Aa
leaving the forum
You know ladies and gentlemen, I have been, what I feel to be, put off for over 11 years!!!!!!! I read others posts and their responses and thought, WOW. This is a great forum. I am mistaken. The last several months have been terrible for me. Emotionally, financially, and foremost physically!!!..... I have come here for information and maybe a little advice and some support. There are a couple of you that responded to my post and I greatly appreciate you taking the time to care and respond. I know that people are busy and sick and sometimes, just don't have the time. But really. Thanks to those of you who tried to offer some advice and what not. I am grateful. I am totally discouraged and it would have been a little refreshing to have been not put off here as well!!!!
Glad to hear you're sticking around. We all need to support each other and be supported by each other. I really wish I knew more, so that I could be helpful. Unfortunately, I am in the same "no clue what my body is doing" boat that you and so many other are in. Please don't ever feel that you're being ignored. This is such a great group of ladies (and some gents!). Even if we can't offer any answers, we are keeping each other in our thoughts and prayers. Hang in there.
Penn
Penn
I sat here and attempted to read all the post while fighting severe brain fog and fatigue.
Sugar I'm sorry for your frustrations and confusion with the medical community.But here at these forums we are a virtual family and with any family feelings can get out of sorts.We all come here for questions and answers and the understanding of others of the DX process of MS or the understanding from the ones of us that are dx'd.
If your rheumy thinks its lupus then get on the phone and tell them to do the proper testing.No matter the Dx you are always welcome to our virtual forum and family.
I have hearing loss,bladder problems,leg problems and definatly understand the getting through each day to complete tasks.
Sugar , I have brain stem lesions,the most difficult to treat in MS.I had to make choices,either lay down and sercome to this damn disease or move on and except it.Heck I could wake up someday and have no use of my legs.My neuro has laid it all on the table.
Ya need to make some life altering choice,do what you can do each day,conserve energy when possible and continue to follow up with DRs if it takes 20 to get to your symptoms.
Many post I read,but don't respond as somedays I can't think or see straight,or I'm just not qualified to offer any insight.
Quix ,
Don't apologize you are a battling this darn disease and we don't always have the strength or alertness to respond.
If I remember right you are just getting over dble vision and having your own battle with fatigue.
You have done an awesome job along the rest responding to post.
Sugar stay with us,we realize that we all have frustrating days and when can all jump in haste!!!
Sugar I'm sorry for your frustrations and confusion with the medical community.But here at these forums we are a virtual family and with any family feelings can get out of sorts.We all come here for questions and answers and the understanding of others of the DX process of MS or the understanding from the ones of us that are dx'd.
If your rheumy thinks its lupus then get on the phone and tell them to do the proper testing.No matter the Dx you are always welcome to our virtual forum and family.
I have hearing loss,bladder problems,leg problems and definatly understand the getting through each day to complete tasks.
Sugar , I have brain stem lesions,the most difficult to treat in MS.I had to make choices,either lay down and sercome to this damn disease or move on and except it.Heck I could wake up someday and have no use of my legs.My neuro has laid it all on the table.
Ya need to make some life altering choice,do what you can do each day,conserve energy when possible and continue to follow up with DRs if it takes 20 to get to your symptoms.
Many post I read,but don't respond as somedays I can't think or see straight,or I'm just not qualified to offer any insight.
Quix ,
Don't apologize you are a battling this darn disease and we don't always have the strength or alertness to respond.
If I remember right you are just getting over dble vision and having your own battle with fatigue.
You have done an awesome job along the rest responding to post.
Sugar stay with us,we realize that we all have frustrating days and when can all jump in haste!!!
I can relate to your frustration and I have only been having sx with no dx for 2 months now, not 11 YEARS like you!!! I am glad to see you are staying with us and please understand that we all are really here to support eachother through this. There seam to be more people on this forum that have no dx than that do, so it is hard for those of us that don't to speak up when we don't really know the answers. That does not mean we are not there supporting you. Stay strong and listen to the people here as they help guide you to the next step in your quest for good medical care.
Quix - Guilt will not get you anywhere with this disease. You are a wonderful giving human being and are only capable of what your body & mind's limitations might be at any given time. Please don't take the stress of not being able to be everything to everybody on. It will do nothing but enhance your health struggles. We, as a group, can help people and when you are able we are grateful for any words of wisdom to help guide us all. Please take care of you!
Porky pig out!! Kristin
Quix - Guilt will not get you anywhere with this disease. You are a wonderful giving human being and are only capable of what your body & mind's limitations might be at any given time. Please don't take the stress of not being able to be everything to everybody on. It will do nothing but enhance your health struggles. We, as a group, can help people and when you are able we are grateful for any words of wisdom to help guide us all. Please take care of you!
