Aa
New here and have some symptom questions
Hi -Ive read through a number of the posts and a lot sounds like issues I have had off and on since I was in my early 20's. Id appreciate some comments from people who have MS.Most Symptoms that I have had ebb and flow,
one thing for sure they always return and they are only getting greater and worse- ie some spasms in one part of my leg have evolved in extremely painful !!!!! charlie horse type spasms that will leave me having sore muscles for weaks.. I had the spasms in one area, now I have them in several areas of that leg, while the top of my leg feels numb. Just weird weird stuff, Im seriously afraid to tell anyone the extent of my "symptoms". If you think Im nuts please dont tell me, I used to run a number of business and have over average intelligence,and used to be unusally strong when I was younger and was very active, it is hard to learn to be a vegetable.
Some issues I didnt see mentioned , that I have are,
How many people have very loose stools or diarrhea? Ive had it for over 20 years, along with various degrees of urinary incontenence that gets worse when I have a relapse.(I also have very bad diverticulitis , but no constipation.)
How many of you have retinal vasculitis- leaking eye vessels.
How do myotomes and dermotomes relate to MS. ? I had a study on my arm said I have active and chronic nerve root damage, report said my muscles in arm are atrophied. I know when he stuck needles and did the electric stuff I didnt mind because I couldnt feel most of it although my hand was jerking.
My ears ring. Ive had a variety of nerve pains, numbness, dizziness, all sorts of things you name it, Ive had it.
The first nuerologist( director of a big university nuero clinic) I saw about 18 years ago, said I had psycho moto form??ie crazy - so I tried to make myself work harder, but an MRI 2 years later showed I had a completely compressed spinal cord , on neck and back. Ive had 5 surgeries on my back and neck.It did relieve certain symptoms and a lot of pain,but other issues remained and continue to progress and get worse..
Im afraid to go to my upcoming neuro appt since the last time the dr, just made fun of me. and didnt even bother to
give me the benefit of the doubt and do an MRI.
More recently I went to a reumatologist becuase I havent been to one in ovr 10 years, who said I didnt have anything like lupus, because I had no REAL positive tests- of ANA, etc but only positive CRP, sedrate,
the retilinal vaculitis, etc dont mean anything and that it could just be because Im overweight.
Now my mind is starting to go, memory is bad, dont want to talk because loosing words, cant keep on track, many problems.
Oh, I have swallowing issues,since 25 plus years comes and goes especially when I am run down/tired- food doesnt go down, especially soft food, I drink tons of water , so I dont choke,I bite my tongue when Im talking, words are missing altogether, my kids say I keep saying the same thing over and over- even a few minutes after I already said it.... This never happened before, but now when I am asleep and someone comes in and talks to me I cant remember ANYTHING at all, like it never happened.
I have inhaled liquids and things many times -broke ribs coughing hard, getting pnuemonia- esophagus test said I have motility problems.
I fall down a lot. fall into things, etc get injured because of it.
Now, in addition to all sort of nerve and sensation problems-
Id like to know if any of you have swallowing issues,ringing/clicking in ears, schleritis, retinal vasculitis, chronic diarrhea, and urinary problems,which are the only things that are "documented"
DO YOU get relief by taking 60mg of prednisone- I feel so good ,I can think better, coordinated much better, etc like i used to feel when Im not sick, Ive been taking it at least 2x a year to keep my symptoms at bay.
it is very depressing when I come off it and I feel like myself again,
If this nuerologist blows me off I dont know what I will do- but Ive not gone to one since my bad experience with the big university "hot Shot".
Im scared to go to my upcoming appt. I hope he treats me like a human being that is suffering like I am, while I continue to get worse.
I want to get on some medicine before I get worse.
one thing for sure they always return and they are only getting greater and worse- ie some spasms in one part of my leg have evolved in extremely painful !!!!! charlie horse type spasms that will leave me having sore muscles for weaks.. I had the spasms in one area, now I have them in several areas of that leg, while the top of my leg feels numb. Just weird weird stuff, Im seriously afraid to tell anyone the extent of my "symptoms". If you think Im nuts please dont tell me, I used to run a number of business and have over average intelligence,and used to be unusally strong when I was younger and was very active, it is hard to learn to be a vegetable.
