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Vague MS Symptoms?
I've posted a few questions and I have to say all of you are so supportive of not only each other but of "newbies." It's one of those wonderful and positive examples of the internet actually bringing people together in a good way.
I have "suspicious" lesions on my MRI but no diagnoses as of yet. My main symptom is dizziness which started with a sinus infection and I've had issues with weakness in my limbs, feet and hands. I also get a tremor when I'm tired. I'm also highly anxious, just full of anxiety and fear with this whole months-long ordeal.
Anyway, I'm wondering for those of you who are diagnosed or just diagnosed what your symptoms are like? Are they vague where you question whether or not you are feeling them (or your mind playing tricks)? Or are they debilitating and obvious? I sometimes can't put my symptoms into words. For example, sometimes the top of my foot and ankle will get a strange feeling. It's almost like a weakness, the best way for me to describe it is the feeling your foot or hand my get AFTER your foot has fallen asleep from leaning on it and has returned to normal feeling but still feels "strange." Wordy, I know, but its the best I can do.
Sometimes I feel like I have weakness but I'm able to do anything while I have this feeling. I know I'm experiencing a dizzy/groggy feeling, literally for 3 months. Sometimes it gets better, other times worse.
So strange! I guess my main question is can I have vague symptoms or if I have MS will I have no doubt?
Thank you all in advance.
I have "suspicious" lesions on my MRI but no diagnoses as of yet. My main symptom is dizziness which started with a sinus infection and I've had issues with weakness in my limbs, feet and hands. I also get a tremor when I'm tired. I'm also highly anxious, just full of anxiety and fear with this whole months-long ordeal.
Anyway, I'm wondering for those of you who are diagnosed or just diagnosed what your symptoms are like? Are they vague where you question whether or not you are feeling them (or your mind playing tricks)? Or are they debilitating and obvious? I sometimes can't put my symptoms into words. For example, sometimes the top of my foot and ankle will get a strange feeling. It's almost like a weakness, the best way for me to describe it is the feeling your foot or hand my get AFTER your foot has fallen asleep from leaning on it and has returned to normal feeling but still feels "strange." Wordy, I know, but its the best I can do.
Sometimes I feel like I have weakness but I'm able to do anything while I have this feeling. I know I'm experiencing a dizzy/groggy feeling, literally for 3 months. Sometimes it gets better, other times worse.
So strange! I guess my main question is can I have vague symptoms or if I have MS will I have no doubt?
Thank you all in advance.
Sphageddie: You asked how you "keep up the day to day... how do we do it?" Just like that: day by day. I have been doing it for 13 years with no answer and never expect to get one. It took me years to come to that conclusion (that I would never get any answers). Unfortunately I never got any help from a spinal tap because they couldn't get fluid out of me. I hope YOU will get your answers soon, but be prepared that you may never get answers. Good luck!
Nancy
Nancy
I think she meant to not take medication unless they were sure of a disease process. As in everyone shouldn't be just taking MS medications as insurance to prevent it from progressing. She wants to make sure I'm taking it for a reason I guess.
My lesions aren't exactly extensive unless two or three is extensive, which I suppose any lesions which are not supposed to be there is trouble. She said only one almost falls into the standard pattern where lesions usually show up. Although she also mentioned that it can happen any where. I'm just afraid that I may never know or it could be a year before I know. A lengthy and frustrating process and the entire time you have to keep up the day to day...how do we do it?
My lesions aren't exactly extensive unless two or three is extensive, which I suppose any lesions which are not supposed to be there is trouble. She said only one almost falls into the standard pattern where lesions usually show up. Although she also mentioned that it can happen any where. I'm just afraid that I may never know or it could be a year before I know. A lengthy and frustrating process and the entire time you have to keep up the day to day...how do we do it?
“She said the medication is a big lifetime commitment and not something you do ‘just in case.’”
Wow, I have to disagree with that statement. Medication is not a lifetime commitment, you can stop or switch at any time, although I wouldn’t recommend either unless the medication was clearly intolerable or ineffective (either of which could certainly end up being the case for you or anybody else).
I haven’t had a relapse in six years. I hate taking injections. Yet I do it, “just in case” my MS might otherwise progress rapidly. Untreated, MS will progress to some degree, so we might as well fight it with one or more of the many tools we have available. Even with treatment, MS will progress at least negligibly, but we can at least slow it down.
Yes, live your life, but don’t ignore your condition, especially if it's MS. The spinal tap sounds like a good idea, and I hope it brings you and your doctor more clarity.
Wow, I have to disagree with that statement. Medication is not a lifetime commitment, you can stop or switch at any time, although I wouldn’t recommend either unless the medication was clearly intolerable or ineffective (either of which could certainly end up being the case for you or anybody else).
I haven’t had a relapse in six years. I hate taking injections. Yet I do it, “just in case” my MS might otherwise progress rapidly. Untreated, MS will progress to some degree, so we might as well fight it with one or more of the many tools we have available. Even with treatment, MS will progress at least negligibly, but we can at least slow it down.
Yes, live your life, but don’t ignore your condition, especially if it's MS. The spinal tap sounds like a good idea, and I hope it brings you and your doctor more clarity.