Porky pig out!! Kristin
Maybe I was hasty. I have been going through so much and am very frustrated. Perhaps I am taking that frustration out on the wrong people. You know how it is to deal with people that just don't get it.i I had a rheumatologist appointment on Thursday, which again, has left me confused and concerned. He thinks there is a possibility of lupus. My question is, why hasn't someone thought of that sooner!! You must understand my aggravation. I know very well first hand what it is like to not feel well and not have the energy to complete the tasks that are necessary from day to day. Since April, I have been Dx'd with incontinence, moderate hearing loss and it is suspected that I have glaucoma or will develop it. I found this during an exam because my vision is deteriorating more quickly than I would like. I am scared to death that if I do not get some kind of help soon, all of this will be permanent. Desperation comes to mind............ Quix please do not apologize!! I was not directing my complaint to any one in particular. I understand that you are having health issues of your own.
Are you sure that's what you want to do?
You seem to have ups and downs. I see you joining in on other peoples posts and seem to be interacting just fine. This seems so sudden. Has something happened in your life that has triggered this? I ask because I was just thinking to myself last week that it appeared you had blended so well and nicely lately.
Quix isn't the be-all, end-all here. It's great to have her input because she is a physician and she's genuinely a delightful human being. We all clamor for her attention. She usually does get around to everyone. You have been in the unfortunate position of jumping in when she has been having very ill. This is an MS forum. Quix has MS. You are still, after eleven long years struggling for a diagnosis, and that's wrong. We would love to support you. You should have an answer by now. Quix has been working on something. She is just having trouble right now.
Give us time. I'm just a little surprised. Have you spoken to you doc about the up and down thing? Am I way off about that? Perhaps I am. I would be frustrated beyond belief with my doctors if I were you after 11 years. But give us a little time.
We love having you interact and joining in on the posts. I was so happy to see that! I thought we were good. Please stay around.
Feel well,
Chris*
You seem to have ups and downs. I see you joining in on other peoples posts and seem to be interacting just fine. This seems so sudden. Has something happened in your life that has triggered this? I ask because I was just thinking to myself last week that it appeared you had blended so well and nicely lately.
Quix isn't the be-all, end-all here. It's great to have her input because she is a physician and she's genuinely a delightful human being. We all clamor for her attention. She usually does get around to everyone. You have been in the unfortunate position of jumping in when she has been having very ill. This is an MS forum. Quix has MS. You are still, after eleven long years struggling for a diagnosis, and that's wrong. We would love to support you. You should have an answer by now. Quix has been working on something. She is just having trouble right now.
Give us time. I'm just a little surprised. Have you spoken to you doc about the up and down thing? Am I way off about that? Perhaps I am. I would be frustrated beyond belief with my doctors if I were you after 11 years. But give us a little time.
We love having you interact and joining in on the posts. I was so happy to see that! I thought we were good. Please stay around.
Feel well,
Chris*
Quix, I think your reply to Sugar was very nicely put. Very diplomatic! I also agree with you penn. Sugar, I hope you are able to read the posts that are here and take them to heart and choose to remain. Carol I think your post is very important as well. At the end of our day, our symptoms, Dx or lack there of is ultimately our own responsibility. The answers and support provided on this forum in my opinion, give us strength, insights, support and valdiation. ALL who respond in these posts whether to our own personal thread or others' provide us with help and are valuable to the extent that we as indivduals give them value. All threads can help us continue in our journey through this life.
Finally Sugar, I truly believe that in life we find what we are looking for. If we look for contentment, we find contentment, if we look for positives we find positives. Please consider going through the posts and look for the positives. Don't waste your precious energy on unmet expectations rather the met ones, in this way, your life may be more rewarding and fufilling!! Take this for its worth! I write it with the utmost humility and well wishes for you and yours.
Quix I repeat Penn's post: "I feel so badly that you are apologizing for not being omniscient! You have SIGNIFICANT health issues of your own, yet spend what is obviously a huge amount of time helping the rest of us. Don't you dare feel badly that you cannot respond personally to each and every posting."
In the words of a local radio personality (Paul W. Smith) 'Go out and make it a great rest of the day'!!
N
Finally Sugar, I truly believe that in life we find what we are looking for. If we look for contentment, we find contentment, if we look for positives we find positives. Please consider going through the posts and look for the positives. Don't waste your precious energy on unmet expectations rather the met ones, in this way, your life may be more rewarding and fufilling!! Take this for its worth! I write it with the utmost humility and well wishes for you and yours.
Quix I repeat Penn's post: "I feel so badly that you are apologizing for not being omniscient! You have SIGNIFICANT health issues of your own, yet spend what is obviously a huge amount of time helping the rest of us. Don't you dare feel badly that you cannot respond personally to each and every posting."
In the words of a local radio personality (Paul W. Smith) 'Go out and make it a great rest of the day'!!
