Aa
Results of a long journey
I feel compelled to inform everyone of my last Dr.s appointment and its conclusion of my long journey in attempting to find what was going on with my health throughout the three long years. A forum, that is comprised of compassionate and supportive people, I do not think I would of held onto my sanity throughout the ups and downs of the diagnosis process and the symptoms that had debilitated, incapacitated and wreaked havoc on my personal life.
I received a call yesterday by the MS Specialist with the results of my lumbar puncture and everything that I had been going through for years was hanging on a frail thread of an answer. Although there was a few out of range values, there were no oligoclonal banding in my CSF or serum. There was no monoclonal banding of the serum electrophoresis testing. My MS Specialist concluded that, "MS can be wiped off the plate entirely." This is a doctor who said, "I'm not impressed with your lesions. They do not look like MS lesions."
I can't help to say that a big part of me was relieved and did express to the doctor that although I am happy to hear I do not have a progressive demyelinating disease, I am still bereft of the causes of what has been going on with my health from chronic fatigue, paresthesias, pain, balance and coordination issues, blurred vision and sometimes cognitive dysfunction.
The doctor's comment was to me that I could possibly have chronic fatigue syndrome and that I should look into seeing a specialist in that area. However, the doctor did state that according to the CDC's diagnostic criteria, that I may not qualify. I asked "who" I could go to or someone the doctor knew to refer me to and there was no helpful answer.
After I hung up the phone, I cried. I cried because I am no farther than I was three years ago and the mere fact that I would have to start "ALL OVER" again. The things I've lost along the way grieved me, yet, somehow I managed to pull myself out of that grief and push forward and tried to live my life as best as I could.
I even contemplated on going back to work by going to get my recertification of my BLS and went to an interview for a position. I submitted my cover letter and resume. During the time of waiting to hear from the facility that I applied to, once again I fell into a health crisis that did not allow me to go hopping on the job hunting bandwagon and instead, laid flat on my back or became a couch potato for weeks. I could barely stand to hold my weight or go up my stairs without crawling 3/4 of the way.
Of course, I googled certified CFS doctors in my area and none to be found.
I'm relieved, yet devastated at the same time.
Thank you all for the years of support, listening and most of all friendship.
Lisa
I received a call yesterday by the MS Specialist with the results of my lumbar puncture and everything that I had been going through for years was hanging on a frail thread of an answer. Although there was a few out of range values, there were no oligoclonal banding in my CSF or serum. There was no monoclonal banding of the serum electrophoresis testing. My MS Specialist concluded that, "MS can be wiped off the plate entirely." This is a doctor who said, "I'm not impressed with your lesions. They do not look like MS lesions."
I can't help to say that a big part of me was relieved and did express to the doctor that although I am happy to hear I do not have a progressive demyelinating disease, I am still bereft of the causes of what has been going on with my health from chronic fatigue, paresthesias, pain, balance and coordination issues, blurred vision and sometimes cognitive dysfunction.
The doctor's comment was to me that I could possibly have chronic fatigue syndrome and that I should look into seeing a specialist in that area. However, the doctor did state that according to the CDC's diagnostic criteria, that I may not qualify. I asked "who" I could go to or someone the doctor knew to refer me to and there was no helpful answer.
After I hung up the phone, I cried. I cried because I am no farther than I was three years ago and the mere fact that I would have to start "ALL OVER" again. The things I've lost along the way grieved me, yet, somehow I managed to pull myself out of that grief and push forward and tried to live my life as best as I could.
I even contemplated on going back to work by going to get my recertification of my BLS and went to an interview for a position. I submitted my cover letter and resume. During the time of waiting to hear from the facility that I applied to, once again I fell into a health crisis that did not allow me to go hopping on the job hunting bandwagon and instead, laid flat on my back or became a couch potato for weeks. I could barely stand to hold my weight or go up my stairs without crawling 3/4 of the way.
Of course, I googled certified CFS doctors in my area and none to be found.
I'm relieved, yet devastated at the same time.
