Aa
Ok...now I am a little scared...any insight???
Ok, I have been having this problem for about 4 months. I have been smelling things that are not there and my husband doesn't smell anything and I have finally got up the nerve to investigate and I don't like what I have found.
It started after our vacation in May...when we got home, I could smell a strong smell of garbage in the kitchen, off and on for about 1 1/2 weeks. I went through every cupboard, every drawer, washed everything including the garbage can (before and after we went on vacation) and nothing but time would get rid of this smell. I even had hubby check the pipes under the sink and check the trap in the plumbing...nothing and of course he thought I was nuts cause HE couldn't smell anything! So, that one went away but I have had several short bouts with this over the last couple of months but lately it seems to happen regularly...especially when I am in the shower. At times when I put the shampoo in my hand, it smells really strong of ammonia and it even takes my breath away like ammonia is wont to do but if I have a shower the next day there is no smell of ammonia. Sometimes again in the shower, once I turn off the water and am drying off I can smell different food smells...the other day it was Chinese food (ginger, soya sauce) and yesterday it was a strong smell of boiling cabbage! It only lasts a minute or two but it is really overwhelming and then it just disappears! I have asked hubby to come and check it out but he notices nothing and I have gotten angry because it is so real to me and he honestly doesn't get it!
It started after our vacation in May...when we got home, I could smell a strong smell of garbage in the kitchen, off and on for about 1 1/2 weeks. I went through every cupboard, every drawer, washed everything including the garbage can (before and after we went on vacation) and nothing but time would get rid of this smell. I even had hubby check the pipes under the sink and check the trap in the plumbing...nothing and of course he thought I was nuts cause HE couldn't smell anything! So, that one went away but I have had several short bouts with this over the last couple of months but lately it seems to happen regularly...especially when I am in the shower. At times when I put the shampoo in my hand, it smells really strong of ammonia and it even takes my breath away like ammonia is wont to do but if I have a shower the next day there is no smell of ammonia. Sometimes again in the shower, once I turn off the water and am drying off I can smell different food smells...the other day it was Chinese food (ginger, soya sauce) and yesterday it was a strong smell of boiling cabbage! It only lasts a minute or two but it is really overwhelming and then it just disappears! I have asked hubby to come and check it out but he notices nothing and I have gotten angry because it is so real to me and he honestly doesn't get it!
Hi Rena
I saw this when you posted but was not up to writing .. Sorry I didn't comment.
I've had this for eight yrs. and didn't realize it was anything .
I'll start with the resent stuff.. Two yrs ago a bought my house and moved in and almost right away I could smell something bad. I checked everywhere.I had a plumber come out , he even went under the house ..NOTHING ! Whenever a friend , or stranger would come in I'd ask if they could smell it and no one ever did ..
I was starting to feel like an idiot but I did call another plumber and he said, ' Lady , I have a very sensitive smeller and there is nothing here ' . So I gave up and after awhile it did fade.
About three days ago I started to smell vanilla, that tuned to a vanilla/cake mix but by yesterday it was an astringent odor. Its really strong today. And yes in the shower it was heavy.. I have had THIS smell happening since 2000. When I get a very bad cold it shows up immediately after and lasts two to three wks.. .. so maybe four or five times ... This time I did not have a cold ??
So it has to do with the MS..?? OK , we can have a relapse after a cold .. Why would I always have the same thing and the same smell. And now just the astringent cr@p..( Its very annoying and hard to deal with , its constant) Is this a relapse for me .? Hhhmmm.. very interesting.
So you are not alone.. I'll have to try and find the other post that was mentioned.
How were the White Russians.... I sure hope it took the edge off.. Crazy doctors. ( no offense Quix)
Love and light
Jo
I saw this when you posted but was not up to writing .. Sorry I didn't comment.
I've had this for eight yrs. and didn't realize it was anything .
I'll start with the resent stuff.. Two yrs ago a bought my house and moved in and almost right away I could smell something bad. I checked everywhere.I had a plumber come out , he even went under the house ..NOTHING ! Whenever a friend , or stranger would come in I'd ask if they could smell it and no one ever did ..
I was starting to feel like an idiot but I did call another plumber and he said, ' Lady , I have a very sensitive smeller and there is nothing here ' . So I gave up and after awhile it did fade.
About three days ago I started to smell vanilla, that tuned to a vanilla/cake mix but by yesterday it was an astringent odor. Its really strong today. And yes in the shower it was heavy.. I have had THIS smell happening since 2000. When I get a very bad cold it shows up immediately after and lasts two to three wks.. .. so maybe four or five times ... This time I did not have a cold ??
So it has to do with the MS..?? OK , we can have a relapse after a cold .. Why would I always have the same thing and the same smell. And now just the astringent cr@p..( Its very annoying and hard to deal with , its constant) Is this a relapse for me .? Hhhmmm.. very interesting.