N
I feel so badly that you are apologizing for not being omniscient! You have SIGNIFICANT health issues of your own, yet spend what is obviously a huge amount of time helping the restof us. Don't you dare feel badly that you cannot respond personally to each and every posting. People need to realize that there are very few folks on the forum who are capable of giving a qualified response and you can only stretch yourself so thin. We are ALL here looking for support, I assume yourself included. Just because those of us who are not qualified to give advice choose, wisely I think, not to give bad advice, does not mean we do not read theposts and feel and pray for the other folks. You mean so very much to so very many. Please do not beat yourself up over this - it is clearly not your fault.
Penn
Penn
I just looked over the whole board and can see that while you did get many responses from other people, you did not get the comprehensive response I promised - twice - from me. I promised you last on Monday. I am sorry - It sounds hollow because I have said that before. From my perspective I did let you down. Sometimes I answer other people than the onewho are waiting because I have a ready answer for them and I'm too tired for a long thoughtful one. Sometimes I forget.
Then accidents happen. A couple nights ago I wrote your answer. This is the truth. I do not lie on line to make myself feel better. Heck! We're anonymous here. I wrote you a really long response night before last. I remember because I was talking about which cranial nerves would be involved to cause you hoarseness (I had to look them up so I could be accurate) and I was not happy that the ENT had given you a diagnosis of laryngitis (inflammation of the vocal cords) but then ordered vocal therapy which would only be ordered in the cords were weak (as in a neurological disorder).
It's not fair to the forum if this was the reason you're angry. A couple of your posts from the beginning have lashed out at our poor response. You've mentioned it at least three times, yet on one of those occasions you overlooked many responses that had come in over the prior several days and complained anyway. So when I read here that you again felt dismissed by "us" I went to the long one I wrote to you - to make a point because now I was a little ticked. That post I wrote is nowhere to be found. Clearly I sent it off into cyberspace or forgot to hit post before I changed pages (which loses the post). I clearly remember writing it.
You have shown that you are a valuable part of the forum. I've seen you helping people with looking up definitions and info to answer their questions.
So now, we are at an uncomfortable spot. I am clearly at fault with no way to make things better except to reproduce in some way the thoughts I put together for you the other evening. I guess it depends on how angry you are. If you respond to this, you will have what I already wrote, but "the dog ate. :-( " (weak attempt at humor)
I , too would like you to stay. I will feel badly if you go and I know it was because I wasn't there for you. But, What is done (or actually not done) is (not) done. We can only move on from here. If you respond to this, you will have my reconstructed epic discourse by return keystroke (ENTER). What do you say? Q
Then accidents happen. A couple nights ago I wrote your answer. This is the truth. I do not lie on line to make myself feel better. Heck! We're anonymous here. I wrote you a really long response night before last. I remember because I was talking about which cranial nerves would be involved to cause you hoarseness (I had to look them up so I could be accurate) and I was not happy that the ENT had given you a diagnosis of laryngitis (inflammation of the vocal cords) but then ordered vocal therapy which would only be ordered in the cords were weak (as in a neurological disorder).
It's not fair to the forum if this was the reason you're angry. A couple of your posts from the beginning have lashed out at our poor response. You've mentioned it at least three times, yet on one of those occasions you overlooked many responses that had come in over the prior several days and complained anyway. So when I read here that you again felt dismissed by "us" I went to the long one I wrote to you - to make a point because now I was a little ticked. That post I wrote is nowhere to be found. Clearly I sent it off into cyberspace or forgot to hit post before I changed pages (which loses the post). I clearly remember writing it.
You have shown that you are a valuable part of the forum. I've seen you helping people with looking up definitions and info to answer their questions.
So now, we are at an uncomfortable spot. I am clearly at fault with no way to make things better except to reproduce in some way the thoughts I put together for you the other evening. I guess it depends on how angry you are. If you respond to this, you will have what I already wrote, but "the dog ate. :-( " (weak attempt at humor)
I , too would like you to stay. I will feel badly if you go and I know it was because I wasn't there for you. But, What is done (or actually not done) is (not) done. We can only move on from here. If you respond to this, you will have my reconstructed epic discourse by return keystroke (ENTER). What do you say? Q
I am very sorry you feel this way. Speaking for myself there are lots of times that I did'nt get answers but I'm sure it was because people where busy or maybe they felt someone elses needed more attention. Either way I understand. If you look around there is always someone worse off than you. You just need to hang in there and don't set and wait on someone to talk to you, jump in on the conversation and talk to others.
I have found that answering other posts (even though I'm not qualified) helps me learn alot. You can find out alot about your own problems by talking with others about theres.
There are alot of people here needing help and you need to realize that we care just as much for you and your problems as we do anyone else.
I hope you reconsider and join in .
Carol
I have found that answering other posts (even though I'm not qualified) helps me learn alot. You can find out alot about your own problems by talking with others about theres.
There are alot of people here needing help and you need to realize that we care just as much for you and your problems as we do anyone else.
I hope you reconsider and join in .
Carol
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