I'm in the same boat. I have extensive lesions and have had some strange symptoms. I'm having the lumbar puncture next Tuesday. I want answers quickly as well. I have tremors and sensitivity to heat. Just get super sleepy when I'm too warm. Can't keep my eyes open My legs have collapsed just a few times getting out of bed. leg cramps. My right leg feels weak and some pain now.
Just an update for those who still read or wander the forums like I do.
I've seen my neuro now twice. I've had MRI's of the head re-done and MRI's of the spine done. The head MRI still shows the lesions but the spine's are clear (which is definitely a good sign). She will not commit to saying I do or do not have MS and I doubt she ever will. She says although there are very little symptoms you cannot just say one way or the other. Seems it may be a very long time before I have a definite answer.
She wants to run a spinal tap which she says will give even more clues and evidence towards what she is seeing. Also rerun the MRI's in 6 months to see progress.
I'd be curious to know what you all think of this; She mentioned that even if the spinal tap came back positive she might not think that was enough to start a medication treatment because of the lack of symptoms. She said the medication is a big lifetime commitment and not something you do "just in case."
I'm definitely calmer and more accepting of whatever comes my way now. Since the little stubborn impatient child inside of me who needs an immediate answer (usually in the form of forums and wed searching - yuck!) is calming down. I know this will not be something I will just figure out and I have to be patient....that's hard!
Her best advice was to stop looking for symptoms and to know that if I was going to experience a symptom I would definitely know it. She bluntly stated "Live your life."
I hope many of you out there who commented or read are doing well and finding your own way to be calm in these terrible situations we've found ourselves in. Hope to talk to you soon.
I've seen my neuro now twice. I've had MRI's of the head re-done and MRI's of the spine done. The head MRI still shows the lesions but the spine's are clear (which is definitely a good sign). She will not commit to saying I do or do not have MS and I doubt she ever will. She says although there are very little symptoms you cannot just say one way or the other. Seems it may be a very long time before I have a definite answer.
She wants to run a spinal tap which she says will give even more clues and evidence towards what she is seeing. Also rerun the MRI's in 6 months to see progress.
I'd be curious to know what you all think of this; She mentioned that even if the spinal tap came back positive she might not think that was enough to start a medication treatment because of the lack of symptoms. She said the medication is a big lifetime commitment and not something you do "just in case."
I'm definitely calmer and more accepting of whatever comes my way now. Since the little stubborn impatient child inside of me who needs an immediate answer (usually in the form of forums and wed searching - yuck!) is calming down. I know this will not be something I will just figure out and I have to be patient....that's hard!
Her best advice was to stop looking for symptoms and to know that if I was going to experience a symptom I would definitely know it. She bluntly stated "Live your life."
I hope many of you out there who commented or read are doing well and finding your own way to be calm in these terrible situations we've found ourselves in. Hope to talk to you soon.
Hello everyone,
I woke up one Saturday in April, 1987 with the right side of my face and arm ablaze with tingling - and to this day my face tingling remains (gets worse under stress), with the arm tingling from time to time, however...
Over the years the symptoms always seemed to get worse in the Spring (I live in South Florida but was born in the Northeast US), and...
In the Spring of 2005 my bladder seemed to "act up" one stressful day when I was unable to urinate for about 30 seconds and thank the Lord that did not reoccur, however...
Sometime in the Spring or Summer of 2010 I started getting "dribbling" after urination, and that continued until the Spring of 2011 when I began to feel ill over a period of 2 weeks, and after a blood test was admitted to the hospital when it was found that I had a bladder was retaining 3,000 cc's of urine!!!
They drained it and gave me a foley - which I have one year later because it was determined that I have neurogenic bladder and a non-working spintcher muscle...
The urologist advised me to have a neurological workup, and have been to 3 neurologists, but as you know we have to feel comfortable with our doctor and it seems No. 3 is working out, but like the others he wanted me to have a closed MRI to rule out MS...
Fortunately the hospital that he's a part of has a "nice" 1.5 closed MRI (that looks more like a CAT scan machine) and last evening finally - after 9 months of struggle (I really have an issued with confined spaces) - started having the scans...
I did not speak to Neurologist No. 1 about MS, however Neurologist No. 2, who is well-liked by the MS community, said he didn't think that was the cause, however, Neurologist No. 3 asked me a few key questions and found, after telling him that I was 31 when my tingling began (the same age as the MS average), that the "annual" tingling I described is a recurring symptom...
During the exam, he said my arm and leg strength is excellent (with the exception of my left arm and right foot that both have a reduction in nerve sensation), however...
I'm a long-distance bicyclist of many years (a "touring club cyclist"), and developed very strong foot, leg and arm muscles, so this might be a form of "space shuttle" syndrome where the original developed strength is accomodating for any weakness (this is strictly my guess but as they say the patient knows their own body)...
So, I'm unsure what's going on, though the current Neurologist is associated with a large research hospital that recently opened their own MS center, so we'll see what the MRI finds...
Please say a prayer for me, because my poor bladder is really struggling after 12 months with a foley catheter (it's changed every 3 weeks but my insides are wearing raw)...