Thank you all for the years of support, listening and most of all friendship.
Lisa
Hi, Lisa.
No thanks necessary. That is what is so wonderful about our "Forum Family"-we try to keep each other postive, when everything seems so bleak.
If any doctor ever has the audactiy to tell you, (as my former Neuro told me) that you will die before anyone figures out what is wrong-Run, Don't Walk-right out of the office!
I've lost count of the numbers of doctors I saw before getting my diagnosis.
I know that you will get a diagnosis. I knew with God's help, I would be diagnosed.
It just took longer than I had wanted.
(((Hugs)))
Sheila
No thanks necessary. That is what is so wonderful about our "Forum Family"-we try to keep each other postive, when everything seems so bleak.
If any doctor ever has the audactiy to tell you, (as my former Neuro told me) that you will die before anyone figures out what is wrong-Run, Don't Walk-right out of the office!
I've lost count of the numbers of doctors I saw before getting my diagnosis.
I know that you will get a diagnosis. I knew with God's help, I would be diagnosed.
It just took longer than I had wanted.
(((Hugs)))
Sheila
meagh00704:
Thank you for your encouragement. You definitely display perseverance and I'm happy to know that you're not tossing up your hands in the air giving up when a doctor or neurologist hangs onto the "maybe" thread. It is the ultimate frustrating situation to be in, I concur.
10 years is a long time to suffer from anything that is keeping you from living your life the way you want to, need to and most of all without explanation(s).
I sincerely hope that someday soon, there will be an end in sight for your quest for an answer. The state of uncertainty for however long you or anyone else to live in is the most unfair position a person can take.
Thank you again for taking the time to respond.
Lisa
SailorSong (Dennis):
I find it quite encouraging to read about your experiences that in the end, not matter what the diagnosis (in your case PPMS), there is an answer.
I too, know that the lumbar puncture aids in a diagnosis for MS when it's positive for o-bands as well as in increase in the 24 hour production rate of protein, displaying a break in a person's blood brain barrier. However, not everyone will fit the clinical typical picture, but rather be atypical in presentation.
Your experience of 12 years with symptoms and not getting an answer until three years ago while maintaining your mental health is remarkable. The old adage, "what doesn't kill us, makes us stronger" comes to mind.
Thank you for your words and time you spent writing to me Dennis. It is greatly appreciated.
Beth (Maestro1959):
Thank you for sharing your experiences with doctor and finally the end result of getting answers to your health problems. It does give me hope that I will get mine someday.
I will keep my chin up and I will go forward. I suppose my end result will depend on how much I push, which I did not push for over 1.5 years. This delayed things quite a bit. I needed the long sabbatical to regroup and gain some emotional strength to deal with the doors closing in my face, when all I did was ask "what is this? What is keeping my life from being lived like it used to be? Sometimes that question seems to be all to cumbersome for a doctor to answer when they have none.
Sheila (Yorkieville):
Thank you for taking the time to write in my thread and give hope and encouragement when it is needed. I appreciate your efforts and it significantly helps when anyone (including myself) needs a small push forward and confidence.
LOL, I certainly hope my deathbed is not the only time when I find out what is wrong and seek some form of appropriate treatment to ease the pain or whatever else goes on with me. I am hopeful still, even after all of this.
Thank you again for your words of support.
PastorDan: Six Neuros? Well at least you are in good hands now right? Seems to me you have established a great relationship with the latest one. That to me is the most important when you know you can establish a trusting relationship with your doctor, knowing he/she has YOUR best interest at heart.
I had my fourth Neuro with the last visit and frankly, I've had it up to my eyeballs with them. I received two "Possible MS" diagnosis, one "It's not MS, but perhaps CFS" and one "I don't know, but you may have a psychiatric overlap". Good riddance I say. LOL
So hopefully my appointment with the rheumatologist will give me answers. I seen him in 2011 once and now am returning for a follow-up since there's no change and I am still going through whatever I'm going through. I'm still hopeful.
Thank you PastorDan for the time you have taken to write to me and respond in my post.
