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Is this PPMS?
Hi,
I am 28 M and need some help regarding MS
I have been reading and listening to people who have PPMS.
And i am confused if i have it.
My case being:
I was perfectly good until the year 2003. And 2004 sleeping arms and pins and needles started, with both arms and legs. And there was some 10 percent numb feeling all over my body. And i was termed lazy for sleeping for many hours in my hostel.And also i had 10 percent loss of concentration.
And everything was progressing slowly i can say, but no disabling symptoms at all. Right now i am still active, but cognitive skills decreased by 35 percent in these 10 years, legs are bit weak, even arms. No vision problems at all.
Sensation of feeling and taste reduced by 30 percent. Reading speed and thinking speed decreased by 35 percent.
I have no problems walking, but i still feel legs are weak.
2011 i was diagonized with a very low level of Vitamin D and thin bones. Now my Vit D is in normal range.
2012 my b12 was tested by neuro doc to be at a lower range of 200. So i was given a 1 year,montly shots treatment. Pins and needles improved.
2013 i complained the less sensation of touch, so was ordered an Mri. Nothing significant was found except a small lesion in brain. Spine was clear.
2014: 1 year later the brain mri too turned normal. No lesion was found.
Used some medicine
But the symptoms i have to deal with still are, confusion, difficulty remembering, difficulty finishing tasks in time. I mean slowness in any activity. And also impairment in perception of touch, i still can feel 60 percent, there is no complete numness anywhere on my body.
All these years, i was also dealing with an irritable bowel.
Apart from these i donot have any disabling symptoms that i heard on the videos of PPMS patients.
Do you think that mine is a case of PPMS? My doubt is, whether the disease can be so mild and can span across so many years?10 years?
I am 28 M and need some help regarding MS
I have been reading and listening to people who have PPMS.
And i am confused if i have it.
My case being:
I was perfectly good until the year 2003. And 2004 sleeping arms and pins and needles started, with both arms and legs. And there was some 10 percent numb feeling all over my body. And i was termed lazy for sleeping for many hours in my hostel.And also i had 10 percent loss of concentration.
And everything was progressing slowly i can say, but no disabling symptoms at all. Right now i am still active, but cognitive skills decreased by 35 percent in these 10 years, legs are bit weak, even arms. No vision problems at all.
Sensation of feeling and taste reduced by 30 percent. Reading speed and thinking speed decreased by 35 percent.
I have no problems walking, but i still feel legs are weak.
2011 i was diagonized with a very low level of Vitamin D and thin bones. Now my Vit D is in normal range.
2012 my b12 was tested by neuro doc to be at a lower range of 200. So i was given a 1 year,montly shots treatment. Pins and needles improved.
2013 i complained the less sensation of touch, so was ordered an Mri. Nothing significant was found except a small lesion in brain. Spine was clear.
2014: 1 year later the brain mri too turned normal. No lesion was found.
Used some medicine
But the symptoms i have to deal with still are, confusion, difficulty remembering, difficulty finishing tasks in time. I mean slowness in any activity. And also impairment in perception of touch, i still can feel 60 percent, there is no complete numness anywhere on my body.
All these years, i was also dealing with an irritable bowel.
Apart from these i donot have any disabling symptoms that i heard on the videos of PPMS patients.
Do you think that mine is a case of PPMS? My doubt is, whether the disease can be so mild and can span across so many years?10 years?
Best Answer
I had 5 MRIs for diagnosis and from the beginning they showed MS lesions. I have had double vision for over 40 years. They knew I had something wrong with my brain stem in the 1960's way before MRIs. They did not think children got MS back then.
Alex
Alex
Reading your post made a lot of difference actually. :-)
I thank you very much!!
Yes, though i do have the burden of symptoms with me, i will not stop my present life or not stop developing my tomorrow as you have advised.
And let my neurologist figure out whatever it is, as you told.