Thanks,
Frank
Cooper City FL
I woke up one Saturday in April, 1987 with the right side of my face and arm ablaze with tingling - and to this day my face tingling remains (gets worse under stress), with the arm tingling from time to time, however...
Over the years the symptoms always seemed to get worse in the Spring (I live in South Florida but was born in the Northeast US), and...
In the Spring of 2005 my bladder seemed to "act up" one stressful day when I was unable to urinate for about 30 seconds and thank the Lord that did not reoccur, however...
Sometime in the Spring or Summer of 2010 I started getting "dribbling" after urination, and that continued until the Spring of 2011 when I began to feel ill over a period of 2 weeks, and after a blood test was admitted to the hospital when it was found that I had a bladder was retaining 3,000 cc's of urine!!!
They drained it and gave me a foley - which I have one year later because it was determined that I have neurogenic bladder and a non-working spintcher muscle...
The urologist advised me to have a neurological workup, and have been to 3 neurologists, but as you know we have to feel comfortable with our doctor and it seems No. 3 is working out, but like the others he wanted me to have a closed MRI to rule out MS...
Fortunately the hospital that he's a part of has a "nice" 1.5 closed MRI (that looks more like a CAT scan machine) and last evening finally - after 9 months of struggle (I really have an issued with confined spaces) - started having the scans...
I did not speak to Neurologist No. 1 about MS, however Neurologist No. 2, who is well-liked by the MS community, said he didn't think that was the cause, however, Neurologist No. 3 asked me a few key questions and found, after telling him that I was 31 when my tingling began (the same age as the MS average), that the "annual" tingling I described is a recurring symptom...
During the exam, he said my arm and leg strength is excellent (with the exception of my left arm and right foot that both have a reduction in nerve sensation), however...
I'm a long-distance bicyclist of many years (a "touring club cyclist"), and developed very strong foot, leg and arm muscles, so this might be a form of "space shuttle" syndrome where the original developed strength is accomodating for any weakness (this is strictly my guess but as they say the patient knows their own body)...
So, I'm unsure what's going on, though the current Neurologist is associated with a large research hospital that recently opened their own MS center, so we'll see what the MRI finds...
Please say a prayer for me, because my poor bladder is really struggling after 12 months with a foley catheter (it's changed every 3 weeks but my insides are wearing raw)...
Thanks,
Frank
Cooper City FL
I've had a CT scan and an MRI of my head. It was with an ENT's protocol so my Neuro wants a re-do plus the two of the spine.
Aren't they fun? I try to think of entire pieces of music or songs while I'm in there but sometimes they give you the headphones with music playing and it's not always great music.
It's not that I want to have M.S. but one of my bigger fears is that I will just have to live in this limbo for a very long time. I guess the alternative of having it is worse so I will definitely not complain.
Aren't they fun? I try to think of entire pieces of music or songs while I'm in there but sometimes they give you the headphones with music playing and it's not always great music.
It's not that I want to have M.S. but one of my bigger fears is that I will just have to live in this limbo for a very long time. I guess the alternative of having it is worse so I will definitely not complain.
I've had 3 MRI's so far... two 2 1/2 years ago (brain and c-spine), one just last week (c-spine). Right now I'm between neurologists though so nothing scheduled.. How many have you had so far?
Isn't it awful? It's almost as if I would rather an answer, good or bad, so I can move on with my life. The fear is sometimes worse than the reality.
Hope you are doing well and that you also get some answers soon. Have you had many MRI's? I'm on schedule to have three more, yikes! Head and two spine. Not pleasant.
Hope you are doing well and that you also get some answers soon. Have you had many MRI's? I'm on schedule to have three more, yikes! Head and two spine. Not pleasant.
Hey Spagheddie,
I'm not going to be any help as I am also in limboland! I just wanted to say I so understand about how frustrating the process is. My fiance is terrified, moreso than me. It's hard trying to convince him I'll be okay when there's so much weirdness going on (a lot of similar symptoms to you!)
Anyway, I just wanted to say, I hope you get answers soon.. and feel better!
(Also, I'm not sure if this is what you're asking, but I think ON = optic neuritis)
I'm not going to be any help as I am also in limboland! I just wanted to say I so understand about how frustrating the process is. My fiance is terrified, moreso than me. It's hard trying to convince him I'll be okay when there's so much weirdness going on (a lot of similar symptoms to you!)
Anyway, I just wanted to say, I hope you get answers soon.. and feel better!
(Also, I'm not sure if this is what you're asking, but I think ON = optic neuritis)
You're right! I think I do need some intervention with this anxiety because it's just beyond what I usually can handle.
I've been having strange sensations of weakness in my limbs, fatigue and a groggy/dizzy/drunk(not the good kind) feeling since my original virus in Aug. The entire situation I thought was over in Dec. when I started feeling better but returned in January with a really bad cold virus. I felt the dizziness again but not the weakness. The ENT saw some abnormal test results (caloric and eng) and sent me for the MRI for my ear which revealed lesions in my brain which sent me back to the nuero. He had his doubts till he saw the lesions and thought otherwise and referred me to a specialist. And here I am. That's about the shortest I could make that story.
The MS Nuero used the word "possible" and "suspicious" but she said nothing is confirmed because the symptoms aren't matching. What do you mean by "ON etc?"