LuLu: You know you wont be seeing the last of me. LOL. You couldn't be so lucky. :P Thank you for your help, understanding and compassionate listening. It is always needed and you provide it at the right moments.
((Hugs to you))
Immescio: Thank you for writing to me and responding. This forum has immensely helped through my most troubling times. I should say the "people" within it has helped me rather than use the "forum" word so loosely.
((I'll come back and address all the others, I need to take a break))
Thank you for your encouragement. You definitely display perseverance and I'm happy to know that you're not tossing up your hands in the air giving up when a doctor or neurologist hangs onto the "maybe" thread. It is the ultimate frustrating situation to be in, I concur.
10 years is a long time to suffer from anything that is keeping you from living your life the way you want to, need to and most of all without explanation(s).
I sincerely hope that someday soon, there will be an end in sight for your quest for an answer. The state of uncertainty for however long you or anyone else to live in is the most unfair position a person can take.
Thank you again for taking the time to respond.
Lisa
SailorSong (Dennis):
I find it quite encouraging to read about your experiences that in the end, not matter what the diagnosis (in your case PPMS), there is an answer.
I too, know that the lumbar puncture aids in a diagnosis for MS when it's positive for o-bands as well as in increase in the 24 hour production rate of protein, displaying a break in a person's blood brain barrier. However, not everyone will fit the clinical typical picture, but rather be atypical in presentation.
Your experience of 12 years with symptoms and not getting an answer until three years ago while maintaining your mental health is remarkable. The old adage, "what doesn't kill us, makes us stronger" comes to mind.
Thank you for your words and time you spent writing to me Dennis. It is greatly appreciated.
Beth (Maestro1959):
Thank you for sharing your experiences with doctor and finally the end result of getting answers to your health problems. It does give me hope that I will get mine someday.
I will keep my chin up and I will go forward. I suppose my end result will depend on how much I push, which I did not push for over 1.5 years. This delayed things quite a bit. I needed the long sabbatical to regroup and gain some emotional strength to deal with the doors closing in my face, when all I did was ask "what is this? What is keeping my life from being lived like it used to be? Sometimes that question seems to be all to cumbersome for a doctor to answer when they have none.
Sheila (Yorkieville):
Thank you for taking the time to write in my thread and give hope and encouragement when it is needed. I appreciate your efforts and it significantly helps when anyone (including myself) needs a small push forward and confidence.
LOL, I certainly hope my deathbed is not the only time when I find out what is wrong and seek some form of appropriate treatment to ease the pain or whatever else goes on with me. I am hopeful still, even after all of this.
Thank you again for your words of support.
PastorDan: Six Neuros? Well at least you are in good hands now right? Seems to me you have established a great relationship with the latest one. That to me is the most important when you know you can establish a trusting relationship with your doctor, knowing he/she has YOUR best interest at heart.
I had my fourth Neuro with the last visit and frankly, I've had it up to my eyeballs with them. I received two "Possible MS" diagnosis, one "It's not MS, but perhaps CFS" and one "I don't know, but you may have a psychiatric overlap". Good riddance I say. LOL
So hopefully my appointment with the rheumatologist will give me answers. I seen him in 2011 once and now am returning for a follow-up since there's no change and I am still going through whatever I'm going through. I'm still hopeful.
Thank you PastorDan for the time you have taken to write to me and respond in my post.
LuLu: You know you wont be seeing the last of me. LOL. You couldn't be so lucky. :P Thank you for your help, understanding and compassionate listening. It is always needed and you provide it at the right moments.
((Hugs to you))
Immescio: Thank you for writing to me and responding. This forum has immensely helped through my most troubling times. I should say the "people" within it has helped me rather than use the "forum" word so loosely.
((I'll come back and address all the others, I need to take a break))
There are a couple major take aways from this conversation -
first, Lisa, we expect you to go nowhere. Don't make us come hunting you down.
secondly, it can take a long time to find that dx but we all deserve answers.
third - as Wonko and Summrlvr point out, often what looks like MS for so long really is something else and it is critical we be treated for the right disease.
