Aa
Early symptoms
I would like to hear from all who have been diagnosed with MS = what were you earliest symptoms? There may already be threads on this, but I can't find them and am new to this forum.
Please tell me your story - especialy concentrating on your first clues that something was wrong.....
Please tell me your story - especialy concentrating on your first clues that something was wrong.....
I used to read a lot. I had a library card, and took books and books out each week. I haven't read a book in years. Unless it's somehting riveting, that I'm really, really interested in, I can't follow it. If its all engrossing, I can, though.
Now I really have to hunt to find that library card when I need it. It isn't used often enough. But there is always the trusty computer, lol.
They say, apparently, that ms memory issues are not the same as altzeimer type issues, your brain will not just turn to mush. lol.
We just have to learn good compensatory tricks. I'm still practising them, lol.
I am not diagnosed, as of yet. I just fit enough of the symptoms, and have had enough of a time for a year and a half badbadbad, that I, as wwell as others are pretty certain. Though, who knows, I could just be the psychotic person some docs tend to feel I am????????????///
Good luck
Erica
Now I really have to hunt to find that library card when I need it. It isn't used often enough. But there is always the trusty computer, lol.
They say, apparently, that ms memory issues are not the same as altzeimer type issues, your brain will not just turn to mush. lol.
We just have to learn good compensatory tricks. I'm still practising them, lol.
I am not diagnosed, as of yet. I just fit enough of the symptoms, and have had enough of a time for a year and a half badbadbad, that I, as wwell as others are pretty certain. Though, who knows, I could just be the psychotic person some docs tend to feel I am????????????///
Good luck
Erica
Thanks for elaborating. That explanation gives me even more of a sinking feeling because I have also been having memory and recall problems over the last few years. And while I am sitting here reading your explanation, I am thinking of all the times I have been so frustrated with myself over the last year or so because I am an avid reader and have always just flew thru my reading, but now I find myself reading the same sentence over and over just to grasp the meaning. But oddly enough, it hadn't concerned me enough to seek work-up, I just thought it was because I was gettting a little older and maybe it was stress (? - although I'm not really under any stress - I guess that is a cop-out). And I never even once thought of it as connected to MS symptoms. This has really opened my eyes. My family teases me incessantly about my "bad" memory and I'm only 34! Now, I'm wondering if it is something more than "bad memory".
In 2002 I went to my neuro, who had been treating me for psychomotor and complex partial seizures saying my brain wasn't working. Short term memory issues. He thought maybe my seizures, and that was that.
A couple of years later, I noticed slow word recall, reasoning debillitated, and losing myself in the middle of thoughts, and speech, lots. I had neuropsych testing. It showed deficits in many areas. It also showed that in some areas, I did exceedingly well. I don't retain what I hear well, it helps if I read it, a few times is best.
I had the neuropsych testing repeated a year and a half later, which demonstrated the same results, with a few more deficits in the bad locales. This reinforced for them that I wasn't malingering, the results were honest. Information processing and attention and concentration are affected.
I compensate by smiling lots, and laughing at myself. Sticky notes are my saviours, I have pens everywhere. Doing crosswords, and other puzzles is good for the brain. Also, just going for a drive/walk and noticing as much about your surroundings is good stimulation.
Erica
A couple of years later, I noticed slow word recall, reasoning debillitated, and losing myself in the middle of thoughts, and speech, lots. I had neuropsych testing. It showed deficits in many areas. It also showed that in some areas, I did exceedingly well. I don't retain what I hear well, it helps if I read it, a few times is best.
I had the neuropsych testing repeated a year and a half later, which demonstrated the same results, with a few more deficits in the bad locales. This reinforced for them that I wasn't malingering, the results were honest. Information processing and attention and concentration are affected.
I compensate by smiling lots, and laughing at myself. Sticky notes are my saviours, I have pens everywhere. Doing crosswords, and other puzzles is good for the brain. Also, just going for a drive/walk and noticing as much about your surroundings is good stimulation.
Erica
One more thing, when you say "cognitive problems" or cognitive symptoms", please elaborate.
Wow! Thanks for being so open and welcoming and willing to share your stories! First of all, yes you are correct my name is Denise.