So you are not alone.. I'll have to try and find the other post that was mentioned.
How were the White Russians.... I sure hope it took the edge off.. Crazy doctors. ( no offense Quix)
Love and light
Jo
I've often wondered about the smell thing. I smell lots of things which apparently aren't there, or hubby can't smell. Doesn't mean they aren't there. I think my sniffer must be hyper-acute. Or I've got some infolvement of my olfactory nerve. I already know my neck is numb, and my face is numb, so there's some cranial nerves affected.
Thankyou so much for answering my questions. As to the smells...they are almost always different so I guess you are right and they are paresthesias (thank goodness I guess...better them than seizures right?)
The speech thing is strange...I don't recall the "non-word" words coming out at the neuro/psych testing though. Maybe because I was answering direct questions and not coming out with random thoughts at random times perhaps??? Who knows...maybe Rebeccah can help here...I would sure appreciate her input!
I have tried to make an appointment and have been told to refer back to my gp and that my gp will have to send a referral letter stating any issues I am having and then perhaps if the neurologist feels the need to see you personally then an appointment will be made at her discretion. Grrrrrrrr...So I did ask my gp to refer me back to dr. evil and that was in July...I called at the first of September to see if there was a letter sent to dr. evil and the receptionist told me that a letter had been started with the evil dr.'s name but that was all that was on the piece of paper in my file...the letter was never sent! I shouldn't be surprised considering I waited for a referral to be sent to the pulmonologist for 5 months during which she told me multiple times it had been sent but in fact was not sent until 5 months later. Turns out my CT Scan showed emphysema and I need to go to a lung health clinic for 8 weeks, twice a week to try to treat the problem and help me out. It's a good thing it wasn't anything more serious than that eh?! So when I found out that she hadn't sent it I figured that I may as well wait until I get the results from the neuro/psych and perhaps the psychologist will refer me to a Neurologist...stranger things have happened to other people I am sure don't ya think? My gp stated that she would refer me for a neuro/psych consult in January 2008 and the letter wasn't sent until May 2008 and I only had the test on September 18th...five months to send the letter and only four months to get the test...something wrong here wouldn't ya say?
Again, thanks for your input Quix...it is much appreciated! How are you feeling by the way...no after effects from the tests last week I hope.
Hugs,
Rena
The speech thing is strange...I don't recall the "non-word" words coming out at the neuro/psych testing though. Maybe because I was answering direct questions and not coming out with random thoughts at random times perhaps??? Who knows...maybe Rebeccah can help here...I would sure appreciate her input!
I have tried to make an appointment and have been told to refer back to my gp and that my gp will have to send a referral letter stating any issues I am having and then perhaps if the neurologist feels the need to see you personally then an appointment will be made at her discretion. Grrrrrrrr...So I did ask my gp to refer me back to dr. evil and that was in July...I called at the first of September to see if there was a letter sent to dr. evil and the receptionist told me that a letter had been started with the evil dr.'s name but that was all that was on the piece of paper in my file...the letter was never sent! I shouldn't be surprised considering I waited for a referral to be sent to the pulmonologist for 5 months during which she told me multiple times it had been sent but in fact was not sent until 5 months later. Turns out my CT Scan showed emphysema and I need to go to a lung health clinic for 8 weeks, twice a week to try to treat the problem and help me out. It's a good thing it wasn't anything more serious than that eh?! So when I found out that she hadn't sent it I figured that I may as well wait until I get the results from the neuro/psych and perhaps the psychologist will refer me to a Neurologist...stranger things have happened to other people I am sure don't ya think? My gp stated that she would refer me for a neuro/psych consult in January 2008 and the letter wasn't sent until May 2008 and I only had the test on September 18th...five months to send the letter and only four months to get the test...something wrong here wouldn't ya say?
Again, thanks for your input Quix...it is much appreciated! How are you feeling by the way...no after effects from the tests last week I hope.
Hugs,
Rena
I read through half of this thread so that I could get some sort of answer to you.
One - I believe that what you are experiencing is paresthesias of the olfactory nerve which is the second cranial nerve. It also takes up a huge amount of the brain for it's processing. This would be due to your MS. And it would account for the variety of smells you are experiencing. And I never meant to say that only unpleasant smells could be paresthesias. I just meant to say that it "seems" that they are always unpleasant. There is no reason they would have to be.
If the smells were due to a temporal lobe seizure, now known as complex seizures, it would always be the same smell. I think you can probably erase that worry. This is because a seizure arises from the same exact spot in the brain every time. The aura of complex seizures is almost always the same within the same person. Within the whole population they can be anything at all.