4th - we are not wed to our neurologists. If we feel they are closed to the possibilities then we need to move on to someone with an open minded approach.
5th - to repeat myself, we expect you to still be here.
hugs to you,
Laura
first, Lisa, we expect you to go nowhere. Don't make us come hunting you down.
secondly, it can take a long time to find that dx but we all deserve answers.
third - as Wonko and Summrlvr point out, often what looks like MS for so long really is something else and it is critical we be treated for the right disease.
4th - we are not wed to our neurologists. If we feel they are closed to the possibilities then we need to move on to someone with an open minded approach.
5th - to repeat myself, we expect you to still be here.
hugs to you,
Laura
Lisa,
I wish I could be the cheerleader or informational or supportive soul you've been for so many, or lend just the right words to make this easier. But, I find myself at a loss for words to help anyone these days. Nonetheless, I wanted you to know that I'm just now reading this, and from my heart to yours, I'm truly sorry for the lack of answers you've been given.
Please stick around, and listen to the good advice and thoughts so many extended here.
((((Hugs))))
shell
I wish I could be the cheerleader or informational or supportive soul you've been for so many, or lend just the right words to make this easier. But, I find myself at a loss for words to help anyone these days. Nonetheless, I wanted you to know that I'm just now reading this, and from my heart to yours, I'm truly sorry for the lack of answers you've been given.
Please stick around, and listen to the good advice and thoughts so many extended here.
((((Hugs))))
shell
Hi Lisa,
I am so sorry that you are going through all of this. I truly wish that I could tell you what is wrong. But I really hope that you don't feel I am raining on your parade so to speak, but I did feel compelled to talk to you.
I had a neuro when I first started on this journey that absolutely refused to give me a dx. He kept saying that he thought I had vasculitis (an inflammation of the blood vessels) and he wanted to biopsy my brain. I told him that I had three functioning brain cells left and with my luck he would get two of them.
Anyway, you need to talk to an MS specialist. Believe me, I had symptoms for about 10 years looking back, and it was actually a great relief when I finally had a name to put on what was going on with me. There is no test for MS at this point. The lumbar puncture is hell to go through especially when your doctor is like mine and "forgets" to tell you that you need to be flat on your back for 24 hours and drink a lot of caffeinated beverages to help get the level of the Cerebro-Spinal Fluid back up. I had a screaming headache for about 16 hours thanks to the test. But, I digress.
The point I want to get to is that the O-bands are not definitive. The last stats that I saw were about 70% of the people with MS have these bands but so does about 40% of the general population. Which means that ~30% of the people with MS do not have them and you could easily fall into this category.
So, my suggestion is go here: http://patients.aan.com/findaneurologist/
That is the American Academy of Neurology web site's search engine. You put in your state and the specialty that you need and they give you a list. I used this to find an MS specialist and within 5 minutes of talking to her since i had sent her all of my records ahead of time I had a DX and had a pamphlet on all of the CRABs so I could make a decision.
I really with you luck on your journey and hope that you find out something either way that can help you. My attitude always was if I know what is going on with me I can fight it.
Good luck and please keep us informed on anything you find out!
Jim
I am so sorry that you are going through all of this. I truly wish that I could tell you what is wrong. But I really hope that you don't feel I am raining on your parade so to speak, but I did feel compelled to talk to you.
I had a neuro when I first started on this journey that absolutely refused to give me a dx. He kept saying that he thought I had vasculitis (an inflammation of the blood vessels) and he wanted to biopsy my brain. I told him that I had three functioning brain cells left and with my luck he would get two of them.
Anyway, you need to talk to an MS specialist. Believe me, I had symptoms for about 10 years looking back, and it was actually a great relief when I finally had a name to put on what was going on with me. There is no test for MS at this point. The lumbar puncture is hell to go through especially when your doctor is like mine and "forgets" to tell you that you need to be flat on your back for 24 hours and drink a lot of caffeinated beverages to help get the level of the Cerebro-Spinal Fluid back up. I had a screaming headache for about 16 hours thanks to the test. But, I digress.
