Aa
Checking Back in
HELLO EVERYONE !!!. I must apologize for being away for so long. I have been struggling with several issues but feel I am clear heaed and ready to go. Each and everyday I have said a prayer for my family here and I hope you have been helped by those.
I was wondering if any of you ever get so overwelmed that you just crawl into hiding, kinda like I did. I have struggled with many issues. I feel that all the "experts" that I have been to has been a waste of time. All I have to show from them is the same pain and a big bill to pay. Health wise I am still in the same boat as I was. Pain and numbness all over, Double vision so bad that I am sick to my stomach. I still have so much wonder and why in my life. All the tests, time and money and still no answers. I watch stories here from my friends in the forum dealing with the same things and I think I finally got tired of feeling sorry for myself, grabbed those boot straps and pulled myself back up.
I have taken the advice of the doctor who first treated my double vision. I am going to see a new neuro opthamologist. I have also started the process of finding a new neuro. Do sometimes any of you feel abandoned by your PCP or other doctors you are seeing? It seems that after all the tests and nothing coming of it the doctors look at me shake their head, I leave and never can get a return call or any more help from that time forward. I have come to the realization that I am not crazy, something is wrong with me. It is not in my head and I have to suck it up and look in other places to find the answers.
In a nutshell that is my story. I hope to be a better friend and learn from all of you, my friends here on med help. bless each and everyone of you. My prayers as always are with you.
God Bless,
Mike
I was wondering if any of you ever get so overwelmed that you just crawl into hiding, kinda like I did. I have struggled with many issues. I feel that all the "experts" that I have been to has been a waste of time. All I have to show from them is the same pain and a big bill to pay. Health wise I am still in the same boat as I was. Pain and numbness all over, Double vision so bad that I am sick to my stomach. I still have so much wonder and why in my life. All the tests, time and money and still no answers. I watch stories here from my friends in the forum dealing with the same things and I think I finally got tired of feeling sorry for myself, grabbed those boot straps and pulled myself back up.
I have taken the advice of the doctor who first treated my double vision. I am going to see a new neuro opthamologist. I have also started the process of finding a new neuro. Do sometimes any of you feel abandoned by your PCP or other doctors you are seeing? It seems that after all the tests and nothing coming of it the doctors look at me shake their head, I leave and never can get a return call or any more help from that time forward. I have come to the realization that I am not crazy, something is wrong with me. It is not in my head and I have to suck it up and look in other places to find the answers.
In a nutshell that is my story. I hope to be a better friend and learn from all of you, my friends here on med help. bless each and everyone of you. My prayers as always are with you.
God Bless,
Mike
Hi Michael,
I'm glad to "see" you, but sad to hear you are not improving. I hope you don't feel you need to hide from us. It's helped me a lot to come here and let out a lot of the feelings that are just too much for my "other" family. And even if you are feeling shy, sometimes reading other posts and journals can still be really therapeutic. Do you get a long weekend this week? I hope so. Either way, I hope you and your family get to enjoy some end of summer fun.
Take care!
I'm glad to "see" you, but sad to hear you are not improving. I hope you don't feel you need to hide from us. It's helped me a lot to come here and let out a lot of the feelings that are just too much for my "other" family. And even if you are feeling shy, sometimes reading other posts and journals can still be really therapeutic. Do you get a long weekend this week? I hope so. Either way, I hope you and your family get to enjoy some end of summer fun.
Take care!
Thank You, Thank You, Thank you. You guys have made me feel so special with your comments and words of encouragement. I am so glad I found the fourm. I am working to stay awake longer after getting home from work, helping with my boy's homework etc, to log in and say hello. Take care all of you I am praying for all of us.
Thank You again,
Mike
Thank You again,
Mike
Hi, It seems that you and I have both been hiding at the same time. Funny, I have been off of the forum for a couple of weeks for the very same reason. Just tired of dealing with no answers!
My next repeat MRI is on Sept, 11th and I see my new neuro(MS specialist) on Sept, 18th. I actually changed the MRI date to the 11th because my neuro was going on vacation and I couldn't stand the thoughts of having to worry about the results for a whole month.
He had me go for a new VEP which this time, unlike the first one in 2006, was normal, but I won't know what this means until I go see him on the 18th.
Since I talked to you last my 16 year old stepson got sick with something very similar to what I did. His peds neuros say ADEM or MS. His spinal tap came back possitive showing more than 5 O bands and a raised IgG level. His neuros are leaning toward MS for him. He also has double vision caused by the brainstem lesion he has. His DV is trying to go away now after the IV steriods.
I think, his onset two years after mine brought back a lot of unpleasant memories for me and set me off into some kind of depression. I am now crawling back out of the hole and trying to deal with it all again.