Your Rena-speech is also a direct effect of your MS. MS can affect any part of speaking, from formulating the language in the brain to the direction of the oral muscles to speak ot (speech). We'll consult Rebeccah (Speechgeek) about what happens when our intent to speak real words ends up in "jargon." It can show up with the inability to speak at all, or the inability to find any words, to stuttering, to using wrong words to using non-words.
Without access to a neurologist that will treat you, this is a difficult problem. I still think you are going to have to travel out of province to find a Dr that will deal with you. By the way, have you ever tried to reach Dr. Evil and tell her about these new things? Do you think she might change her tune?
Quix
One - I believe that what you are experiencing is paresthesias of the olfactory nerve which is the second cranial nerve. It also takes up a huge amount of the brain for it's processing. This would be due to your MS. And it would account for the variety of smells you are experiencing. And I never meant to say that only unpleasant smells could be paresthesias. I just meant to say that it "seems" that they are always unpleasant. There is no reason they would have to be.
If the smells were due to a temporal lobe seizure, now known as complex seizures, it would always be the same smell. I think you can probably erase that worry. This is because a seizure arises from the same exact spot in the brain every time. The aura of complex seizures is almost always the same within the same person. Within the whole population they can be anything at all.
Your Rena-speech is also a direct effect of your MS. MS can affect any part of speaking, from formulating the language in the brain to the direction of the oral muscles to speak ot (speech). We'll consult Rebeccah (Speechgeek) about what happens when our intent to speak real words ends up in "jargon." It can show up with the inability to speak at all, or the inability to find any words, to stuttering, to using wrong words to using non-words.
Without access to a neurologist that will treat you, this is a difficult problem. I still think you are going to have to travel out of province to find a Dr that will deal with you. By the way, have you ever tried to reach Dr. Evil and tell her about these new things? Do you think she might change her tune?
Quix
I would really appreciate it if you could read this over... I know it's a lot to ask if you are not feeling well and if that is the case...well don't worry about it. I am concerned about the Renaspeech...boobagingycolgo...(that's Renaspeech that happens here and there all day usually) and the smells (I could smell hay this morning in the kitchen...sweet fresh hay and I am in the middle of the city...no hay around here!). Strange happenings but I guess I should just get used to it and hope it goes away??? Who knows...not feeling particularly optimistic at the moment...kinda down and whatever attitude I guess you could call it.
Hugs, Rena
Hugs, Rena
I have to take some time to read this whole thread. I'll try to get to it tomorrow.
Q
Q
I am glad I could help, all of you are always helping me, and stood by me the last couple of weeks with the scare we're going through with Beth.
Knowing you are keeping us in your prays has helped keep me from that dark place. That's what friends are for..comfort, strength, support, someone to listen to our fears...etc., etc., etc.
I'm always here, dear friend, never hesitate when you need me!!
Hugs
doni
Knowing you are keeping us in your prays has helped keep me from that dark place. That's what friends are for..comfort, strength, support, someone to listen to our fears...etc., etc., etc.
I'm always here, dear friend, never hesitate when you need me!!
Hugs
doni
I can appreciate what you are saying about seeing a professional about this but there doesn't seem to be any in a 50 mile radius of my brain! hehe
It's not that I go blank when shopping...what I want to say is there...it just comes out as complete jibberish that no one could understand. I did have some trouble back in early spring where I would forget where I was and that sort of thing but that has rectified itself and now it's just this inability to speak English...my mother tongue! hehe
I really do appreciate the caring you have shown me doni! It really does help to keep me out of that big black depression hole that is sitting next to me all the time daring me to jump in...I think I was in it up to my waist yesterday but managed to pull myself out somehow and feel quite a bit better so far today!.
Lots of Hugs,
Rena
It's not that I go blank when shopping...what I want to say is there...it just comes out as complete jibberish that no one could understand. I did have some trouble back in early spring where I would forget where I was and that sort of thing but that has rectified itself and now it's just this inability to speak English...my mother tongue! hehe
I really do appreciate the caring you have shown me doni! It really does help to keep me out of that big black depression hole that is sitting next to me all the time daring me to jump in...I think I was in it up to my waist yesterday but managed to pull myself out somehow and feel quite a bit better so far today!.
Lots of Hugs,
Rena
I am glad you feel better today, sweetie. I still think you should talk to a professional about it, though. All of us here want what's best for you.
My speech thing isn't as bad as yours. When I'm having that problem I just can't talk at all, brain doesn't meet the tongue to produce the words.
I can identify and agree on the grocery store. I have had a couple of episodes of going totally blank while grocery shopping. Know I'm in the grocery, but seems I can't articulate where or how to proceed with what I was doing.......scary stuff......been trying not to go by myself or when I do I let hubby know, in case he has to rescue me.....ha...ha....ha.....
I noticed Quixy our mamma bear on here, maybe she will pipe in on this discussion!!