The point I want to get to is that the O-bands are not definitive. The last stats that I saw were about 70% of the people with MS have these bands but so does about 40% of the general population. Which means that ~30% of the people with MS do not have them and you could easily fall into this category.
So, my suggestion is go here: http://patients.aan.com/findaneurologist/
That is the American Academy of Neurology web site's search engine. You put in your state and the specialty that you need and they give you a list. I used this to find an MS specialist and within 5 minutes of talking to her since i had sent her all of my records ahead of time I had a DX and had a pamphlet on all of the CRABs so I could make a decision.
I really with you luck on your journey and hope that you find out something either way that can help you. My attitude always was if I know what is going on with me I can fight it.
Good luck and please keep us informed on anything you find out!
Jim
I'm sorry you have no answers. It is very very tough to be ill and have explanation, and no treatment!!
I don't have MS, but had many symptoms compatable with MS, plus my age etc made MS seem like what was going on. I saw many, many, doctors and found the three neurologist I saw were mostly just interested in proving I did not have MS (normal MRI"s) but they were not interested in finding out what I did have, Where as other doctor were looking for on overal explanation and not just at their specialisty (eye doctor, urologist)
It took getting critically ill, and ER docto who was looking at the blood work in front of him, and not just at me as a young and "stressed" women to say "hey, something is really wrong here" thinking outside the box.
a week later I was in the hospital for a bone marrow biopsy to prove My Multiple Myeloma, a very rare diagnosis in a 31 year old women!
just for the record, symptoms of Multiple Myeloma include nerve symptoms, as the elevated protein in blood interferes with the nerve functioning correctly
I hope you can find the right doctor willing to look outside the box, and not just focus on proving what it is not, but willing to go the extra lenght to prove what it is!
I don't have MS, but had many symptoms compatable with MS, plus my age etc made MS seem like what was going on. I saw many, many, doctors and found the three neurologist I saw were mostly just interested in proving I did not have MS (normal MRI"s) but they were not interested in finding out what I did have, Where as other doctor were looking for on overal explanation and not just at their specialisty (eye doctor, urologist)
It took getting critically ill, and ER docto who was looking at the blood work in front of him, and not just at me as a young and "stressed" women to say "hey, something is really wrong here" thinking outside the box.
a week later I was in the hospital for a bone marrow biopsy to prove My Multiple Myeloma, a very rare diagnosis in a 31 year old women!
just for the record, symptoms of Multiple Myeloma include nerve symptoms, as the elevated protein in blood interferes with the nerve functioning correctly
I hope you can find the right doctor willing to look outside the box, and not just focus on proving what it is not, but willing to go the extra lenght to prove what it is!
Lisa, I've been off the forum for a few days as I was away, but I just want to chime in. I can't imagine the complex emotions accompanying that result. I can only add to the chorus of voices saying you absolutely belong on this forum as long as you feel it is of benefit to you. Thinking of you.
Lisa,
I am always amazed when I start rehearing the stories of all my friends here who have been through limbo-hell and continue on, rather than give up and resign themselves to living with all those symptoms. I know you wont give up either, but you may need to step back, gather strength and regroup.Then plunge right back in on the search.
I also want to acknowledge how much you miss Mary - her absence here is felt by all of us.
We'll still see you around, right?
hugs,
Laura
I am always amazed when I start rehearing the stories of all my friends here who have been through limbo-hell and continue on, rather than give up and resign themselves to living with all those symptoms. I know you wont give up either, but you may need to step back, gather strength and regroup.Then plunge right back in on the search.
I also want to acknowledge how much you miss Mary - her absence here is felt by all of us.
We'll still see you around, right?
hugs,
Laura
You know, when I read stories of everyone else's ex-neuros and their supposedly expert judgments, they all sound so similar to mine, among the five (+/-?) I have seen in the past. Giving number 6 time. This guy really seems to be listening, so far. Not only that, but he didn't seem intimidate byd, might've even been appreciative of a patient wwho's do e some homework over the yearz to become informed and conversant in the subject. 6th time's the charm? I du no. Maybe it'll take nine but quit is not on my list right now. Lisa, we continue to appreciate you, and a slew of ithers around here.