Let it take its own time. And i am not going to worry much from now on.
Also i will ask for cognitive test for sure.
And all the health things you spoke of, i think i should start off with them right now.
This is an invaluable thing you have done to me. I am starting to focus it on things that actually matter. :-)
So nice of you. Thank you so much once again.
I thank you very much!!
Yes, though i do have the burden of symptoms with me, i will not stop my present life or not stop developing my tomorrow as you have advised.
And let my neurologist figure out whatever it is, as you told.
Let it take its own time. And i am not going to worry much from now on.
Also i will ask for cognitive test for sure.
And all the health things you spoke of, i think i should start off with them right now.
This is an invaluable thing you have done to me. I am starting to focus it on things that actually matter. :-)
So nice of you. Thank you so much once again.
Hi Super mum,
Thanks a lot for actually stepping in to answer everything in so much detail.
This gives me a chance to clarify upon few things.
1) Between the year 2003 and 2011 and uptil now, i should say that all the neurological functions, right from thinking, concentration, clarity of mind, taste, touch sensation and fatigue have progressed very very slowly, but they progressed.There was time in 2011 when i used to feel very light tremors too and wekaness in my legs and hands still continue actually. After having B12 injections, only my pins and needles has gone. All the loss of touch and every other sypmtoms remained.
2) My only worry is, i have tried multivitamins and piracetam and pyridoxine during these years, and yet they din't relive me from any symptom, This feature of no going symptoms, is that which worries me a lot. I mean they stay back inspite of medications and keep progressing at snails pace.
3) And Vit D was actually given to me by my neurologist. When i went to him in 2011, i complained of body aches. So he thought i better get tested for it.
4) The MRI in 2012 was given to me by the same doctor, when i complained of forgetting, slowness of thinking and feeling tired.
As i said, all the symptoms of Brain fog and other perceptions loss are still with me, and won't heal. So this is making me go mad and read a lot about MS.
The MRI brain in 2014 is a great relief though.
And thanks a lot to all pals over here, who provided great answers. That relieves me a lot.
But i still have the task of nailing down the cause of my symptoms which are affecting my life. I lost my job in 2013, because of slow work. I was academically very bright until 2003. This sluggish brain, i have to get over it somehow.
Thanks once again for such a valuable time of yours. Have a nice day everyone.
Thanks a lot for actually stepping in to answer everything in so much detail.
This gives me a chance to clarify upon few things.
1) Between the year 2003 and 2011 and uptil now, i should say that all the neurological functions, right from thinking, concentration, clarity of mind, taste, touch sensation and fatigue have progressed very very slowly, but they progressed.There was time in 2011 when i used to feel very light tremors too and wekaness in my legs and hands still continue actually. After having B12 injections, only my pins and needles has gone. All the loss of touch and every other sypmtoms remained.
2) My only worry is, i have tried multivitamins and piracetam and pyridoxine during these years, and yet they din't relive me from any symptom, This feature of no going symptoms, is that which worries me a lot. I mean they stay back inspite of medications and keep progressing at snails pace.
3) And Vit D was actually given to me by my neurologist. When i went to him in 2011, i complained of body aches. So he thought i better get tested for it.
4) The MRI in 2012 was given to me by the same doctor, when i complained of forgetting, slowness of thinking and feeling tired.
As i said, all the symptoms of Brain fog and other perceptions loss are still with me, and won't heal. So this is making me go mad and read a lot about MS.
The MRI brain in 2014 is a great relief though.
And thanks a lot to all pals over here, who provided great answers. That relieves me a lot.
But i still have the task of nailing down the cause of my symptoms which are affecting my life. I lost my job in 2013, because of slow work. I was academically very bright until 2003. This sluggish brain, i have to get over it somehow.
Thanks once again for such a valuable time of yours. Have a nice day everyone.
have to agree with Kyle and JJ, I don't see MS in it, especially PPMS.