Some issues I didnt see mentioned , that I have are,
How many people have very loose stools or diarrhea? Ive had it for over 20 years, along with various degrees of urinary incontenence that gets worse when I have a relapse.(I also have very bad diverticulitis , but no constipation.)
How many of you have retinal vasculitis- leaking eye vessels.
How do myotomes and dermotomes relate to MS. ? I had a study on my arm said I have active and chronic nerve root damage, report said my muscles in arm are atrophied. I know when he stuck needles and did the electric stuff I didnt mind because I couldnt feel most of it although my hand was jerking.
My ears ring. Ive had a variety of nerve pains, numbness, dizziness, all sorts of things you name it, Ive had it.
The first nuerologist( director of a big university nuero clinic) I saw about 18 years ago, said I had psycho moto form??ie crazy - so I tried to make myself work harder, but an MRI 2 years later showed I had a completely compressed spinal cord , on neck and back. Ive had 5 surgeries on my back and neck.It did relieve certain symptoms and a lot of pain,but other issues remained and continue to progress and get worse..
Im afraid to go to my upcoming neuro appt since the last time the dr, just made fun of me. and didnt even bother to
give me the benefit of the doubt and do an MRI.
More recently I went to a reumatologist becuase I havent been to one in ovr 10 years, who said I didnt have anything like lupus, because I had no REAL positive tests- of ANA, etc but only positive CRP, sedrate,
the retilinal vaculitis, etc dont mean anything and that it could just be because Im overweight.
Now my mind is starting to go, memory is bad, dont want to talk because loosing words, cant keep on track, many problems.
Oh, I have swallowing issues,since 25 plus years comes and goes especially when I am run down/tired- food doesnt go down, especially soft food, I drink tons of water , so I dont choke,I bite my tongue when Im talking, words are missing altogether, my kids say I keep saying the same thing over and over- even a few minutes after I already said it.... This never happened before, but now when I am asleep and someone comes in and talks to me I cant remember ANYTHING at all, like it never happened.
I have inhaled liquids and things many times -broke ribs coughing hard, getting pnuemonia- esophagus test said I have motility problems.
I fall down a lot. fall into things, etc get injured because of it.
Now, in addition to all sort of nerve and sensation problems-
Id like to know if any of you have swallowing issues,ringing/clicking in ears, schleritis, retinal vasculitis, chronic diarrhea, and urinary problems,which are the only things that are "documented"
DO YOU get relief by taking 60mg of prednisone- I feel so good ,I can think better, coordinated much better, etc like i used to feel when Im not sick, Ive been taking it at least 2x a year to keep my symptoms at bay.
it is very depressing when I come off it and I feel like myself again,
If this nuerologist blows me off I dont know what I will do- but Ive not gone to one since my bad experience with the big university "hot Shot".
Im scared to go to my upcoming appt. I hope he treats me like a human being that is suffering like I am, while I continue to get worse.
I want to get on some medicine before I get worse.
COMMUNITY LEADER
Hi and thank you for trusting us with your story!
I think its possible that the reason you haven't found some of your issues mentioned, is that MS is probably not the right answer for you. Why is basically because a lot of your sx's are not 'typically' related to MS, though something (in my humble opinion) is wrong and causing you all these problems, maybe there's even more than one issue.
It would have to be highly unusual after 20+ years, for the lesions generated by MS to not be showing up on your neuro exams or on an MRI by now, so i'd have to think that MS wouldn't be the most likely dx over any of the other possibles. You mention having spinal compression and having 5 surgeries which on its own 'could be' an explanation, most of what you deal with are known spinal sx's. Maybe it all goes back to your spinal issues, talking to your specialist about all this, would probably be a good place to go for some answers.
The other thought i had was that long term medically prescribed steroids can cause a number of secondary issues, eg cognitive function, mental health, bladder and bowel, swallowing, weight issues, visual etc. They are all listed as known side affects of Prednisone so i'd think it would be worth discussing the possible cause of the other related sx's you experience with your prescribing doctor, just in case they are side affects.
Hugs.........JJ
PS depression is a common issue for people living with chronic health issues, please get help for that!
I think its possible that the reason you haven't found some of your issues mentioned, is that MS is probably not the right answer for you. Why is basically because a lot of your sx's are not 'typically' related to MS, though something (in my humble opinion) is wrong and causing you all these problems, maybe there's even more than one issue.