Sending you bunches of hugs and prayers!!
Love ya
doni
My speech thing isn't as bad as yours. When I'm having that problem I just can't talk at all, brain doesn't meet the tongue to produce the words.
I can identify and agree on the grocery store. I have had a couple of episodes of going totally blank while grocery shopping. Know I'm in the grocery, but seems I can't articulate where or how to proceed with what I was doing.......scary stuff......been trying not to go by myself or when I do I let hubby know, in case he has to rescue me.....ha...ha....ha.....
I noticed Quixy our mamma bear on here, maybe she will pipe in on this discussion!!
Sending you bunches of hugs and prayers!!
Love ya
doni
Hey all...ya know...it's really interesting that most of us here want to apply any of the symptoms I have to "the MS". I find this interesting because if all of these symptoms are related to "the MS" why doesn't any of the doctors see this.
I mean there have been a lot of strange symptoms including this smelling things that are not there and this strange sound that comes out of my mouth when I know in my mind what I want to say but it comes out as garbled junk.
I have calmed down somewhat from yesterday and reasoned that these smells could very well be related to the MS...so what good would it do to go to the ER...probably they would do nothing and tell me to see my g.p. or my neurologist. Ya know, even the girls at the lung clinic asked who my neurologist is and when I told them they said "Wow...I have heard that she is really good...I wonder what the problem is?".
I don't think that I have jargon aphasia although it sounds a lot like what happens to me only it doesn't happen all the time. Hubby and I went and got a few groceries after he got home from work last night and this strange "language" came out a lot! I think it is because when you are grocery shopping you have a lot of different ideas going through your head and when I go to speak I am not concentrating on speaking and this junk comes out...for example I planned to say to hubby that we should get some more milk and it came out wouldjimanan...I thought about it for a minute and then tried again and was able to say what I had planned to say in the first place. Weird eh? I don't know, maybe Quix can shed some light on it and in the meantime I am going to wait until I see the neuro/psych results before I go back to the gp.
I sure appreciate all the support that I got yesterday and I hope today is a good one for all including me! hehe I am going to try to help out a bit in the back yard this afternoon and get some fresh air and it's supposed to be really nice for the next week. I will try to get some walking in as well...with hubby supervising of course but I really am going to be careful about my driving. Hubby agreed to keep an extra close eye on things for a while and he is going to be going to the neuropsych results appointment with me so I am hoping she will let him explain what has been happening.
Lots of Hugs,
Rena
I mean there have been a lot of strange symptoms including this smelling things that are not there and this strange sound that comes out of my mouth when I know in my mind what I want to say but it comes out as garbled junk.
I have calmed down somewhat from yesterday and reasoned that these smells could very well be related to the MS...so what good would it do to go to the ER...probably they would do nothing and tell me to see my g.p. or my neurologist. Ya know, even the girls at the lung clinic asked who my neurologist is and when I told them they said "Wow...I have heard that she is really good...I wonder what the problem is?".
I don't think that I have jargon aphasia although it sounds a lot like what happens to me only it doesn't happen all the time. Hubby and I went and got a few groceries after he got home from work last night and this strange "language" came out a lot! I think it is because when you are grocery shopping you have a lot of different ideas going through your head and when I go to speak I am not concentrating on speaking and this junk comes out...for example I planned to say to hubby that we should get some more milk and it came out wouldjimanan...I thought about it for a minute and then tried again and was able to say what I had planned to say in the first place. Weird eh? I don't know, maybe Quix can shed some light on it and in the meantime I am going to wait until I see the neuro/psych results before I go back to the gp.
I sure appreciate all the support that I got yesterday and I hope today is a good one for all including me! hehe I am going to try to help out a bit in the back yard this afternoon and get some fresh air and it's supposed to be really nice for the next week. I will try to get some walking in as well...with hubby supervising of course but I really am going to be careful about my driving. Hubby agreed to keep an extra close eye on things for a while and he is going to be going to the neuropsych results appointment with me so I am hoping she will let him explain what has been happening.
Lots of Hugs,
Rena
Hon, I understand why you are feeling afraid. When something new comes up it is always quite unsettling but I do agree with doni that you should see a doc about this. Maybe just go to the ER if you don't want to deal with the twits that you have been.
You will only just work yourself up and cause yourself more anxiety letting this ride without getting it checked out.
I'm just so sorry this is going on with you. You know my thoughts are always with you.
Love ya
Big Hugs
Moki
You will only just work yourself up and cause yourself more anxiety letting this ride without getting it checked out.
I'm just so sorry this is going on with you. You know my thoughts are always with you.
Love ya
Big Hugs
Moki
Hey Girlfriend!!