And now back to sitting on the floor in the dark rocking back and forth and crying....Just Kidding!!
I've been having strange sensations of weakness in my limbs, fatigue and a groggy/dizzy/drunk(not the good kind) feeling since my original virus in Aug. The entire situation I thought was over in Dec. when I started feeling better but returned in January with a really bad cold virus. I felt the dizziness again but not the weakness. The ENT saw some abnormal test results (caloric and eng) and sent me for the MRI for my ear which revealed lesions in my brain which sent me back to the nuero. He had his doubts till he saw the lesions and thought otherwise and referred me to a specialist. And here I am. That's about the shortest I could make that story.
The MS Nuero used the word "possible" and "suspicious" but she said nothing is confirmed because the symptoms aren't matching. What do you mean by "ON etc?"
And now back to sitting on the floor in the dark rocking back and forth and crying....Just Kidding!!
COMMUNITY LEADER
lol well actually even if it did turn out to be MS, its still in your head (think about it) :0)
Q: Am I the only one who constantly tests themselves to see if they can still do something?
A: No your probably not the only one, but seriously if your 'testing' out of fear and or anxiety and the out come only produces even more fear and anxiety, then testing your self is not really a good thing to be doing.
I think of anxiety and fear as being like embriotic cells, once the process has started, unless something interferes with the process, it will continue to grow and grow infinitum. The only ways to interfere without medication, is to challenge your thinking or stop your self from doing the 'what ever' especially if the results still dont ease your anxiety or fear.
I suppose what i'm saying is if you have anxiety and fear that you've forgotten your car keys, and when you check your pockets you do find them, so any anxiety and fear is then completely removed, then thats all pretty 'normal'.
If you keep getting the anxiety and fear, so your constantly re-checking and re-checking to see if you still have your car keys, even though you still keep finding them exactly where they were before, and the removal of the anxiety and fear is only temperary, then that senario is our side of 'normal'.
I have a question for you, Did the neurologist say you are 'suspicious' or that you fit the catagory of 'possible MS' or are you interpreting because your in MS limbo?
I'm just finding it odd that you've been given a 'possible MS' dx with a normal neurological exam and only 1 semi MS located lesion, usually it takes at least clinical signs of lesions or a dx of ON etc before a neuro will even go there. I also had the impression the neuro was very doubtful so in my pea brain its not making sense lol forgive me for the Q's i'm full of it lol.
Anxiety is rather common when facing a possible disabling condition, if you can't keep it under control then please please seek medical assistance because it just doesn't need to get that difficult, left alone anxiety can be crippling so be proactive and dont let it get away from you.
:-)
Cheers........JJ
Q: Am I the only one who constantly tests themselves to see if they can still do something?
A: No your probably not the only one, but seriously if your 'testing' out of fear and or anxiety and the out come only produces even more fear and anxiety, then testing your self is not really a good thing to be doing.
I think of anxiety and fear as being like embriotic cells, once the process has started, unless something interferes with the process, it will continue to grow and grow infinitum. The only ways to interfere without medication, is to challenge your thinking or stop your self from doing the 'what ever' especially if the results still dont ease your anxiety or fear.
I suppose what i'm saying is if you have anxiety and fear that you've forgotten your car keys, and when you check your pockets you do find them, so any anxiety and fear is then completely removed, then thats all pretty 'normal'.
If you keep getting the anxiety and fear, so your constantly re-checking and re-checking to see if you still have your car keys, even though you still keep finding them exactly where they were before, and the removal of the anxiety and fear is only temperary, then that senario is our side of 'normal'.
I have a question for you, Did the neurologist say you are 'suspicious' or that you fit the catagory of 'possible MS' or are you interpreting because your in MS limbo?
I'm just finding it odd that you've been given a 'possible MS' dx with a normal neurological exam and only 1 semi MS located lesion, usually it takes at least clinical signs of lesions or a dx of ON etc before a neuro will even go there. I also had the impression the neuro was very doubtful so in my pea brain its not making sense lol forgive me for the Q's i'm full of it lol.
Anxiety is rather common when facing a possible disabling condition, if you can't keep it under control then please please seek medical assistance because it just doesn't need to get that difficult, left alone anxiety can be crippling so be proactive and dont let it get away from you.
:-)
Cheers........JJ
Well, in case any of you were wondering I had my appt. with an MS specialist, who I believe is a very good MS specialist ( I hope). She definitely had her doubts about the whole thing, she said only one of the lesions fell into the MS pattern and it was just barely in there. My Neuro exam was fine, I'm not sure if that means anything yet. She wants to have MRI's of my spine done and then take it from there. She made it very clear that it was not an easy process and all precautions are to be taken. She could not say with any confidence one way or the other and that I remain in the "suspicious" or "possible diagnoses" category.
This process is terrible. The anxiety involved in dealing with the day to day, questioning if anything is a symptom or if it's in my head...yikes...it could drive a person crazy. I feel better that I'm on a path to finding an answer (good or bad) but I'm so nervous at the potential outcome. Am I the only one who constantly tests themselves to see if they can still do something? Maybe I've just gone completely crazy! I know it's driving my fiancee crazy and it makes her even more nervous than she already is. Although she is very supportive and patient (well most of the time) with me.