It would have to be highly unusual after 20+ years, for the lesions generated by MS to not be showing up on your neuro exams or on an MRI by now, so i'd have to think that MS wouldn't be the most likely dx over any of the other possibles. You mention having spinal compression and having 5 surgeries which on its own 'could be' an explanation, most of what you deal with are known spinal sx's. Maybe it all goes back to your spinal issues, talking to your specialist about all this, would probably be a good place to go for some answers.
The other thought i had was that long term medically prescribed steroids can cause a number of secondary issues, eg cognitive function, mental health, bladder and bowel, swallowing, weight issues, visual etc. They are all listed as known side affects of Prednisone so i'd think it would be worth discussing the possible cause of the other related sx's you experience with your prescribing doctor, just in case they are side affects.
Hugs.........JJ
PS depression is a common issue for people living with chronic health issues, please get help for that!
Hi Kyle, After a variety of delays and still no call back from the drs office, I got my own report, says I have some fatty growth behind and around my eye. But Im sure that isnt what is giving me all my problems. Ill call and request an appointment and see what the neuro says, he saw both my arms and hands shaking and such.. so Im back on the Prednisone, cant believe what a life saver that is. I feel so much better. but it doesn't stop the shaking and the heaviness in my leg and other things, still to be determined- I guess, but report from brain scan didn't say any lesions, except for the above- said scan looks normal. I don't know if you would know, but what would cause widespread neuropathy I have it seriously in my hands, feet , legs, face and various other places, missing peristalsis in my esophagus, etc Ive had trimeg/ on my face on at least 3 occasions, have bladder and bowel issues- loss of control.. It makes it so frustrating when they don't have my lab tests handy at my appointments even though I provided them, and when I don't fit into a mold for typical symptom for disease. Meanwhile at least Im feeling so much better on the prednisone- no doubt I would've offed myself if I hadn't been able to take it all these years.
thank-you for listening and replying previously, sometimes I get really,really depressed about my condition and lack of a specific diagnosis , while I continue to get more and more physically and mentally incapacitated, and I don't want to scare my kids or mom and tell them how bad and horrible I feel or how I fell down etc.so thanks for reaching out and helping me feel like im not alone out here. be well, I hope you are doing ok.?
thank-you for listening and replying previously, sometimes I get really,really depressed about my condition and lack of a specific diagnosis , while I continue to get more and more physically and mentally incapacitated, and I don't want to scare my kids or mom and tell them how bad and horrible I feel or how I fell down etc.so thanks for reaching out and helping me feel like im not alone out here. be well, I hope you are doing ok.?
Hi Willa - The prednisone and "other drugs" have different jobs. Prednisone treats current inflammation. It is often current inflammation that causes symptoms. In your case it may be that your lack of coordination is the result of inflammation. The prednisone reduces the inflammation and you feel more coordinated. Prednisone will not help with the underlying cause of the inflammation.
The "Other Drugs" fall into two categories; Disease Modifying Drugs (DMDs) and drugs aimed at symptoms that are not the result of current inflammation.
DMD's are aimed at the underlying cause of inflammation; in this case MS. DMDs try to keep MS in check, preventing the inflammation from happening in the first place. Most of us with MS are on a DMD. If the DMD prevents the MS related inflammation from occuring there is no need for the Prednisone.
Not all of our symtoms are caused by inflammation. Some ongoing, permanent symptoms are caused by damage in our central nervous system, left behind by past bouts of inflammation. The location of the damage determines the nature of the ongoing symptom.
I'm not sure where it is, but the area of my central nervous system that controls the "start pain in feet" signals is damaged. It tells my feet to hurt when there is no reason for them to hurt. This is called neuropathic pain. I take a combination of gabapentin (an anticonvulsant) and amitriptilyne (an antidepressant) to treat my neuropathic foot pain. Often the drugs in this category have no obvious link to the symptom they are treating. They just seem to work :-)
Let us know how you make out with your MRI.
Kyle
The "Other Drugs" fall into two categories; Disease Modifying Drugs (DMDs) and drugs aimed at symptoms that are not the result of current inflammation.
DMD's are aimed at the underlying cause of inflammation; in this case MS. DMDs try to keep MS in check, preventing the inflammation from happening in the first place. Most of us with MS are on a DMD. If the DMD prevents the MS related inflammation from occuring there is no need for the Prednisone.