I'm sorry this is making you afraid and you have already been through so much. Try not to let yourself get too upset before you see a dr about this. I know your experience with drs, especially your evil GP, haven't been great, but I think you need to have this checked out.
I am not dx, but I am always smelling things, good & bad, that the rest of the family doesn't smell. I can remember this discussion on here before and yes, Quix mentioned it having something to do with MS.
I understand your concern about the seizures and also understand about the research you found about this. I just don't want you to upset yourself before you find out for sure. I'm a good one to talk, huh, been losing my feeble mind over this mess with Beth. I just worry about you and all this stress you are already dealing with.
I'm here for you and hope that this is just part of the MS, like the little mouses we all see from time to time. I'll be praying for you, sweetheart, take care of yourself.
Love & Hugs
doni
I'm sorry this is making you afraid and you have already been through so much. Try not to let yourself get too upset before you see a dr about this. I know your experience with drs, especially your evil GP, haven't been great, but I think you need to have this checked out.
I am not dx, but I am always smelling things, good & bad, that the rest of the family doesn't smell. I can remember this discussion on here before and yes, Quix mentioned it having something to do with MS.
I understand your concern about the seizures and also understand about the research you found about this. I just don't want you to upset yourself before you find out for sure. I'm a good one to talk, huh, been losing my feeble mind over this mess with Beth. I just worry about you and all this stress you are already dealing with.
I'm here for you and hope that this is just part of the MS, like the little mouses we all see from time to time. I'll be praying for you, sweetheart, take care of yourself.
Love & Hugs
doni
rena,
we need speechgeek:)
not to be connfused withh speech, the language comes in a couple areas. I think it is 'werniek (sp))area? I could have them very backwards.
goole 'jargon aphsia'
yes ii have improved very much.
I did have extennnsive speech terapy few years back. Lee Silverman Technique. While it focus on speecha nd swallowing, not language.
I thought i was going crazy till I searched myself learning . My doctors never said i has aphsia of any sort,, whichh thinking allways funny they did not. It was extremely obviously.
I know self dx's can be dangeous, but sometimes that's all we get, right???
keep faith!, amo
we need speechgeek:)
not to be connfused withh speech, the language comes in a couple areas. I think it is 'werniek (sp))area? I could have them very backwards.
goole 'jargon aphsia'
yes ii have improved very much.
I did have extennnsive speech terapy few years back. Lee Silverman Technique. While it focus on speecha nd swallowing, not language.
I thought i was going crazy till I searched myself learning . My doctors never said i has aphsia of any sort,, whichh thinking allways funny they did not. It was extremely obviously.
I know self dx's can be dangeous, but sometimes that's all we get, right???
keep faith!, amo
Rena, no suggestions, only to add that I too have trouble with speech... I used to just have trouble slurring my words, but in the past month, i have a lot more trouble with either having times in the day where nothing will come out and all i can say is 'aaaaa' or simply talking gibberish with none of the words sounds like words. So far, i and my family just laugh it off, but it can get really bad when I'm very tired, I can barely communicate.
~Sunnytoday~
~Sunnytoday~
Thank you for your understanding honey...ya know, I have had a problem with my speech since last July and I have had one MRI done by the last bonehead neuro and there was no mention of the temporal lobe at that time. There has been no mention of it with the gp. There was no mention of it from the evil neuro.
Perhaps there will be mention of it by the neuro/psychologist???
I get caught alot on D's and M's but I am going to have to have hubby pay more attention to what the other deficits are (such as ending everything with "it").
So what did they find was the cause of your language problems amo? Is it related to the MS or is it something else? Has it gotten better and if so did you have to have speech therapy? I don't have this problem all the time as I have said before...mainly when I am fatigued or under stress or caught off guard...hmmm...I guess it's anybody's guess isn't it??? Any ideas honey???
Lots of Hugs,
Rena
Perhaps there will be mention of it by the neuro/psychologist???
I get caught alot on D's and M's but I am going to have to have hubby pay more attention to what the other deficits are (such as ending everything with "it").
So what did they find was the cause of your language problems amo? Is it related to the MS or is it something else? Has it gotten better and if so did you have to have speech therapy? I don't have this problem all the time as I have said before...mainly when I am fatigued or under stress or caught off guard...hmmm...I guess it's anybody's guess isn't it??? Any ideas honey???
Lots of Hugs,
Rena
Thank you so much for your compassion Kathy...I feel so out of sorts today and yesterday was not better but I knocked it up to fatigue from the last two weeks of busy, busy, busy but I haven't improved any since yesterday.
I haven't had a seizure that I know of since about 1994 and even then the head of the MS Clinic was skeptical as to whether I was really having seizures or not and he felt at that time that if I was indeed having seizure that they could be caused by Rasmussen's chronic encephalitis. However, after having a positive LP, he felt that if I were in fact having seizure that they were related to the diagnosis of MS.