Okay - you're all not my psychologist so I think I'll put a cork in it. I hope everyone else who commented here is doing well.
E
This process is terrible. The anxiety involved in dealing with the day to day, questioning if anything is a symptom or if it's in my head...yikes...it could drive a person crazy. I feel better that I'm on a path to finding an answer (good or bad) but I'm so nervous at the potential outcome. Am I the only one who constantly tests themselves to see if they can still do something? Maybe I've just gone completely crazy! I know it's driving my fiancee crazy and it makes her even more nervous than she already is. Although she is very supportive and patient (well most of the time) with me.
Okay - you're all not my psychologist so I think I'll put a cork in it. I hope everyone else who commented here is doing well.
E
Thanks for the idea but I have been tested for Lyme's also (twice, i think). Although they say the Lyme's tests aren't accurate either. Jeez, what do they know? One band on the Lyme's was positive (out of 9? I think) and then they did the Western Blot and then ran another Lyme's test so I feel like I'm clear of that but who knows.
It was odd to have a virus in the middle of the summer, I usually do not get many virus' with fever and certainly not during the summer. I mentioned West Nile to my Dr. because I live in an area with confirmed cases but they kind of shrugged it off. So onward and upward.
It was odd to have a virus in the middle of the summer, I usually do not get many virus' with fever and certainly not during the summer. I mentioned West Nile to my Dr. because I live in an area with confirmed cases but they kind of shrugged it off. So onward and upward.
I don't know your whole story, but have you looked into conditions that mimic MS? I am wondering if your virus last August could have been the onset of Lyme Disease, one of the known MS mimics. I have it and it started very much like yours, like a nasty virus. Eventually I developed symptoms very similar to MS, including white matter brain lesions. The lesions didn't show up highlighted under contrast, though, like MS lesions usually do. That sent me scouring the Internet looking for other possibilities after my neuro was stumped. I never did develop the typical muscle or joint pain. Perhaps you could ask your doctor about getting tested for it.
COMMUNITY LEADER
Please keep in mind the way the damage generated by MS works, especially early in the disease process. If you compare MS to what happens commonly when a person has a bad viral infection eg mono. You will realise that what you've experienced and have again experienced is more in line with viral and less in line with a neurological disease like MS.
Having a few lesions doesn't necessarily mean its MS, their location, shape, size etc + MS clinical sx + MS sx pattern etc does. To some extent depending on their location etc they can be found in perfectly healthy individuals. Brain lesions can be caused by injury, infection, age, exposure to certain chemicals, smoking, drugs, problems with the immune system, mental health etc etc etc. and often the cause just isn't known and the lesions have no negative affects what so ever.
The more you add to the description of what youve experienced the more inconsistent with MS the picture gets, anything 'all over' or crossing over the body is an indication or 'red flag' that its not related to MS. Some viral infections recurr and can take years to fully recover from, and i suppose thats the one sure thing you know has happened to you.
So for what its worth, i'd be focusing on getting as healthy as humanly possible, eating foods rich in B12, Iron, protein etc and adding exercise, yoga etc because thats proactive and something you basically should be doing regardless of disease or no disease.
Cheers...........JJ
Having a few lesions doesn't necessarily mean its MS, their location, shape, size etc + MS clinical sx + MS sx pattern etc does. To some extent depending on their location etc they can be found in perfectly healthy individuals. Brain lesions can be caused by injury, infection, age, exposure to certain chemicals, smoking, drugs, problems with the immune system, mental health etc etc etc. and often the cause just isn't known and the lesions have no negative affects what so ever.
The more you add to the description of what youve experienced the more inconsistent with MS the picture gets, anything 'all over' or crossing over the body is an indication or 'red flag' that its not related to MS. Some viral infections recurr and can take years to fully recover from, and i suppose thats the one sure thing you know has happened to you.
So for what its worth, i'd be focusing on getting as healthy as humanly possible, eating foods rich in B12, Iron, protein etc and adding exercise, yoga etc because thats proactive and something you basically should be doing regardless of disease or no disease.
Cheers...........JJ
I should just ask one more thing. Back in Oct. when I was having a feeling of weakness in my arms and legs (jelly legs as I and many like to call it) as well as the dizzy feeling I had a very thorough Neuro. exam. The neuro said that everything was "fantastic with very crisp reflexes." Which is why I think I wasn't originally sent for an MRI. I know that no one thing can indicate MS or rule it out but should I have shown some kind of abnormality in the neuro exam considering there are lesions on my MRI?
I feel like I have a better chance at guessing lotto numbers than figuring out a concrete way to get a diagnoses. Now I'll sound like my father and say "Jeez, they can land a man on the moon..." How does M.S. evade these Dr's so readily?
Now I'm ranting.
I feel like I have a better chance at guessing lotto numbers than figuring out a concrete way to get a diagnoses. Now I'll sound like my father and say "Jeez, they can land a man on the moon..." How does M.S. evade these Dr's so readily?
Now I'm ranting.