Not all of our symtoms are caused by inflammation. Some ongoing, permanent symptoms are caused by damage in our central nervous system, left behind by past bouts of inflammation. The location of the damage determines the nature of the ongoing symptom.
I'm not sure where it is, but the area of my central nervous system that controls the "start pain in feet" signals is damaged. It tells my feet to hurt when there is no reason for them to hurt. This is called neuropathic pain. I take a combination of gabapentin (an anticonvulsant) and amitriptilyne (an antidepressant) to treat my neuropathic foot pain. Often the drugs in this category have no obvious link to the symptom they are treating. They just seem to work :-)
Let us know how you make out with your MRI.
Kyle
Thank you so much for your reply. Im going to get the names of other medicine-
Do these MS drugs work a lot better than prednisone? Curious why they work better than prednisone.
do they have less side effects?. While prednisone hasnt stopped the progression of whatever i have it does definitely make me more coordinated
and feel a lot better, clears up my brain a bit.
I will be having the contrast MRI next week, and we will see.really appreciate your reply, as I feel very alone and have struggled and suffered with my problem for over 25years an d Im getting pretty depressed since I pretty much have lost the movement and help of my right arm(partly because I keep falling and fell on that arm that has loss of sensations already)thank-you again
Do these MS drugs work a lot better than prednisone? Curious why they work better than prednisone.
do they have less side effects?. While prednisone hasnt stopped the progression of whatever i have it does definitely make me more coordinated
and feel a lot better, clears up my brain a bit.
I will be having the contrast MRI next week, and we will see.really appreciate your reply, as I feel very alone and have struggled and suffered with my problem for over 25years an d Im getting pretty depressed since I pretty much have lost the movement and help of my right arm(partly because I keep falling and fell on that arm that has loss of sensations already)thank-you again
Hi Willa -
Prednisone is a steroid and is used to treat inflammation. It is not likely to treat the underlying cause of the inflammation. People with MS use steroids like Prednisone (oral) or Solumedrol (high dose IV infusion) to alleviate relapses. Steroids do not treat MS.
Other drugs are used to address specific, ongoing symptoms of MS. The drugs we take depend on the symptoms we have. For example, I take a combination of gabapentin (an anticonvulsant) and amitriptilyne (an antidepressant) to trea neuropathic foot pain.
To treat MS itself many of us take Disease Modifying Drug (DMD). These include Avonex, Copaxone, Betaseron, Rebif and in my case Tysabri. There are also new drugs starting to pop up like Aubagio and BG12. If you are found to have MS, the choice of which DMD you might take will be discussed between you and your doc.
I hope this clears up some of the drug questions surrounding MS.
Kyle
Prednisone is a steroid and is used to treat inflammation. It is not likely to treat the underlying cause of the inflammation. People with MS use steroids like Prednisone (oral) or Solumedrol (high dose IV infusion) to alleviate relapses. Steroids do not treat MS.
Other drugs are used to address specific, ongoing symptoms of MS. The drugs we take depend on the symptoms we have. For example, I take a combination of gabapentin (an anticonvulsant) and amitriptilyne (an antidepressant) to trea neuropathic foot pain.
To treat MS itself many of us take Disease Modifying Drug (DMD). These include Avonex, Copaxone, Betaseron, Rebif and in my case Tysabri. There are also new drugs starting to pop up like Aubagio and BG12. If you are found to have MS, the choice of which DMD you might take will be discussed between you and your doc.
I hope this clears up some of the drug questions surrounding MS.
Kyle
Today I saw the neurologist who I was referred to. He wanted to see facts and medical reports- so words to the new people- get and keep your own medical files, my doctor was supposed to include all my tests but didnt..
Now I have to wait again.
No one replied to my previous e-mail , but looks like most of my dr's dont want to make a specifc diagnosis yet, so Im going to go back on prednisone-
can someone please answer- does anyone take prednisone for MS?
If not what meds do you take?? Is it a matter of symptoms or on personal preference of the dr?
