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More and more symptoms, but still wondering..
Hi all, please read this for me.. I still get more and more symptons, and all around but not "so" bad though (I imagine comparing to all of u). So it makes me wonder, is nobody like me out there? Ok, I have told my long version of my story here before, so I try to make this shorter.
I started in june 2010 to get tingeling, numbness in a toe, it went to the other toes and then it started in the other foot, from toes to heal. Pain started around the same time, here and there in the legs (stabbing mostly). In Nov I started feeling a litle pain in my arms (without noticing untill later, that it was so simular). In March tingeling/numbnes in two fingers left side, then all the fingers there and the palm. Little later same on the other side, left side is though worse.
Then in April the left side of my face and my lips, pain (trigger...nerve?) in my right side of face. Then strange chills over my head and wider. Also thinking if when I was travelling this summer and tired, my kids made jokes about my turning words around when speeking does matter? And also tired one time, blurred speach (just for a short time). Now thinking if I should be worried of when eating, stuff going the wrong way sometimes, also just the water in my mouth (don't know the english word) going the wrong way and me then couching?
Was eating some little candy gum (?) the other day and it often feels like the upper part of my neck is tight, and one got stuck like where the tongue ends for awhile? I also now get muscle twitching all around, it was like many snakes in my thie (?) one day, and I also get this in my face and on the top of my head!! But this is not painful, just unconfortable. I have also had painful muscle cramps, but just twice. Also this last month my tongue feels like little burned?
I know that many of these symptoms, is on the MS list, but can it be like this, all around, but still not so bad? Or if this is PPMS does it possibly start mild and the hopefully much much later, gets worse? My tingling is ALWAYS there, everywhere, but sometimes feels worse for awhile. The stabbing pain is not so much for some days and gets worse again, like all of the other symptoms I have gained. I do not have vertigo or eye problems (that I notice) but sometimes my left ear feels like something is in there (for the last days)?? My gait is still ok, but starting to feel a little strange when I walk sometimes (don't know if it is something). All my testing for other stuff has been ok.
Please tell my what you think and if it is possible to have ms that is widespred, but not "so" painful and no vertigo?
My best to you all,
Dagun
I started in june 2010 to get tingeling, numbness in a toe, it went to the other toes and then it started in the other foot, from toes to heal. Pain started around the same time, here and there in the legs (stabbing mostly). In Nov I started feeling a litle pain in my arms (without noticing untill later, that it was so simular). In March tingeling/numbnes in two fingers left side, then all the fingers there and the palm. Little later same on the other side, left side is though worse.
Then in April the left side of my face and my lips, pain (trigger...nerve?) in my right side of face. Then strange chills over my head and wider. Also thinking if when I was travelling this summer and tired, my kids made jokes about my turning words around when speeking does matter? And also tired one time, blurred speach (just for a short time). Now thinking if I should be worried of when eating, stuff going the wrong way sometimes, also just the water in my mouth (don't know the english word) going the wrong way and me then couching?
Was eating some little candy gum (?) the other day and it often feels like the upper part of my neck is tight, and one got stuck like where the tongue ends for awhile? I also now get muscle twitching all around, it was like many snakes in my thie (?) one day, and I also get this in my face and on the top of my head!! But this is not painful, just unconfortable. I have also had painful muscle cramps, but just twice. Also this last month my tongue feels like little burned?
I know that many of these symptoms, is on the MS list, but can it be like this, all around, but still not so bad? Or if this is PPMS does it possibly start mild and the hopefully much much later, gets worse? My tingling is ALWAYS there, everywhere, but sometimes feels worse for awhile. The stabbing pain is not so much for some days and gets worse again, like all of the other symptoms I have gained. I do not have vertigo or eye problems (that I notice) but sometimes my left ear feels like something is in there (for the last days)?? My gait is still ok, but starting to feel a little strange when I walk sometimes (don't know if it is something). All my testing for other stuff has been ok.
Please tell my what you think and if it is possible to have ms that is widespred, but not "so" painful and no vertigo?