COMMUNITY LEADER
One of the problems with MS is that it is such a MySterious disease, it is unique to each person but the sx still behave or present consistently with damage to your CNS. Its entirely possible to not realise something you experience is a sx of a disease like MS, I suspect women in general are rather good at making 'plausible' excuses and getting on with their busy lives. I think most people would not really be thinking something is abnormally wrong, very easy to do when sx's are mild, its a lot harder to ignore sx's when they are 'in your face' abnormal.
I call my 09 episode 'my big bang' because it was such a huge 'in your face' wake up call that my brain was fried but i've really been loosing my legs and cognitive/communication abilities since at least 03, recurring and getting worse episodes ever since. I can anacdotally trace some of todays sx back to way before my son was born (he's 15 this year), my vision issues for example go back to when i was 29. I started having episodes of blurry vision and focusing problems but every time I got it checked out i had 20/20 vision. After my big bang, that recurring blurr had become almost but not quite constant double vision, and today my vision is obviously double and its here all the time.
So in retrospect I can anacdotally identify vision as probably my first MS sx. I actually did for many many years ignore or work through all my recurring incidents because when i did bother to get it checked out, the blood tests or xrays never identified what was wrong. It basically went away, oh they always came back again but it wasn't until things didn't go away that i really started questioning what was going on. The dx that replaced 'circulation issues' ended up being 'probably hypoglycemia' which i believed enough to never think of questioning. There was no doubt all these issues were getting worse and id accumilated too many additional yet unexplained muscle issues but still I didn't question the dx, until after everything totally changed for ever in 09.
LOL id been trying to fix my tremor, tingles, vision and fatigue by stuffing my face with really healthy food 5 times a day, when that didn't help upped it to 7 times, then adding high protein snacks in between, funny but it never did work lol though i really really tried hard for over 2 years!
I still try to find ways to work around everything, my body will be sending out warning signs and i really really dont want to acknowledge it and it maybe slightly dumber than dumb but i'm known for saying 'i'm fine', even when its obvious that i'm not, i am a tad stuborn lol My tremor for example is always there in a smaller but continual rumbling. The more energy expended the bigger the tremor will get, i wakeboard knowing exactly what i'm going to be dealing with, walking is more often than not beyond me, i look like i've got late stage parkinson's and i can't talk but i am absolutely estatic, regardless because i'm still doing it!
So after all that (lol i am a member of Quix's Andonandon club), sure its possible to have many MS sx's and not know there's a problem, it can often depend on the type of sx(s) you get and how hard it hits. I'm sure personality type fits into it somewhere, how much i couldn't say but i'm sure it plays its part. If its commonly accepted that some people will easily worry and be thinking worst case senario, then surly the opposite must be true. So from my way of thinking denial is a wonderous thing! lol
Golly i do go on and on sometimes though i never intend too, hopefully though some of it, made some sense :0)
Cheers............JJ
I call my 09 episode 'my big bang' because it was such a huge 'in your face' wake up call that my brain was fried but i've really been loosing my legs and cognitive/communication abilities since at least 03, recurring and getting worse episodes ever since. I can anacdotally trace some of todays sx back to way before my son was born (he's 15 this year), my vision issues for example go back to when i was 29. I started having episodes of blurry vision and focusing problems but every time I got it checked out i had 20/20 vision. After my big bang, that recurring blurr had become almost but not quite constant double vision, and today my vision is obviously double and its here all the time.
So in retrospect I can anacdotally identify vision as probably my first MS sx. I actually did for many many years ignore or work through all my recurring incidents because when i did bother to get it checked out, the blood tests or xrays never identified what was wrong. It basically went away, oh they always came back again but it wasn't until things didn't go away that i really started questioning what was going on. The dx that replaced 'circulation issues' ended up being 'probably hypoglycemia' which i believed enough to never think of questioning. There was no doubt all these issues were getting worse and id accumilated too many additional yet unexplained muscle issues but still I didn't question the dx, until after everything totally changed for ever in 09.
LOL id been trying to fix my tremor, tingles, vision and fatigue by stuffing my face with really healthy food 5 times a day, when that didn't help upped it to 7 times, then adding high protein snacks in between, funny but it never did work lol though i really really tried hard for over 2 years!
I still try to find ways to work around everything, my body will be sending out warning signs and i really really dont want to acknowledge it and it maybe slightly dumber than dumb but i'm known for saying 'i'm fine', even when its obvious that i'm not, i am a tad stuborn lol My tremor for example is always there in a smaller but continual rumbling. The more energy expended the bigger the tremor will get, i wakeboard knowing exactly what i'm going to be dealing with, walking is more often than not beyond me, i look like i've got late stage parkinson's and i can't talk but i am absolutely estatic, regardless because i'm still doing it!