Probably the first thing I can think back to that something wasn't quite right was about 2 years ago when I started feeling like I couldn't always empty my bladder fully and also around that time I got to where I could not stand heat. No big deal, never really thought much of it, just Hmmmm.... this is strange. Now in the last several months I have been having unexplained vertigo and I kept hoping it was just inner ear, but never really suspecting anything else until suddenly over the last couple of weeks I have "pins and needles". My first episode that I remember was during my 30 minute daily walk, my legs suddenly had intense "pins and needles" just out of blue. I was like WHAT?? What is this all about? I'm obvsiously not pinching any nerves or anything by sitting because I'm exercising! Then a few days later, I get to work and my left arm developed intense "pins and needles", I kept shaking it thinkimg I must have done something weird, but on it went for 4 or 5 solid hours. Then yesterday again with the "pins and needles" - which again came on during my exercising but it was kind of just all over even somewhat in my belly area. Very strange. So, every time I put these symptoms together and search I keep coming back to MS. So, no, I haven't been to my GP about this because I have really just put these symptoms all together over the last few days - which is what lead me to this forum and to my question. So, what do you guys think? What should my next step be? Also, when some of you mention "heat intolerance" -please explain that more in depth because I'm not real sure what symptoms are being evoked by heat in people with MS.
Also, one more thing... someone just enlightened me toward the front of this thread.... I had no idea that there was a difference in "symptoms" and "an MS attack". I think I kept talking myself out of the fact that MS was a possibilty for me because my symptoms were too different in frequency than what I read about the MS attacks.... Because of reading that "attacks" happened quite far apart - my symptoms weren't that far apart, so I was like NO, this can't be it. Thoughts?
Probably the first thing I can think back to that something wasn't quite right was about 2 years ago when I started feeling like I couldn't always empty my bladder fully and also around that time I got to where I could not stand heat. No big deal, never really thought much of it, just Hmmmm.... this is strange. Now in the last several months I have been having unexplained vertigo and I kept hoping it was just inner ear, but never really suspecting anything else until suddenly over the last couple of weeks I have "pins and needles". My first episode that I remember was during my 30 minute daily walk, my legs suddenly had intense "pins and needles" just out of blue. I was like WHAT?? What is this all about? I'm obvsiously not pinching any nerves or anything by sitting because I'm exercising! Then a few days later, I get to work and my left arm developed intense "pins and needles", I kept shaking it thinkimg I must have done something weird, but on it went for 4 or 5 solid hours. Then yesterday again with the "pins and needles" - which again came on during my exercising but it was kind of just all over even somewhat in my belly area. Very strange. So, every time I put these symptoms together and search I keep coming back to MS. So, no, I haven't been to my GP about this because I have really just put these symptoms all together over the last few days - which is what lead me to this forum and to my question. So, what do you guys think? What should my next step be? Also, when some of you mention "heat intolerance" -please explain that more in depth because I'm not real sure what symptoms are being evoked by heat in people with MS.
Also, one more thing... someone just enlightened me toward the front of this thread.... I had no idea that there was a difference in "symptoms" and "an MS attack". I think I kept talking myself out of the fact that MS was a possibilty for me because my symptoms were too different in frequency than what I read about the MS attacks.... Because of reading that "attacks" happened quite far apart - my symptoms weren't that far apart, so I was like NO, this can't be it. Thoughts?
oh, my. what a freudian slip. i meant "laugh to keep from crying," not "life to keep from crying," in my previous comment.
Tingling in feet. Followed shortly thereafter by the "MS hug" -- sensation of belt around my chest. These sensations came and went.
A few months later, right arm went totally numb for a week or so. After moving to Durham, NC, a very hot place, in August, noticed heat intolerance. Then I got extreme intermittent vertigo (extreme as in if i was walking when it hit, I had to stand still and hold to the wall or sink to the floor to avoid falling.
Ah, yes. Good times. Hahahahaha. Remember--life to keep from crying.
A few months later, right arm went totally numb for a week or so. After moving to Durham, NC, a very hot place, in August, noticed heat intolerance. Then I got extreme intermittent vertigo (extreme as in if i was walking when it hit, I had to stand still and hold to the wall or sink to the floor to avoid falling.
Ah, yes. Good times. Hahahahaha. Remember--life to keep from crying.
Hi and welcome to our family. I hope that we can help you and give you some answers. My first symptom looking back now was definitely fatigue. Then it was numbness in my left arm and hand then my right arm and hand. This all within a few weeks moved down to my toes.
What are the symptoms that you are having right now? Are you going to a neuro? The next question is have you had any test ran, like MRI's?
I'll be praying,
Carol
What are the symptoms that you are having right now? Are you going to a neuro? The next question is have you had any test ran, like MRI's?
I'll be praying,
Carol
I first starting having trouble with not being able to empty my bladder and after a couple years of this getting progressively worse, I was diagnosed with neurogenic bladder. They didn't know why and couldn't fix it, so learned to self-cath. 8 years later I was having major cognitive problems (problem solving, naming things) and Dr did MRI and sent me to Neuro. She suspected and did evoked potential testing. I was 3 stand deviations below the norm auditorially. She then diagnosed me and started me on Avonex.