My best to you all,
Dagun
Thank you Carol, for your comment on this. You are all helping my alot and it is "good" to hear that there are peoble having simular symptoms out there. I am obviously not alone with all of you here!
My best to you,
Dagun
My best to you,
Dagun
Nice to hear that you liked it Bob, I guess that there are not so many peoble in this medgroups that have been here :). Maby that will change one day!
I have been all over in USA, both because I have a distance relatives (from when Icelanders fled to USA and Canada in hope for a esyer live around 1890). Most of them live in beautiful Seattle, and also me and my mother we travel alot to USA to buy fabrics for our quiltstore. And I love going to US!
My best,
Dagun
I have been all over in USA, both because I have a distance relatives (from when Icelanders fled to USA and Canada in hope for a esyer live around 1890). Most of them live in beautiful Seattle, and also me and my mother we travel alot to USA to buy fabrics for our quiltstore. And I love going to US!
My best,
Dagun
Hi Dagun... I'm glad you found our little family and joined us... I do hate the reason for this but we are all in it together...
I have PPMS and when my symptoms first started it was all over the place... Like one day in my hand, the next day in my other hand, and so on... At first I didn't have much pain associated with it but it came with a vengance later on...
I have also been diagnosed with RSD and my Neurologist thinks the majority of my pain is because of that... He said if it wasn't for the RSD I probably would have little to no pain...
I'm not sure I agree with him on that one because I suffer a great deal from spacticity and I blame that on the MS... I'm glad your doctor is keeping a close eye on you even though it's taking so long... Trust me we have all been down that same road and know what your going through...
Please keep us posted and ask questions any time or just stop in to chat any time...
I'll be praying,
Carol
I have PPMS and when my symptoms first started it was all over the place... Like one day in my hand, the next day in my other hand, and so on... At first I didn't have much pain associated with it but it came with a vengance later on...
I have also been diagnosed with RSD and my Neurologist thinks the majority of my pain is because of that... He said if it wasn't for the RSD I probably would have little to no pain...
I'm not sure I agree with him on that one because I suffer a great deal from spacticity and I blame that on the MS... I'm glad your doctor is keeping a close eye on you even though it's taking so long... Trust me we have all been down that same road and know what your going through...
Please keep us posted and ask questions any time or just stop in to chat any time...
I'll be praying,
Carol
Nei, ég er ekki vandvirkur í íslensku. Það er ódýr stofu bragð .... Ég veit hvernig á að nota Google þýðandi. :-) Glad ég lét þig brosa.
Funny, but my neurologist talks about your ancestral neighbors, the Vikings, as an analogy to the periventricular area. You can see my mri pic and the explanation from him at
http://www.medhelp.org/user_photos/show/68208?personal_page_id=865800
yes, the MS can affect one area of the body much worse than other body parts.
be well,
Lulu
Funny, but my neurologist talks about your ancestral neighbors, the Vikings, as an analogy to the periventricular area. You can see my mri pic and the explanation from him at
http://www.medhelp.org/user_photos/show/68208?personal_page_id=865800
yes, the MS can affect one area of the body much worse than other body parts.
be well,
Lulu
Hæ Lulu,
Þú ert bara dugleg í Íslenskunni ;-) .You made me smile, BIG TIME, with your kind Icelandic words! You have to visit Iceland some day! It is so beautiful in so different way, from other beautiful countries.
Thank you so very much for this, I did not know this about the periventricular area. So this is then some kind of lesions? It feels good to know a little more, I would so much like to know if peoble can have all of these symptoms all around and still have "mild" pain.
Because I think most of the stuff I have read about, peoble get very bad in some "areas" left side, one hand and so on. Then I am wondering if the damaging of the myelin could act like this?
Takk kærlega fyrir að hjálpa mér :)!
Bestu kveðjur,
Dagun
Þú ert bara dugleg í Íslenskunni ;-) .You made me smile, BIG TIME, with your kind Icelandic words! You have to visit Iceland some day! It is so beautiful in so different way, from other beautiful countries.