My new MS specialist seems to think that this is not MS with me, but has not given me any other dx yet for sure. He says that my working dx is an auto immune response to some unknown trigger. It is not unknown to me though, I am almost certain that it was the abrupt SSRI change six weeks prior too the attack.
Questions, Questions and still more Questions!! I know how you are feeling, I am right there with you on this one! Stick around this time and I will too, OK?
Your friend
~Santana~
My next repeat MRI is on Sept, 11th and I see my new neuro(MS specialist) on Sept, 18th. I actually changed the MRI date to the 11th because my neuro was going on vacation and I couldn't stand the thoughts of having to worry about the results for a whole month.
He had me go for a new VEP which this time, unlike the first one in 2006, was normal, but I won't know what this means until I go see him on the 18th.
Since I talked to you last my 16 year old stepson got sick with something very similar to what I did. His peds neuros say ADEM or MS. His spinal tap came back possitive showing more than 5 O bands and a raised IgG level. His neuros are leaning toward MS for him. He also has double vision caused by the brainstem lesion he has. His DV is trying to go away now after the IV steriods.
I think, his onset two years after mine brought back a lot of unpleasant memories for me and set me off into some kind of depression. I am now crawling back out of the hole and trying to deal with it all again.
My new MS specialist seems to think that this is not MS with me, but has not given me any other dx yet for sure. He says that my working dx is an auto immune response to some unknown trigger. It is not unknown to me though, I am almost certain that it was the abrupt SSRI change six weeks prior too the attack.
Questions, Questions and still more Questions!! I know how you are feeling, I am right there with you on this one! Stick around this time and I will too, OK?
Your friend
~Santana~
It's good to see you again. I'm glad you are coming up ready to move on and try again to find some answers.
I'm real uneven as to when I post and how much, because I'm so wrapped up in my own struggle for answers. For someone to listen, and try to fit all the pieces of the puzzle together.
I went through two neuros with no answers, and then I got accepted to be seen by an MS Specialist. I was excited, cautiously optomisitic, and worked hard at putting together a notebook with my medical records; MRIs, LP, EEG, VFT, chart notes from last two neuros, my Timeline, things I have lost by gaining these symptoms, including pictures of my snorkling, climbing mountains, traveling, etc.
She said that although I have many neurological symptoms, and an abnormal brain MRI, she thinks I most likely have small vessel ischemic disease (which I really don't have any risk factors for). She's sending me for a brain and neck MRA, which would show large vessel disease, which even she admits in her chart notes is highly unlikely given my age (not to mention the lack of risk factors)!
She said she would send me to a urologist to see if those symptoms were urogenic, but the uro she referred to doesnt' have time to do any testing for several months.
The first two neuros also discounted my neurological symptoms (not "hard" enough evidence) and suggested ischemic disease as the reason for my abnormal brain MRI. By #2 I had learned to keep asking questions until they sent me for more tests. Which didn't show much, so she showed me the door, saying I needed no further neurological care. At least my PCP and MS specialist were shocked that she would say such a thing. The specialist wanted me to go back to #2 until she heard that (she obviously neglected to read the chart notes that i had faxed to her, though she charged my insurance for the time on the date I faxed her 23 pages).
So, what I'm saying is yes, I have felt what you are talking about. I've felt like crawling away and hiding, with some chocolates or frozen yogurt. I have felt the frustration, the lack of belief in me by many in the medical community. I meant to write a short answer, but I don't think that those of us that go through this over and over can put it in 500 words or less1 :o)
You have worse symptoms than I do, and it always shocks me that people with much more going on than I get the same treatment, or lack thereof.
I'm working on moving on. I'm trying to shake off my symptoms, but they hang around, refusing to be denied. I won't quit. These wonderful people on the forum help me keep going, give me new ideas, laughs, hugs, and prayers. We are blessed to have this place.
Hugs,
Kathy
I'm real uneven as to when I post and how much, because I'm so wrapped up in my own struggle for answers. For someone to listen, and try to fit all the pieces of the puzzle together.
I went through two neuros with no answers, and then I got accepted to be seen by an MS Specialist. I was excited, cautiously optomisitic, and worked hard at putting together a notebook with my medical records; MRIs, LP, EEG, VFT, chart notes from last two neuros, my Timeline, things I have lost by gaining these symptoms, including pictures of my snorkling, climbing mountains, traveling, etc.
She said that although I have many neurological symptoms, and an abnormal brain MRI, she thinks I most likely have small vessel ischemic disease (which I really don't have any risk factors for). She's sending me for a brain and neck MRA, which would show large vessel disease, which even she admits in her chart notes is highly unlikely given my age (not to mention the lack of risk factors)!
She said she would send me to a urologist to see if those symptoms were urogenic, but the uro she referred to doesnt' have time to do any testing for several months.