Barb
Barb
Hi Denise,
one of my first symptoms was sever fatigue, along with my hands and feet going to sleep all the time.
Im a single mother of three teenage boy's so I thought maby I was just over doing it and needed vitimeans...
after about a year of this I was leaving work one day and my right leg became really heavy, that scared me so i made an appt. to my GP.
3 weeks later I was DX. with MS.
good luck to you.
april
one of my first symptoms was sever fatigue, along with my hands and feet going to sleep all the time.
Im a single mother of three teenage boy's so I thought maby I was just over doing it and needed vitimeans...
after about a year of this I was leaving work one day and my right leg became really heavy, that scared me so i made an appt. to my GP.
3 weeks later I was DX. with MS.
good luck to you.
april
Though I am undiagnosed, I fit the pattern. For interests sake, my first symptom was cognitive disfunction. Mixed with my left foot tripping me, and my left knee collapsing and then recovering, so I never actuallly hit the ground.
Weird, or normal? lol
Erica
Weird, or normal? lol
Erica
Am I right about your name?
My first symptoms were a huge increase in fatigue and severe heat intolerance. I was already fatigued from another disorder. Then I lost the ability to lift my right knee up. My right hip flexors were weak. At the same time I developed spasticity in my entire right lower extremity. Those three things never improved and have gradually worsened.
My next symptom a few months later was a brief sensory one. It felt like warm water was running down my right thigh. This would happen several times a day and lasted about a month. A month of grabbing myself thinking I was incontinent! I also developed numbness of my perineum during that time. These mostly resolved.
Quix
My first symptoms were a huge increase in fatigue and severe heat intolerance. I was already fatigued from another disorder. Then I lost the ability to lift my right knee up. My right hip flexors were weak. At the same time I developed spasticity in my entire right lower extremity. Those three things never improved and have gradually worsened.
My next symptom a few months later was a brief sensory one. It felt like warm water was running down my right thigh. This would happen several times a day and lasted about a month. A month of grabbing myself thinking I was incontinent! I also developed numbness of my perineum during that time. These mostly resolved.
Quix
Lessee... first symptoms?
- My very first symptom was full-body numbness and tingling, combined with paralysis. This was at age 12.
- Weird muscle cramps in places that don't get cramps. Like my right calf in the middle of the night, or in my feet. Or my esophagus!
I didn't think anything was out of the ordinary until I started having vertigo a couple of years ago. This was shortly followed by numbness and tingling, some cognitive symptoms and equilibrium problems, so I went to the doctor and... here we are!
- My very first symptom was full-body numbness and tingling, combined with paralysis. This was at age 12.
- Weird muscle cramps in places that don't get cramps. Like my right calf in the middle of the night, or in my feet. Or my esophagus!
I didn't think anything was out of the ordinary until I started having vertigo a couple of years ago. This was shortly followed by numbness and tingling, some cognitive symptoms and equilibrium problems, so I went to the doctor and... here we are!
First of all, WELCOME to the MS Forum. We are so glad that you found us.
In my case, my first symptom probably occured long before my first "attack." I always seemed sensitive to heat. I had tingling and numbness in various areas of my body that were unexplained. I got frequent cramps, which I now know are called spasms.
My first "attack" started shortly after a severe upper respiratory infrection. I woke up one morning, went into the shower and could not feel the water hitting the whole right side of my back. When this right sided torso numbness continued for over a week, I went to my family doctor. They thought I had shingles. They gave me medication and told me to come back in ten days if it wasn't better. The medication did nothing. They then sent me to a Neurologist......Then the eventual diagnosis of Multiple Sclerosis.
Again welcome to the forum. Any questions you have...ask away! That's what we are here for. Our opinions about dealing with MS and most of all care and compassion to those seeking answers.
Heather
In my case, my first symptom probably occured long before my first "attack." I always seemed sensitive to heat. I had tingling and numbness in various areas of my body that were unexplained. I got frequent cramps, which I now know are called spasms.
My first "attack" started shortly after a severe upper respiratory infrection. I woke up one morning, went into the shower and could not feel the water hitting the whole right side of my back. When this right sided torso numbness continued for over a week, I went to my family doctor. They thought I had shingles. They gave me medication and told me to come back in ten days if it wasn't better. The medication did nothing. They then sent me to a Neurologist......Then the eventual diagnosis of Multiple Sclerosis.
Again welcome to the forum. Any questions you have...ask away! That's what we are here for. Our opinions about dealing with MS and most of all care and compassion to those seeking answers.
Heather
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