Lisa,
I like your attitude-whatever is wrong will be diagnosed. My former Neuro told me that I would die, before anyone figured out what was wrong with me.
I didn't give up-I knew the answer was out there. Like you, I knew it wasn't going to be as timely as I wanted.
I feel that you contribute a lot by staying in this "Forum Family". You set an example for everyone living in Limboland, not to give up.
(((HUGS)))
Sheila
I like your attitude-whatever is wrong will be diagnosed. My former Neuro told me that I would die, before anyone figured out what was wrong with me.
I didn't give up-I knew the answer was out there. Like you, I knew it wasn't going to be as timely as I wanted.
I feel that you contribute a lot by staying in this "Forum Family". You set an example for everyone living in Limboland, not to give up.
(((HUGS)))
Sheila
Lisa, I am terribly sorry for the frustrating position into which you have been thrust. I do wish you could have an answer for all you are experiencing.
I can not understand why so many MS specialists (and I use that word loosely) place so much weight on the results of a lumbar puncture. When I was going through the process my LP came back negative, as did my visual evoked thingy. Between the symptoms I was manifesting and the lesions found on the brain MRI my neurologist made the diagnosis without hesitation. The "specialist" I went to told me it was age (52 yrs. old) and that I was 40 pounds overweight. I went home from that appointment crying and wondering what KoolAid he had drunk.
I said all of that to encourage you to keep your chin up. Find a doctor with whom you click and can have trust. Your answer is out there. Call it, "The Thrill of the Hunt." I am praying for you to have courage, and take heart. God has not lost your address.
Beth
I can not understand why so many MS specialists (and I use that word loosely) place so much weight on the results of a lumbar puncture. When I was going through the process my LP came back negative, as did my visual evoked thingy. Between the symptoms I was manifesting and the lesions found on the brain MRI my neurologist made the diagnosis without hesitation. The "specialist" I went to told me it was age (52 yrs. old) and that I was 40 pounds overweight. I went home from that appointment crying and wondering what KoolAid he had drunk.
I said all of that to encourage you to keep your chin up. Find a doctor with whom you click and can have trust. Your answer is out there. Call it, "The Thrill of the Hunt." I am praying for you to have courage, and take heart. God has not lost your address.
Beth
Lisa,
For over a decade I was told by doctors that I had CFS, CFIDS, and a number of other things that I can't remember right now. Like you I also had no o-bands, and some a-typical lesions in my brain. I have been dealing with this since 1988.
IN the end in 2010 I finally got a PPMS DX after I finally got a spine MRI done that showed a lesion there. IMO any doctor that says you have CFS just doesn't know what is wrong and doesn't want to do the work to find out what is wrong.
Dennis
For over a decade I was told by doctors that I had CFS, CFIDS, and a number of other things that I can't remember right now. Like you I also had no o-bands, and some a-typical lesions in my brain. I have been dealing with this since 1988.
IN the end in 2010 I finally got a PPMS DX after I finally got a spine MRI done that showed a lesion there. IMO any doctor that says you have CFS just doesn't know what is wrong and doesn't want to do the work to find out what is wrong.
Dennis
I ahve been suffeering for years with what my neuro says are cycles. I have 7 new brain lesions he said ;ook ;ike MS and then did the spinal. The spinal came out clean, but I did further investigations into a spinal tap being conclusive in finding and diagnosing MS and it is not always accurate. I even saw a MS world renown (spelling) specialist and she said she can not rule out or diagnose my symptoms as MS either. Well I am not giving up, I refuse to suffer anymore and I will go to every docotor until I have found what it is I actually have and if a doctor plays me off with some trivial answer I will find another one! Maybe I have MS and Maybe I don't but all my doctors see the swelling, the neuropathy, the fatigue, the gait and the lesions, not to mention alot of other symptoms that have grown worse over the last 10 years!