I can feel for you having such a scare while driving! While my license was never revoked, I agreed to not drive for a year and I didn't because I likened it to impaired driving...what right did I have to take a chance of hurting some unsuspecting person? None...so I don't think I will be driving again until I start to feel better at least!
I LOVE the bumper sticker and it should be applied to Edmonton I am sure...with my name on the bumper sticker I am sure by the way I am feeling today.
I just walked next door to give my neighbor a get well gift...we all know that she probably won't get well...she has terminal uterine cancer and is not doing well at all. I gave the the book "Chicken Soup for the Dog Lover's Soul" and I hope that if she can't read it that someone in the family will. I know that it helped me when I was sooo sick last July and it's short stories were perfect cause you don't have to try to remember where you left off. I hope she gets at least a few smiles out of it as I did. She was sleeping when I went over but I let her family know that although I can't do much care giving, if they need to go out to let me know and at least I could go sit with her. I guess we do what we can don't we?
Thanks for your kindness Kathy...it sure comes in handy for me on a regular basis! hehe
Lots of Hugs,
Rena
I haven't had a seizure that I know of since about 1994 and even then the head of the MS Clinic was skeptical as to whether I was really having seizures or not and he felt at that time that if I was indeed having seizure that they could be caused by Rasmussen's chronic encephalitis. However, after having a positive LP, he felt that if I were in fact having seizure that they were related to the diagnosis of MS.
I can feel for you having such a scare while driving! While my license was never revoked, I agreed to not drive for a year and I didn't because I likened it to impaired driving...what right did I have to take a chance of hurting some unsuspecting person? None...so I don't think I will be driving again until I start to feel better at least!
I LOVE the bumper sticker and it should be applied to Edmonton I am sure...with my name on the bumper sticker I am sure by the way I am feeling today.
I just walked next door to give my neighbor a get well gift...we all know that she probably won't get well...she has terminal uterine cancer and is not doing well at all. I gave the the book "Chicken Soup for the Dog Lover's Soul" and I hope that if she can't read it that someone in the family will. I know that it helped me when I was sooo sick last July and it's short stories were perfect cause you don't have to try to remember where you left off. I hope she gets at least a few smiles out of it as I did. She was sleeping when I went over but I let her family know that although I can't do much care giving, if they need to go out to let me know and at least I could go sit with her. I guess we do what we can don't we?
Thanks for your kindness Kathy...it sure comes in handy for me on a regular basis! hehe
Lots of Hugs,
Rena
hi rena,
I had times with incomprehensiblle languuage.
temporal lobes are direct involve in language.
a pperiod of time ii could noto speek contractions. And always ending sentence withh 'IT". Besides the speeh part, it was language.
I very much understand your saying you know what to say and it comes out jibberish (which i found sometime ago discribed medically, if i fidn it can send)
i am sorry youuu are having a bd day...hang tough rena, amo
I had times with incomprehensiblle languuage.
temporal lobes are direct involve in language.
a pperiod of time ii could noto speek contractions. And always ending sentence withh 'IT". Besides the speeh part, it was language.
I very much understand your saying you know what to say and it comes out jibberish (which i found sometime ago discribed medically, if i fidn it can send)
i am sorry youuu are having a bd day...hang tough rena, amo
You are NOT getting weirder; weird things are happening to you.
No one here will judge you for strange happenings or fears because of them. Let go of your Mom's misunderstanding of what you were going through, and realize that we will help you ride out whatever you are going through.
Have you experienced any seizures since back then? If not, then perhaps the Tegretol is working and your seizures were not in any way related to temperal lobe seizures. I am inclined to think that you are experiencing parasthesias and that is combining with normal MS cog fog (or brain f a r t s) and scaring the heck out of you.
I think that your hubby will be glad to help you keep an eye on yourself. You are very smart to pay attention to what's going on with you and realize that driving isn't a good idea until you figure this out.
When my dizziness was pretty bad, I avoided driving as much as possible. One day I had to go to a doctor's appointment, no one was available to drive me, so I drove myself, since it was only a 15 minute drive each way.
On the way back, going around a sharp curve on the inside of a three lane (on each side) freeway, it felt like the world turned upside down and then right side up. I was stuck in the inside lane in tons of traffic and felt like I was going to barf and couldn't focus my eyes properly. I prayed, breathed deeply, bit my lips, sang out loud, did everything I could to make it safely home.
Now I only fill up my small car's tank once a month, and don't drive if my vertigo is acting up. I could have learned the really hard way; thank heavens I made it home safely!
BTW, haven't I told you that the city where I live has an unofficial slogan, on many bumper stickers; Keep Portland Weird! Weird isn't bad, it's interesting.