Thank you so very much for this, I did not know this about the periventricular area. So this is then some kind of lesions? It feels good to know a little more, I would so much like to know if peoble can have all of these symptoms all around and still have "mild" pain.
Because I think most of the stuff I have read about, peoble get very bad in some "areas" left side, one hand and so on. Then I am wondering if the damaging of the myelin could act like this?
Takk kærlega fyrir að hjálpa mér :)!
Bestu kveðjur,
Dagun
Hi Lulu,
Thank you for your response (and telling me that my English is excellent ;) when I need some many more words). And yes ofcourse I forgot the MRI, yes I have had of my brain, neck and lumbar (when they thought it was just my back, because then the symptoms were only in my legs). MRI of the brain showed something that is difficult to transelate from Icelandic, "periventriculer bright changes" =lesions? But very litle, my doctor said it did not tell him so much? I thought maby polyneuropathy or some neuropathy, but my EMG were ok, and I do not have diabetes, I don't drink or smoke. At this point I just want a name for this, so I can now what I am dealing with!!
Thank you so much for taking the time, my best to you!
Dagun
Thank you for your response (and telling me that my English is excellent ;) when I need some many more words). And yes ofcourse I forgot the MRI, yes I have had of my brain, neck and lumbar (when they thought it was just my back, because then the symptoms were only in my legs). MRI of the brain showed something that is difficult to transelate from Icelandic, "periventriculer bright changes" =lesions? But very litle, my doctor said it did not tell him so much? I thought maby polyneuropathy or some neuropathy, but my EMG were ok, and I do not have diabetes, I don't drink or smoke. At this point I just want a name for this, so I can now what I am dealing with!!
Thank you so much for taking the time, my best to you!
Dagun
Hi dagun and welcome to this great group of people.
I've read your symptoms and the all over progression of what you describe sounds neurological to me, but doesn't necessarily fit the pattern of MS. But as you now, there often is no pattern to typical MS.
Yes, MS can be a disease with little or no pain. That is my case for now - I am definitely MS but don't have the problems so many people here experience (at least not yet!). But I am also on a DMD that is supposed to slow my progression.
There are so many other diseases that you should be tested for, And the one test that jumps out at me that you don't mention is an MRI. Have you had one done and what were the results?
Your English is excellent , by the way. I would love to visit Iceland some day and experience the wonders of your country.
be well,
Lulul
I've read your symptoms and the all over progression of what you describe sounds neurological to me, but doesn't necessarily fit the pattern of MS. But as you now, there often is no pattern to typical MS.
Yes, MS can be a disease with little or no pain. That is my case for now - I am definitely MS but don't have the problems so many people here experience (at least not yet!). But I am also on a DMD that is supposed to slow my progression.
There are so many other diseases that you should be tested for, And the one test that jumps out at me that you don't mention is an MRI. Have you had one done and what were the results?
Your English is excellent , by the way. I would love to visit Iceland some day and experience the wonders of your country.
be well,
Lulul
Thank you so much for your answer, but as you see in the text to Alex, I have been in all kind of tests. Just like you I am in Limboland :(. Hope you will find something out soon, good luck to you!
My best,
Dagun
My best,
Dagun
My neuro did those tests, my eyes are normal, my walking still "looks" normal (even though I am starting to feel strange sometimes) reflexes are no good, EMG was ok. And I don't have B12, diabetes or anything that you can see in a bloodsample. My bloodpressure is very good. So what I need from you guys is to know if it CAN possibly happen like this, all over the body? Even though it is not "so" bad yet, I know I have a high tolarence (?) for pain, but it seems so strange to have more and more symptoms but still no falling, vertigo, or eyeproblem. I am forgetting things, and having problem concentrading.
Do you think it might have started so mild with you? Before you then started to be so bad that you went to the doctor?