Wonko: I am grateful for your well intentioned, well thought out response to me and your words are so eloquently put together with compassion and understanding. However, I've been tested for Lyme via serum (ELISA) over the course of the years and twice in my CSF Lumbar and each and everytime my results are negative. I can confidently state, that I don't feel that it is Lyme at this time.
Again, thank you for your heart-felt response and taking the time to write to me.
HVAC: I realize you have gone through decades of not knowing and just dealing with whatever you had for a long, long time. You have displayed courage, strength and fortitude in ways that set an example thatmany people should adopt -- living life and not taking a day for granted. Even with your stage IV cancer, I am amazed the outlook you have and stand strong. As a child I was always told that you can either rise above and do the best you can with what you got or allow it to consume you, cripple you and miss out on the important things. People like you are an inspiration. Thank you for your response -- it means a lot to me.
Corriel: Yes, I do have sleep studies here where I live and thank you for mentioning that. Actually, I'm making an appointment with a Rheumatologist that I saw about a year ago and go from there. Perhaps, he can retest some things like my ANA, ESR, CRP, and antidsDNA again due to the fact that it was equivocal at one time,
For now I think I'm just going to get the "right" medication(s) for my symptoms if they exist. Motrin 800 mg helps with severe diffuse myalgia and joint (hip) pain (feels like its dislocated, but I know its not LOL), but not completely. My muscles get to the point of hurting so badly that I can't tell if it's burning or having spasms or just plain old sore. Also burning pain along with tingling and numbness sensation in select fingers on left hand and select toes. I've taken Neurontin on a regular basis to see if it worked and it really didn't. Then I went to taking it whenever it happened. The only thing it did for me is make my ataxia worse.
Anyways, that's my plan for now. See what he thinks, what he comes up with or who he can refer. Thank you again for your input, it is greatly appreciated.
Johnniebear: How could I leave this place? I've been here for years now :) I can not disregard friendships I've made along the way and also feel like I'm contributing and being useful. Shucks, you're all stuck with me. :D
JJ: Thank you for your response and taking the time to write to me. It means a lot that you did so.
Yes I am very happy to have heard that it is absolutely NOT MS. The question is, do I think the doctor's statement is finite? No, I do not.
On two separate MRI reports with comparisons, it has stated that I had increase of lesions and the last one I had in June of 2013, stated that I had a T2 hyperintensity in the lower aspect of the corpus callosum. Although lesion counting isn't the thing to do and MS is a clinical diagnosis along with supportive tests, I will not dismiss it entirely as the doctor did so. Let's just say I'd put it on the back burner, but know that it is most likely not but never say never type deal.
I agree with you when you said that being ok with everything no matter what it is (named or not) is the best route to go. I'll deal with what I have when it happens and go back to not chasing a diagnosis. I took almost 1.5 years off from it and dealt with symptoms as they popped up and I think that is what I will continue to do. Maybe something will pop up along the way, maybe it wont. But I will refuse to let this get me down at this time.
Surely, I was disappointed (again) without the name of whatever it is causing my symptoms and it took a couple of days to come to terms with that, but I'm good now. Onward and forward right? :)
Thank you again JJ.
Yorkieville (Sheila): Thank you for your response and at some point, I believe whatever I have will be discovered. Just not in the timeline that I would like it to be. :) I could never leave this forum nor want to. I hope that whatever I respond to is helpful to those I have written to or at least show that I care and want them to be the best advocate for themselves.
((HUGS))
Lisa
Again, thank you for your heart-felt response and taking the time to write to me.
HVAC: I realize you have gone through decades of not knowing and just dealing with whatever you had for a long, long time. You have displayed courage, strength and fortitude in ways that set an example thatmany people should adopt -- living life and not taking a day for granted. Even with your stage IV cancer, I am amazed the outlook you have and stand strong. As a child I was always told that you can either rise above and do the best you can with what you got or allow it to consume you, cripple you and miss out on the important things. People like you are an inspiration. Thank you for your response -- it means a lot to me.