So after all that (lol i am a member of Quix's Andonandon club), sure its possible to have many MS sx's and not know there's a problem, it can often depend on the type of sx(s) you get and how hard it hits. I'm sure personality type fits into it somewhere, how much i couldn't say but i'm sure it plays its part. If its commonly accepted that some people will easily worry and be thinking worst case senario, then surly the opposite must be true. So from my way of thinking denial is a wonderous thing! lol
Golly i do go on and on sometimes though i never intend too, hopefully though some of it, made some sense :0)
Cheers............JJ
Hey Spagheddie :)
To answer your question about how severe MS symptoms will present, it can go either way, depending on the individual and the symptom. Some people don't realize they have MS until it's slapping them in the face. For example, I had symptoms for years that were slight enough to ignore, and that's exactly what I did. I believe I lived and worked through two relapses without a clue that something was wrong. My last relapse was finally bad enough to get me to the doc to find answers, but I was still able to work through it. If I hadn't landed in the office of a kind and intelligent neurologist, I'd probably still be blaming all my symptoms on migraines and aging.
- Jane
To answer your question about how severe MS symptoms will present, it can go either way, depending on the individual and the symptom. Some people don't realize they have MS until it's slapping them in the face. For example, I had symptoms for years that were slight enough to ignore, and that's exactly what I did. I believe I lived and worked through two relapses without a clue that something was wrong. My last relapse was finally bad enough to get me to the doc to find answers, but I was still able to work through it. If I hadn't landed in the office of a kind and intelligent neurologist, I'd probably still be blaming all my symptoms on migraines and aging.
- Jane
Sorry for the confusion, it's been such a long ordeal. Originally in August I had gotten a virus which set off the dizziness. It went away about 2 months in but I was left with tremors, etc. In January I had another sinus infection/virus which brought the dizziness back but not the weakness/tremor. Although that has begun happening now about 3 months later and the dizziness hasn't lifted. The weakness and tremor come and go, depends on what I'm doing or how tired I am.
Hope that clears things up. I'm just wondering really how symptoms present in M.S. Is it something that you can ignore and work through or will it be very obvious and present?
Thanks again all.
Hope that clears things up. I'm just wondering really how symptoms present in M.S. Is it something that you can ignore and work through or will it be very obvious and present?
Thanks again all.
JJ - Thank you so much for your post. I'm taking a break from the dx rollercoaster too, but still peeking in on the forum every now and then. It was really interesting to me to read your story. It really reminded me that I'm not the only one on the rollercoaster. :)
I also have tremors and they can be a real pain. It seems that when I really need my arms to work for me is when they're the most out of control. Burned myself on the oven last night and was torn between tears and laughing at the ridiculousness (is that a word?) of the whole situation.
Anyway, thanks again! :) Smiles,
Laura
I also have tremors and they can be a real pain. It seems that when I really need my arms to work for me is when they're the most out of control. Burned myself on the oven last night and was torn between tears and laughing at the ridiculousness (is that a word?) of the whole situation.
Anyway, thanks again! :) Smiles,
Laura
COMMUNITY LEADER
Just to clarrify something that has got me a little confused, you've again mentioned 3 months but back in mid October you said
"7 weeks after the virus I was examined by a neuro who did a neuro exam (Normal) and mentioned Post-Viral syndrome combined with anxiety (as I have been fearing the worst since the grogginess). The fatigue has gotten better and the grogginess/dizziness lifted around week 6. However it is now almost 3 months since the virus and I still feel weakness, tremors and certain muscle twitching. The weakness feels as if I do something for too long my muscles feel like I've done a ton of exercise when I haven't. Of course searching on here I could easily have any neuro disease but it's the weakness, tremor and twitching that leaves me paranoid."
So are you saying that these sx all or some sx went away and then they came back again or that this has continued on since the sinus infection back in July/August last year? Sorry but i like to have a clear picture of what people are talking about and my brain got stuck on your time frame.
Now to try to answer your question lol, not sure it matters but i'm not officially dx though my doctor has no doubt its MS, i am purposely having a break from the dx roller coaster. Anyway from my personal experience, there was absolutely no doubt that i was dealing with a neurological condition, prior to my big bang which is quite another long borring story lol
In April 09, I thought i'd picked up a bug again, i'd just got over one that everyone in our house got, we do like to share lol the only difference was that i wasn't doing any of the usual flu bug things, eg no fever, coughing, sneezing etc. I wasn't dizzy exactly, it was more the floor tilted underneath me and i'd stumble or i'd suddenly vear off into a wall, i'd also fall over if i closed my eyes or the lighting changed which was weird. I was very weak and the tremor running through me was way over the top but still i thought it was a bug, and tried to sleep it off.
I couldn't seem to shake this bug and about a week or so into this, my mum calls checking up how i was feeling, she's talking and i couldn't work out her name, i couldn't get words to come out of my mouth properly either, i was slurring and stuttering and i'd never ever done that before. She thought i was half asleep, i thought i just needed more sleep and to eat more. Yeah how totally stupid. lol
That evening, i realised i couldn't work out my husbands or my childrens names either, communicating was difficult, slurring and or stuttering, loosing words in the middle of talking, not following the conversation. It was ALL the cognitive issues were what first clued me in that there was something really wrong with my brain, i 'was' verbally and cognitively gifted and this was soooooo not happening!
I'd not even considered all the other clues were brain related, sheesh i was walking like a human string puppet, all bouncy etc. Most of the tremor's and other physical stuff had started becoming really problematic recurring issues about 3 or so years prior, each time getting worse instead of better but my doctor at the time 'thought and only thought' I had hypoglycemia, thats even though i always had perdectly normal healthy blood readings lol.