- Im going to get a copy of what the other reum(sp) dr suggested-mostly meds used in cancer ,lupus I think.. and ask you if any of you have any suggestions, meanwhile I have an order for a brain scan, at this point I dont care what is says as long as it gives a 100% clear cut diagnosis on what is wrong, I want to know so I can take something that might work better than the prednisone.While prednisone works, Ive been on it so long Im worried about side effects.by the way when I get tired my brain skips whole words, and I can proof read it and wont notice my words or sentences are off, please over look it. all the best, willa
Now I have to wait again.
No one replied to my previous e-mail , but looks like most of my dr's dont want to make a specifc diagnosis yet, so Im going to go back on prednisone-
can someone please answer- does anyone take prednisone for MS?
If not what meds do you take?? Is it a matter of symptoms or on personal preference of the dr?
- Im going to get a copy of what the other reum(sp) dr suggested-mostly meds used in cancer ,lupus I think.. and ask you if any of you have any suggestions, meanwhile I have an order for a brain scan, at this point I dont care what is says as long as it gives a 100% clear cut diagnosis on what is wrong, I want to know so I can take something that might work better than the prednisone.While prednisone works, Ive been on it so long Im worried about side effects.by the way when I get tired my brain skips whole words, and I can proof read it and wont notice my words or sentences are off, please over look it. all the best, willa
Hello , I broke up your post because it may hard for some of us read, it is for me,
I'm sure someone will respond
Hi -Ive read through a number of the posts and a lot sounds like issues I have had off and on since I was in my early 20's. Id appreciate some comments from people who have MS.Most Symptoms that I have had ebb and flow,
one thing for sure they always return and they are only getting greater and worse- ie some spasms in one part of my leg have evolved in extremely painful !!!!! charlie horse type spasms that will leave me having sore muscles for weaks.. I had the spasms in one area, now I have them in several areas of that leg, while the top of my leg feels numb. Just weird weird stuff, Im seriously afraid to tell anyone the extent of my "symptoms". If you think Im nuts please dont tell me, I used to run a number of business and have over average intelligence,and used to be unusally strong when I was younger and was very active, it is hard to learn to be a vegetable
Some issues I didnt see mentioned , that I have are,
How many people have very loose stools or diarrhea? Ive had it for over 20 years, along with various degrees of urinary incontenence that gets worse when I have a relapse.(I also have very bad diverticulitis , but no constipation.)
How many of you have retinal vasculitis- leaking eye vessels.
How do myotomes and dermotomes relate to MS. ? I had a study on my arm said I have active and chronic nerve root damage, report said my muscles in arm are atrophied. I know when he stuck needles and did the electric stuff I didnt mind because I couldnt feel most of it although my hand was jerking.
My ears ring. Ive had a variety of nerve pains, numbness, dizziness, all sorts of things you name it, Ive had it.
The first nuerologist( director of a big university nuero clinic) I saw about 18 years ago, said I had psycho moto form??ie crazy - so I tried to make myself work harder, but an MRI 2 years later showed I had a completely compressed spinal cord , on neck and back. Ive had 5 surgeries on my back and neck.It did relieve certain symptoms and a lot of pain,but other issues remained and continue to progress and get worse..
Im afraid to go to my upcoming neuro appt since the last time the dr, just made fun of me. and didnt even bother to
give me the benefit of the doubt and do an MRI.
More recently I went to a reumatologist becuase I havent been to one in ovr 10 years, who said I didnt have anything like lupus, because I had no REAL positive tests- of ANA, etc but only positive CRP, sedrate,
the retilinal vaculitis, etc dont mean anything and that it could just be because Im overweight.
Now my mind is starting to go, memory is bad, dont want to talk because loosing words, cant keep on track, many problems.
Oh, I have swallowing issues,since 25 plus years comes and goes especially when I am run down/tired- food doesnt go down, especially soft food, I drink tons of water , so I dont choke,I bite my tongue when Im talking, words are missing altogether, my kids say I keep saying the same thing over and over- even a few minutes after I already said it.... This never happened before, but now when I am asleep and someone comes in and talks to me I cant remember ANYTHING at all, like it never happened.
I have inhaled liquids and things many times -broke ribs coughing hard, getting pnuemonia- esophagus test said I have motility problems.
I fall down a lot. fall into things, etc get injured because of it.