Love ya',
Kathy
No one here will judge you for strange happenings or fears because of them. Let go of your Mom's misunderstanding of what you were going through, and realize that we will help you ride out whatever you are going through.
Have you experienced any seizures since back then? If not, then perhaps the Tegretol is working and your seizures were not in any way related to temperal lobe seizures. I am inclined to think that you are experiencing parasthesias and that is combining with normal MS cog fog (or brain f a r t s) and scaring the heck out of you.
I think that your hubby will be glad to help you keep an eye on yourself. You are very smart to pay attention to what's going on with you and realize that driving isn't a good idea until you figure this out.
When my dizziness was pretty bad, I avoided driving as much as possible. One day I had to go to a doctor's appointment, no one was available to drive me, so I drove myself, since it was only a 15 minute drive each way.
On the way back, going around a sharp curve on the inside of a three lane (on each side) freeway, it felt like the world turned upside down and then right side up. I was stuck in the inside lane in tons of traffic and felt like I was going to barf and couldn't focus my eyes properly. I prayed, breathed deeply, bit my lips, sang out loud, did everything I could to make it safely home.
Now I only fill up my small car's tank once a month, and don't drive if my vertigo is acting up. I could have learned the really hard way; thank heavens I made it home safely!
BTW, haven't I told you that the city where I live has an unofficial slogan, on many bumper stickers; Keep Portland Weird! Weird isn't bad, it's interesting.
Love ya',
Kathy
I thank you for the digging you did on this paresthesia and the time you took out of your day to do so Kathy. I am still concerned though because the smells that I deal with are not always unpleasant...i.e. cooking apples, chinese food while other are...i.e. ammonia, dry dog food, wet used SOS pads (really weird), so I just don't know about all of this.
I did have Aura's when I had the seizures back in 1993. They were really weird as well with strange smells and also the sound of a huge crowd of people all talking at the same time in my head! I remember telling Mom about it when I was in high school and she said "oh, don't be so foolish"!! I can imagine at that time she probably thought I was headed for the loonie bin...how was she to know what it was...and again, it usually happened the most while I was in the shower! Ok, I am getting weirder all the time and I recognize this but don't be scared please...I don't think it's catchy! I do know that hubby and I are going to have a long talk tonight about this stuff and I will have him watch me much more closely so that we can keep tract of what is going on.
Hugs,
Rena
I did have Aura's when I had the seizures back in 1993. They were really weird as well with strange smells and also the sound of a huge crowd of people all talking at the same time in my head! I remember telling Mom about it when I was in high school and she said "oh, don't be so foolish"!! I can imagine at that time she probably thought I was headed for the loonie bin...how was she to know what it was...and again, it usually happened the most while I was in the shower! Ok, I am getting weirder all the time and I recognize this but don't be scared please...I don't think it's catchy! I do know that hubby and I are going to have a long talk tonight about this stuff and I will have him watch me much more closely so that we can keep tract of what is going on.
Hugs,
Rena
Hi there,
I remember that Quix listed strange odors as a type of parasthesia; she even made a comment about how it always seems to be unpleasant; why can't it be cinnamon or something nice. I think its in the Health Pages under Parasthesias.
It can just be sensory (smell) nerves sending faulty signals.
I also can understand why you would be worried with the past seizures and the bad doctors, but lets hope its just one more sign that your "inactive" MS is messing with you. You could add it to the list, like some of us have "Did I lock the door? Did I turn off the stove, or iron?" Have someone with a decent sense of smell check out your foul smells before you throw something away.
I have always had an extrememly keen sense of smell; can tell if someone has gum disease from 5 meters away; perfumes about knock me out, etc. I've been known to carry Kleenex to breathe through to cut the odors.
Lately, I've been having friends ask me "Don't you smell that?" and I've had to say no; kind of scary in a different way. Change is frightening with this disease, in or out of limboland, because you don't know the cause and don't know where its leading.
My dear Rena, you've had enough heaped on your plate; lets just decide that this is a purely sensory change until someone else points to some other option. I'm hoping the results of your neuro-psych consult can shed some light on this, and calm some of your fears.
Aha, I found the pertinent paragraph from the parasthesias page! ha ha ha!
"The special senses of sight, smell, hearing and taste may also be affected in MS and cause paresthesias. In Optic Neuritis, a person may see flashing lights, halos, wavy lines, things that appear to scurry round in the peripheal vision. These are paresthesias. If the visual signal is reduced there my be shadows, visual field defects, or diminished color saturation (intensity). The sense of smell may disappear. Or we may have paresthesias of smells that are not there. For some reason these smells are always odd and usually very unpleasant. (why can't we smell cinnamon or lilacs?). Loss of hearing is also not uncommon in MS. Paresthesias of hearing and taste occur, but are less common. "
Love and Hugs,
Kathy
I remember that Quix listed strange odors as a type of parasthesia; she even made a comment about how it always seems to be unpleasant; why can't it be cinnamon or something nice. I think its in the Health Pages under Parasthesias.