At my husbands insistance i emailed a girl friend (fellow gifted) who was also a doctor, i'd never spoken to her before about anything medical. Anyway she called as soon as she read what i was currently experiencing, and after talking to me and hearing me struggle to communicate, and I was really stuggling. She listening to everything, even things i'd kept to my self and thankfully she helped me out supplying words that i just couldn't get out of my mouth.
Her first thought was MS, MS, and MS and she was really pi$$ed off at my dr for not looking beyond the idea that I had hypoglycemia and she was not too happy with me for hiding so many things or for passing them off as meaningless. Basic neuro testing and the first time neuro testing was ever done, was unfortunately abnormal and the dx roller coaster started.
I'm probably a lot worse today than my big bang but i still feel really lucky compaired to other people and i think i'll always be a 'happy go lucky' person lol I've never once thought my brain was playing tricks on me or that anxiety or depression was the problem, and it doesn't matter if i'm distracted or not, i'll still stab my self in the face with my fork or throw whats in my hand across the room, my tremor just doesn't stop for anything.
To be honest with you, neurological conditions that cause tremor such as MS are actually more likely to be worse when your doing something, if yours is ok when your distracted or your sx get worse the more you think about them, its quite possible its not a neurological condition your dealing with and its all something easier to treat.
Cheers (if your still awake lol)..........JJ
"7 weeks after the virus I was examined by a neuro who did a neuro exam (Normal) and mentioned Post-Viral syndrome combined with anxiety (as I have been fearing the worst since the grogginess). The fatigue has gotten better and the grogginess/dizziness lifted around week 6. However it is now almost 3 months since the virus and I still feel weakness, tremors and certain muscle twitching. The weakness feels as if I do something for too long my muscles feel like I've done a ton of exercise when I haven't. Of course searching on here I could easily have any neuro disease but it's the weakness, tremor and twitching that leaves me paranoid."
So are you saying that these sx all or some sx went away and then they came back again or that this has continued on since the sinus infection back in July/August last year? Sorry but i like to have a clear picture of what people are talking about and my brain got stuck on your time frame.
Now to try to answer your question lol, not sure it matters but i'm not officially dx though my doctor has no doubt its MS, i am purposely having a break from the dx roller coaster. Anyway from my personal experience, there was absolutely no doubt that i was dealing with a neurological condition, prior to my big bang which is quite another long borring story lol
In April 09, I thought i'd picked up a bug again, i'd just got over one that everyone in our house got, we do like to share lol the only difference was that i wasn't doing any of the usual flu bug things, eg no fever, coughing, sneezing etc. I wasn't dizzy exactly, it was more the floor tilted underneath me and i'd stumble or i'd suddenly vear off into a wall, i'd also fall over if i closed my eyes or the lighting changed which was weird. I was very weak and the tremor running through me was way over the top but still i thought it was a bug, and tried to sleep it off.
I couldn't seem to shake this bug and about a week or so into this, my mum calls checking up how i was feeling, she's talking and i couldn't work out her name, i couldn't get words to come out of my mouth properly either, i was slurring and stuttering and i'd never ever done that before. She thought i was half asleep, i thought i just needed more sleep and to eat more. Yeah how totally stupid. lol
That evening, i realised i couldn't work out my husbands or my childrens names either, communicating was difficult, slurring and or stuttering, loosing words in the middle of talking, not following the conversation. It was ALL the cognitive issues were what first clued me in that there was something really wrong with my brain, i 'was' verbally and cognitively gifted and this was soooooo not happening!
I'd not even considered all the other clues were brain related, sheesh i was walking like a human string puppet, all bouncy etc. Most of the tremor's and other physical stuff had started becoming really problematic recurring issues about 3 or so years prior, each time getting worse instead of better but my doctor at the time 'thought and only thought' I had hypoglycemia, thats even though i always had perdectly normal healthy blood readings lol.
At my husbands insistance i emailed a girl friend (fellow gifted) who was also a doctor, i'd never spoken to her before about anything medical. Anyway she called as soon as she read what i was currently experiencing, and after talking to me and hearing me struggle to communicate, and I was really stuggling. She listening to everything, even things i'd kept to my self and thankfully she helped me out supplying words that i just couldn't get out of my mouth.
Her first thought was MS, MS, and MS and she was really pi$$ed off at my dr for not looking beyond the idea that I had hypoglycemia and she was not too happy with me for hiding so many things or for passing them off as meaningless. Basic neuro testing and the first time neuro testing was ever done, was unfortunately abnormal and the dx roller coaster started.
I'm probably a lot worse today than my big bang but i still feel really lucky compaired to other people and i think i'll always be a 'happy go lucky' person lol I've never once thought my brain was playing tricks on me or that anxiety or depression was the problem, and it doesn't matter if i'm distracted or not, i'll still stab my self in the face with my fork or throw whats in my hand across the room, my tremor just doesn't stop for anything.
To be honest with you, neurological conditions that cause tremor such as MS are actually more likely to be worse when your doing something, if yours is ok when your distracted or your sx get worse the more you think about them, its quite possible its not a neurological condition your dealing with and its all something easier to treat.
Cheers (if your still awake lol)..........JJ
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