The first two neuros also discounted my neurological symptoms (not "hard" enough evidence) and suggested ischemic disease as the reason for my abnormal brain MRI. By #2 I had learned to keep asking questions until they sent me for more tests. Which didn't show much, so she showed me the door, saying I needed no further neurological care. At least my PCP and MS specialist were shocked that she would say such a thing. The specialist wanted me to go back to #2 until she heard that (she obviously neglected to read the chart notes that i had faxed to her, though she charged my insurance for the time on the date I faxed her 23 pages).
So, what I'm saying is yes, I have felt what you are talking about. I've felt like crawling away and hiding, with some chocolates or frozen yogurt. I have felt the frustration, the lack of belief in me by many in the medical community. I meant to write a short answer, but I don't think that those of us that go through this over and over can put it in 500 words or less1 :o)
You have worse symptoms than I do, and it always shocks me that people with much more going on than I get the same treatment, or lack thereof.
I'm working on moving on. I'm trying to shake off my symptoms, but they hang around, refusing to be denied. I won't quit. These wonderful people on the forum help me keep going, give me new ideas, laughs, hugs, and prayers. We are blessed to have this place.
Hugs,
Kathy
Oh yes, we all have had to have a break and try to fix ourselves...and taking a break at the forum is a normal process.... We are here for each other when we need to be...that is the thing.
You take care and hang in there
andi
You take care and hang in there
andi
Yup, me too. Even though I'm dx'd, I feel it's a struggle w/the reg. doc. So very hard, especially when you can't even get out from under that rock.
I'm so glad to see you here again. And, also that you say you are "READY."
Whatcha need? You want us to reseach Docs in your area? You name it Micheal. We've been waiting for your strong return!
Lets go get em' - seek em' out!
-Shell
I'm so glad to see you here again. And, also that you say you are "READY."
Whatcha need? You want us to reseach Docs in your area? You name it Micheal. We've been waiting for your strong return!
Lets go get em' - seek em' out!
-Shell
Mike, I'm so happy to see you back and posting.
You know most of us could have written your post. We all get to that point and trust me when I say you are never alone in this!!! It is frustrating to be told nothing by so called specialists and harder yet if your own doc doesn't do anything to help you out!
I'm glad that you are coming back fighting again. It is time for you to find someone new, someone who is going to look outside of the box. We will be here for you as you do this.
Welcome back my friend
Hugs
Moki
You know most of us could have written your post. We all get to that point and trust me when I say you are never alone in this!!! It is frustrating to be told nothing by so called specialists and harder yet if your own doc doesn't do anything to help you out!
I'm glad that you are coming back fighting again. It is time for you to find someone new, someone who is going to look outside of the box. We will be here for you as you do this.
Welcome back my friend
Hugs
Moki
I can relate all to well to everything you said in your post. I'm sorry you're going through all of this! I've done the same as you, taken a break and tried to WILL myself well...which didn't work. I've tried lying to myself and just 'believing' I'm okay, which doesn't work..the numbness and weird sensations creep back in along with the fatigue reminding me that..no...you're not okay. I don't have much advice excpet, #1 pray...#2 listen to your body and follow your intuition..positive test or not, you know when something isn't right. And yes, this crazy rollercoaster we're own trying to find out what's wrong with us will make you nuts and want to go into hiding. The medical bills that are piled up will remind you daily that you've had ALL THOSE TESTs only to find out NOTHING. And yes, the dr's seem to ignore your calls and not be as concerned once they've done the test and seem to write us off. That's why I changed nuero's. I couldn't get nuero. 1 to call back..went to the office, crying...asking for a sooner apt., got a phone call they'd work me in and call me with an apt..and nothing..no calls..and it's been 4 wks! Thanks to connections, I got an apt. with nuero #2. For now, he's a keeper. I think for me, I understand the doctors frustrations when we're telign them all of these symptoms yet they can't diagnose us without medical proof, yet, none of the tests show enough or anything, so they are not sure what to do next. Why can't they just say, hey, nothing's showing up for sure right now, but I'm going to work with you and we'll figure this out together. Y'know. Just let us know you CARE. Have you had a LP yet? If so, what was your experience with it?
Well, I'm sorry I went on and on...didn't intend to, but get so passionate talking about dr's and medical bills. I guess we all can relate.
God bless you today! And everyday! And we all need to pull together in prayer and lift each other up! Don't let anything 'steal our joy'...
Much love and hugs~
Shelley
Well, I'm sorry I went on and on...didn't intend to, but get so passionate talking about dr's and medical bills. I guess we all can relate.
God bless you today! And everyday! And we all need to pull together in prayer and lift each other up! Don't let anything 'steal our joy'...
Much love and hugs~
Shelley
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