Now, in addition to all sort of nerve and sensation problems-
Id like to know if any of you have swallowing issues,ringing/clicking in ears, schleritis, retinal vasculitis, chronic diarrhea, and urinary problems,which are the only things that are "documented"
DO YOU get relief by taking 60mg of prednisone- I feel so good ,I can think better, coordinated much better, etc like i used to feel when Im not sick, Ive been taking it at least 2x a year to keep my symptoms at bay.
it is very depressing when I come off it and I feel like myself again,
If this nuerologist blows me off I dont know what I will do- but Ive not gone to one since my bad experience with the big university "hot Shot".
Im scared to go to my upcoming appt. I hope he treats me like a human being that is suffering like I am, while I continue to get worse.
I want to get on some medicine before I get worse.
I'm sure someone will respond
Hi -Ive read through a number of the posts and a lot sounds like issues I have had off and on since I was in my early 20's. Id appreciate some comments from people who have MS.Most Symptoms that I have had ebb and flow,
one thing for sure they always return and they are only getting greater and worse- ie some spasms in one part of my leg have evolved in extremely painful !!!!! charlie horse type spasms that will leave me having sore muscles for weaks.. I had the spasms in one area, now I have them in several areas of that leg, while the top of my leg feels numb. Just weird weird stuff, Im seriously afraid to tell anyone the extent of my "symptoms". If you think Im nuts please dont tell me, I used to run a number of business and have over average intelligence,and used to be unusally strong when I was younger and was very active, it is hard to learn to be a vegetable
Some issues I didnt see mentioned , that I have are,
How many people have very loose stools or diarrhea? Ive had it for over 20 years, along with various degrees of urinary incontenence that gets worse when I have a relapse.(I also have very bad diverticulitis , but no constipation.)
How many of you have retinal vasculitis- leaking eye vessels.
How do myotomes and dermotomes relate to MS. ? I had a study on my arm said I have active and chronic nerve root damage, report said my muscles in arm are atrophied. I know when he stuck needles and did the electric stuff I didnt mind because I couldnt feel most of it although my hand was jerking.
My ears ring. Ive had a variety of nerve pains, numbness, dizziness, all sorts of things you name it, Ive had it.
The first nuerologist( director of a big university nuero clinic) I saw about 18 years ago, said I had psycho moto form??ie crazy - so I tried to make myself work harder, but an MRI 2 years later showed I had a completely compressed spinal cord , on neck and back. Ive had 5 surgeries on my back and neck.It did relieve certain symptoms and a lot of pain,but other issues remained and continue to progress and get worse..
Im afraid to go to my upcoming neuro appt since the last time the dr, just made fun of me. and didnt even bother to
give me the benefit of the doubt and do an MRI.
More recently I went to a reumatologist becuase I havent been to one in ovr 10 years, who said I didnt have anything like lupus, because I had no REAL positive tests- of ANA, etc but only positive CRP, sedrate,
the retilinal vaculitis, etc dont mean anything and that it could just be because Im overweight.
Now my mind is starting to go, memory is bad, dont want to talk because loosing words, cant keep on track, many problems.
Oh, I have swallowing issues,since 25 plus years comes and goes especially when I am run down/tired- food doesnt go down, especially soft food, I drink tons of water , so I dont choke,I bite my tongue when Im talking, words are missing altogether, my kids say I keep saying the same thing over and over- even a few minutes after I already said it.... This never happened before, but now when I am asleep and someone comes in and talks to me I cant remember ANYTHING at all, like it never happened.
I have inhaled liquids and things many times -broke ribs coughing hard, getting pnuemonia- esophagus test said I have motility problems.
I fall down a lot. fall into things, etc get injured because of it.
Now, in addition to all sort of nerve and sensation problems-
Id like to know if any of you have swallowing issues,ringing/clicking in ears, schleritis, retinal vasculitis, chronic diarrhea, and urinary problems,which are the only things that are "documented"
DO YOU get relief by taking 60mg of prednisone- I feel so good ,I can think better, coordinated much better, etc like i used to feel when Im not sick, Ive been taking it at least 2x a year to keep my symptoms at bay.
it is very depressing when I come off it and I feel like myself again,
If this nuerologist blows me off I dont know what I will do- but Ive not gone to one since my bad experience with the big university "hot Shot".
Im scared to go to my upcoming appt. I hope he treats me like a human being that is suffering like I am, while I continue to get worse.
I want to get on some medicine before I get worse.
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