid) and a good multi mineral plus a calcium and magnesium supplement..also the herb Licorice root (which helps so much, I kind of use it like a steroid, when I get an attack I take it for a couple of months and it seems to calm it.
I have done lots of other things on and off which have been a real help to my endometriosis of which I am pain free now after many years of terrible pain.
I do wonder if all these things I have done over the years has played a part in whatever I have being relatively mild (in comparison to other MSers).
I just get really disheartened when I don't feel like I have "control" over it, I am one of those people who wants everything to be just right and if something isn't right I will work at it until it is!! Also when I feel well I over do everything so I am trying to learn to live in the middle rather than having the highs and the lows (in business and in life).
I wonder if these sort of conditions do affect "over achievers" the types who are motivated and over work? I know M.E seems to happen to those types of people.
I suppose I will just have to wait for this feeling in my spine to go (its kinda like a tuning fork being dinged on my back) and hopefully take precautions to prevent it coming back!
I really hope that they find something to combat MS and all these terrible conditions...
I first got ill when I was 17, I am 31 years old now (so although I say I have been ill for 10 years it is more like 13/14 years).
I was initally told I had M.E so I started straight away on changing my diet, taking supplements and generally looking after myself. I tend to do ok when I am being "good" and sticking to everything and there is definately a marked worsening of Sx or attack when I stop the supps etc. I don't eat Wheat or Dairy or tomatoes and eat lots of wholegrain foods i.e brown rice .
I take 3g a day of vitamin C (one that is buffered i.e not pure ascorbic Acid) and a good multi mineral plus a calcium and magnesium supplement..also the herb Licorice root (which helps so much, I kind of use it like a steroid, when I get an attack I take it for a couple of months and it seems to calm it.
I have done lots of other things on and off which have been a real help to my endometriosis of which I am pain free now after many years of terrible pain.
I do wonder if all these things I have done over the years has played a part in whatever I have being relatively mild (in comparison to other MSers).
I just get really disheartened when I don't feel like I have "control" over it, I am one of those people who wants everything to be just right and if something isn't right I will work at it until it is!! Also when I feel well I over do everything so I am trying to learn to live in the middle rather than having the highs and the lows (in business and in life).
I wonder if these sort of conditions do affect "over achievers" the types who are motivated and over work? I know M.E seems to happen to those types of people.
I suppose I will just have to wait for this feeling in my spine to go (its kinda like a tuning fork being dinged on my back) and hopefully take precautions to prevent it coming back!
I really hope that they find something to combat MS and all these terrible conditions...