Many of us have taken years to prove our diagnosis and gone thru several neurologists and many tests.
Hope we have helped, as Kyle says, we are not drs, just MS patients
Many of us have taken years to prove our diagnosis and gone thru several neurologists and many tests.
Hope we have helped, as Kyle says, we are not drs, just MS patients
Hi Anand -
I'm not a doctor, but I do not think you have PPMS, or any other form of MS.
As JJ mentioned, your symptoms are not screaming MS to me. Over the course of your stated time frame you would likely have had at least one fairly dibilitating relapse. I mean not having the strength to get off tghe couch, major vision issues, the inability to walk in a straight line etc., etc.
You may have some peripheral nerve issues, but it does not sound like MS to me.
Kyle
I'm not a doctor, but I do not think you have PPMS, or any other form of MS.
As JJ mentioned, your symptoms are not screaming MS to me. Over the course of your stated time frame you would likely have had at least one fairly dibilitating relapse. I mean not having the strength to get off tghe couch, major vision issues, the inability to walk in a straight line etc., etc.
You may have some peripheral nerve issues, but it does not sound like MS to me.
Kyle
COMMUNITY LEADER
Hi and welcome,
I've not had a chance to respond to your pm and post sooner sorry but to be totally honest, I'm not really sure how you got on to the idea of PPMS (one of the rarer forms of MS), because there's nothing that you've mentioned that would actually lead 'me' to think MS would be a possible explanation.
You are assuming everything is connected and tracing your issues back over 10 years to when you were a teenager but you have a very long, non eventful period between your noted issues (2003-4 to 2011) and it could just as easily of been a viral infection from what you've described back in 2003-4.
The next issue you mention is more recent and skipping to 2011, though you don't say what symptoms prompted the blood test to find the low vit D and with estimates of approx 1/3 of the general population having low Vit D it's pretty common and not suggestive of any disease in particular.
In 2012 your blood tests show that you are vit B deficient, which is not uncommon for young adults, now responsible for their own diet and life style. It's logical to me that if your sx's of pins and needles improved with vit B treatment, there's no reason to assume it's anything more than vit B deficientcy as the likely causation for what you experienced.
You don't provide any specifics other than "less sensation of touch", which lead to getting the MRI in 2013, but with both your brain and spinal MRI not finding any suggestive brain or spinal lesions, a neurological explanation would usually be very low on your list of potential explanations. You don't mention if your sensation loss, was 'clinically' evident during your neurological tests or if any of your neuro tests showed up abnormal.
2014 your current sx list is IBS, the perception of cognitive decline, sensory loss and experiencing weakness without consequence, which are all fairly generic sx's (none are particularly suggestive of MS) and your latest MRI's are unchanged and also not suggestive of MS.
If you think about it........if you were correct that everything from 2003-2014 is connected, that would mean that even though you'd had MS for over 10 years, you still don't have any MS suggestive diagnostic evidence to date, whilst additionally not having experienced or been diagnosed with any physical abnormality or disability that would typically be suggestive of MS, which from my understanding would be highly unusual and more often mean, MS is one of the least likely explanation above any other.
"I heard this disease can be disabling because of the scars that won't heal." the meaning of Multiple Sclerosis is actually many scars.
I really think that it's going to be in your best interest, to not continue to focus your thoughts on PPMS or even MS in general, there is nothing that 'I' can see that sounds MS-ish, and i believe you would be better off refocusing your thoughts on what you actually know to be true......
Cheers......JJ
I've not had a chance to respond to your pm and post sooner sorry but to be totally honest, I'm not really sure how you got on to the idea of PPMS (one of the rarer forms of MS), because there's nothing that you've mentioned that would actually lead 'me' to think MS would be a possible explanation.
You are assuming everything is connected and tracing your issues back over 10 years to when you were a teenager but you have a very long, non eventful period between your noted issues (2003-4 to 2011) and it could just as easily of been a viral infection from what you've described back in 2003-4.