It can just be sensory (smell) nerves sending faulty signals.
I also can understand why you would be worried with the past seizures and the bad doctors, but lets hope its just one more sign that your "inactive" MS is messing with you. You could add it to the list, like some of us have "Did I lock the door? Did I turn off the stove, or iron?" Have someone with a decent sense of smell check out your foul smells before you throw something away.
I have always had an extrememly keen sense of smell; can tell if someone has gum disease from 5 meters away; perfumes about knock me out, etc. I've been known to carry Kleenex to breathe through to cut the odors.
Lately, I've been having friends ask me "Don't you smell that?" and I've had to say no; kind of scary in a different way. Change is frightening with this disease, in or out of limboland, because you don't know the cause and don't know where its leading.
My dear Rena, you've had enough heaped on your plate; lets just decide that this is a purely sensory change until someone else points to some other option. I'm hoping the results of your neuro-psych consult can shed some light on this, and calm some of your fears.
Aha, I found the pertinent paragraph from the parasthesias page! ha ha ha!
"The special senses of sight, smell, hearing and taste may also be affected in MS and cause paresthesias. In Optic Neuritis, a person may see flashing lights, halos, wavy lines, things that appear to scurry round in the peripheal vision. These are paresthesias. If the visual signal is reduced there my be shadows, visual field defects, or diminished color saturation (intensity). The sense of smell may disappear. Or we may have paresthesias of smells that are not there. For some reason these smells are always odd and usually very unpleasant. (why can't we smell cinnamon or lilacs?). Loss of hearing is also not uncommon in MS. Paresthesias of hearing and taste occur, but are less common. "
Love and Hugs,
Kathy
Ya know what....this is something else that has been happening for a while. I will start to say something and know what I want to say but absolute jibberish results and spews from my mouth.
For example...I will think to say...I heard that Albert is going on a cruise.
What comes out is ashudneshunsheeeeesmshshsanso...or something very close to that...totally indistinguishable as speech! This has been happening for a while and I just realized that this is not really like the problems I have with slurring and stuttering and word retrieval. I know what I want to say and this is how it comes out!
This doesn't happen all the time mind you...I can't tell you when it is going to happen and I can't say that it is related to anything in particular. It just happens...perhaps when I am pre-occupied with the tv and suddenly want to say something it will come out like this and I have to rethink what I am wanted to say and then I usually still struggle to get it out but that is when hubby starts his "mind-reading" phenomenon and can usually finish what I start to say and can't finish.
Does this happen to anyone else??? Does anyone understand what I am trying to explain? Does anyone know what the heck this might be or could it be related to the MS? Please help me...I feel like I am drowning here all of a sudden and it is darn scary! I know if I go to my gp she will say what she always has "Dr. evil-neuro has stated that your MS is in-active so I don't know what it is" and without having an "attack" of anything how can I justify going to er??? Am I losing it here??
Rena
For example...I will think to say...I heard that Albert is going on a cruise.
What comes out is ashudneshunsheeeeesmshshsanso...or something very close to that...totally indistinguishable as speech! This has been happening for a while and I just realized that this is not really like the problems I have with slurring and stuttering and word retrieval. I know what I want to say and this is how it comes out!
This doesn't happen all the time mind you...I can't tell you when it is going to happen and I can't say that it is related to anything in particular. It just happens...perhaps when I am pre-occupied with the tv and suddenly want to say something it will come out like this and I have to rethink what I am wanted to say and then I usually still struggle to get it out but that is when hubby starts his "mind-reading" phenomenon and can usually finish what I start to say and can't finish.
Does this happen to anyone else??? Does anyone understand what I am trying to explain? Does anyone know what the heck this might be or could it be related to the MS? Please help me...I feel like I am drowning here all of a sudden and it is darn scary! I know if I go to my gp she will say what she always has "Dr. evil-neuro has stated that your MS is in-active so I don't know what it is" and without having an "attack" of anything how can I justify going to er??? Am I losing it here??
Rena
Have an Answer?
You are reading content posted in the Multiple Sclerosis Community
Top Neurology Answerers
Australia
ON
Queensland, Australia
Queen Creek, AZ
Find out how beta-blocker eye drops show promising results for acute migraine relief.
In this special Missouri Medicine report, doctors examine advances in diagnosis and treatment of this devastating and costly neurodegenerative disease.
Here are 12 simple – and fun! – ways to boost your brainpower.
Discover some of the causes of dizziness and how to treat it.
Discover the common causes of headaches and how to treat headache pain.
Two of the largest studies on Alzheimer’s have yielded new clues about the disease