Here in Iceland there dont seem to be so many PPMS-ers, I have spoken to the MS center here and they did not know of anyone I could talk to. This is such a small country that everyone nows everything, we are just 300,000. My doctor wich is a MS specialist is nearly 80 years old an does not use a computer, but he is a very clever doctor. I want's me to come every 6 months for now, but he does not know much about PPMS exept that he said that it would be clear from now, because he thinks that peoble who have that will die in a year or so!! So wrong as you would know!! Maby if he would use a computer he could read more about this. So I just think, that because they do not have experience of many PPMS peoble here, it will take them longer to figure me out?
Thank you so much,
Dagun
Do you think it might have started so mild with you? Before you then started to be so bad that you went to the doctor?
Here in Iceland there dont seem to be so many PPMS-ers, I have spoken to the MS center here and they did not know of anyone I could talk to. This is such a small country that everyone nows everything, we are just 300,000. My doctor wich is a MS specialist is nearly 80 years old an does not use a computer, but he is a very clever doctor. I want's me to come every 6 months for now, but he does not know much about PPMS exept that he said that it would be clear from now, because he thinks that peoble who have that will die in a year or so!! So wrong as you would know!! Maby if he would use a computer he could read more about this. So I just think, that because they do not have experience of many PPMS peoble here, it will take them longer to figure me out?
Thank you so much,
Dagun
Hello. I am so sorry you are going through so much. I know the feeling of having so many similar symptoms of MS and not knowing if that's what it is. Have you seen a neurologist yet? They will most likely want you to have some blood tests to rule out other diseases first before considering MS as a diagnosis. The process is very long and frustrating for some, and others it can be quick.
My personal opinion probably wouldn't make too much of a difference since I am in the same boat as you. I am going back and forth right now with either MS or Lyme disease.
I hope you find a really good neuro. because that is the most important. Make sure that he/she listens to you and does not make you feel like you are crazy or you have anxiety. If they say that, then find a new neuro. Some people go through alot of neuros. because their symptoms are brushed off as anxiety, or depression.
Yes, you can become depressed with having a disease, whether it be MS or something else, but, it's not always the reason you feel numb, or twitchy, and painful spasms that are debilitating
Good luck to you,
Pam
My personal opinion probably wouldn't make too much of a difference since I am in the same boat as you. I am going back and forth right now with either MS or Lyme disease.
I hope you find a really good neuro. because that is the most important. Make sure that he/she listens to you and does not make you feel like you are crazy or you have anxiety. If they say that, then find a new neuro. Some people go through alot of neuros. because their symptoms are brushed off as anxiety, or depression.
Yes, you can become depressed with having a disease, whether it be MS or something else, but, it's not always the reason you feel numb, or twitchy, and painful spasms that are debilitating
Good luck to you,
Pam
There are many things neurological and not which could cause the symptoms you describe. It really would be hard to say. I know that is not a satisfactory answer.
A lot would depend on your basic neurological tests, reflexes, following a flash light or finger with your eyes, walking, etc. to say whether it was neurological. I failed all those tests which is how I got sent to a neurologist in the first place by my general doctor. Then if it is neurological it may not be MS. It may take a while to sort it out.
Alex
A lot would depend on your basic neurological tests, reflexes, following a flash light or finger with your eyes, walking, etc. to say whether it was neurological. I failed all those tests which is how I got sent to a neurologist in the first place by my general doctor. Then if it is neurological it may not be MS. It may take a while to sort it out.
Alex
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Periventricular bright changes indicate that the MRI showed abnormal activity in the periventricular area of the brain, which is prime real estate for MS. The classic location for MS lesions is in the periventricular area.
Bright spots can occur for other reasons, but you probably already know this.
I find it encouraging that the doctor wants to follow you every six months - that is the standard procedure here in the US as well. It tells me that your doctor suspects something, but doesn't have all the evidence quite yet. You are right to ignore his comment about PPMS causing a quick death - that is very far from the truth. There is a very rare form of MS that is quickly fatal, but it is extremely rare.
Ég vona að þú mun heimsækja hér oft og deila meira á þína sögu.
best,
Lulu