The next issue you mention is more recent and skipping to 2011, though you don't say what symptoms prompted the blood test to find the low vit D and with estimates of approx 1/3 of the general population having low Vit D it's pretty common and not suggestive of any disease in particular.
In 2012 your blood tests show that you are vit B deficient, which is not uncommon for young adults, now responsible for their own diet and life style. It's logical to me that if your sx's of pins and needles improved with vit B treatment, there's no reason to assume it's anything more than vit B deficientcy as the likely causation for what you experienced.
You don't provide any specifics other than "less sensation of touch", which lead to getting the MRI in 2013, but with both your brain and spinal MRI not finding any suggestive brain or spinal lesions, a neurological explanation would usually be very low on your list of potential explanations. You don't mention if your sensation loss, was 'clinically' evident during your neurological tests or if any of your neuro tests showed up abnormal.
2014 your current sx list is IBS, the perception of cognitive decline, sensory loss and experiencing weakness without consequence, which are all fairly generic sx's (none are particularly suggestive of MS) and your latest MRI's are unchanged and also not suggestive of MS.
If you think about it........if you were correct that everything from 2003-2014 is connected, that would mean that even though you'd had MS for over 10 years, you still don't have any MS suggestive diagnostic evidence to date, whilst additionally not having experienced or been diagnosed with any physical abnormality or disability that would typically be suggestive of MS, which from my understanding would be highly unusual and more often mean, MS is one of the least likely explanation above any other.
"I heard this disease can be disabling because of the scars that won't heal." the meaning of Multiple Sclerosis is actually many scars.
I really think that it's going to be in your best interest, to not continue to focus your thoughts on PPMS or even MS in general, there is nothing that 'I' can see that sounds MS-ish, and i believe you would be better off refocusing your thoughts on what you actually know to be true......
Cheers......JJ
Thanks a lot for taking time to read and reply HVAC.
My symptoms even after 10 years are very mild. And the progress has been very less.
Have done 2 MRI both brain and spine, over last 2 years both of them negative.
And no Vision problem at all.
Do you think that PPMS can still be a contender since i have not had any disabling symptoms. I heard this disease can be disabling because of the scars that won't heal.
My symptoms even after 10 years are very mild. And the progress has been very less.
Have done 2 MRI both brain and spine, over last 2 years both of them negative.
And no Vision problem at all.
Do you think that PPMS can still be a contender since i have not had any disabling symptoms. I heard this disease can be disabling because of the scars that won't heal.
Each case of MS is individual. They usually watch you for at least a year after a MS diagnose to decide if it is PPMS. At the beginning of PPMS changes can be so subtle you do not notice them at all. People usually are diagnosed with PPMS when they are in late 40's early 50's because symptoms do not change much until then. I have PPMS and have had it since I was a child. I was only hospitalized with MS when I was two. Others see the changes in me before I see them for myself. My symptoms stay pretty consistent. I only have old damage to my nervous system so I only see the neurologist every two years. Again each case is different.
Alex
Alex
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It doesn't make sense to drive your self mad reading about MS, when there is no diagnostic or physical evidence or sx's that would put MS on your list........if looking for answers is feeding your anxiety then stop and refocus your thoughts on actually doing something to change your tomorrows!
Try improving your diet, eat health not processed foods, research triggers for your specific digestive issues, understand anxiety/depression, improve your general fitness levels, play cognitive games eg sudoku, cross word, on line games etc improve your self confidence by volunteering, join a club, get involved in something you love doing etc
The point is that no one needs to wait until they have a dx of something serious before they start doing something to improve their now, do what ever it takes to improve your current situation, focus on improving 'you' right now, stop worrying about what it may be and things it more than likely isn't and start doing what you can do, to feel more like your old self. It definitely can't hurt, so get started on re-focusing on improving your health and stop driving your self mad worrying!
Good luck..........JJ