Corriel: Yes, I do have sleep studies here where I live and thank you for mentioning that. Actually, I'm making an appointment with a Rheumatologist that I saw about a year ago and go from there. Perhaps, he can retest some things like my ANA, ESR, CRP, and antidsDNA again due to the fact that it was equivocal at one time,
For now I think I'm just going to get the "right" medication(s) for my symptoms if they exist. Motrin 800 mg helps with severe diffuse myalgia and joint (hip) pain (feels like its dislocated, but I know its not LOL), but not completely. My muscles get to the point of hurting so badly that I can't tell if it's burning or having spasms or just plain old sore. Also burning pain along with tingling and numbness sensation in select fingers on left hand and select toes. I've taken Neurontin on a regular basis to see if it worked and it really didn't. Then I went to taking it whenever it happened. The only thing it did for me is make my ataxia worse.
Anyways, that's my plan for now. See what he thinks, what he comes up with or who he can refer. Thank you again for your input, it is greatly appreciated.
Johnniebear: How could I leave this place? I've been here for years now :) I can not disregard friendships I've made along the way and also feel like I'm contributing and being useful. Shucks, you're all stuck with me. :D
JJ: Thank you for your response and taking the time to write to me. It means a lot that you did so.
Yes I am very happy to have heard that it is absolutely NOT MS. The question is, do I think the doctor's statement is finite? No, I do not.
On two separate MRI reports with comparisons, it has stated that I had increase of lesions and the last one I had in June of 2013, stated that I had a T2 hyperintensity in the lower aspect of the corpus callosum. Although lesion counting isn't the thing to do and MS is a clinical diagnosis along with supportive tests, I will not dismiss it entirely as the doctor did so. Let's just say I'd put it on the back burner, but know that it is most likely not but never say never type deal.
I agree with you when you said that being ok with everything no matter what it is (named or not) is the best route to go. I'll deal with what I have when it happens and go back to not chasing a diagnosis. I took almost 1.5 years off from it and dealt with symptoms as they popped up and I think that is what I will continue to do. Maybe something will pop up along the way, maybe it wont. But I will refuse to let this get me down at this time.
Surely, I was disappointed (again) without the name of whatever it is causing my symptoms and it took a couple of days to come to terms with that, but I'm good now. Onward and forward right? :)
Thank you again JJ.
Yorkieville (Sheila): Thank you for your response and at some point, I believe whatever I have will be discovered. Just not in the timeline that I would like it to be. :) I could never leave this forum nor want to. I hope that whatever I respond to is helpful to those I have written to or at least show that I care and want them to be the best advocate for themselves.
((HUGS))
Lisa
Lisa,
I truly understand, your frustration, your sadness.
I lived in Limboland, in extreme nerve pain for 6 long years before my dx of MS.
I was relieved, (thankful) to finally have the dx.
I still live with the nerve pain in my spine 24/7.
My best advice to you is not to give up in your search for a dx.
My former Neurologist actually told me that I was going to die, before anyone figured out what was wrong with me.
I wasn't willing to accept his opinion.
Please stay in the forum. I don't post often, but the member of this family have walked my walk with me, and kept my spirits up.
I'll pray that you get a dx soon.
(((HUGS)))
Sheila
I truly understand, your frustration, your sadness.
I lived in Limboland, in extreme nerve pain for 6 long years before my dx of MS.
I was relieved, (thankful) to finally have the dx.
I still live with the nerve pain in my spine 24/7.
My best advice to you is not to give up in your search for a dx.
My former Neurologist actually told me that I was going to die, before anyone figured out what was wrong with me.
I wasn't willing to accept his opinion.
Please stay in the forum. I don't post often, but the member of this family have walked my walk with me, and kept my spirits up.
I'll pray that you get a dx soon.
(((HUGS)))
Sheila
COMMUNITY LEADER
Huge hug for still not having an answer!
I think you could look at this in more than 1 way, it's good news because your MS specialist is so confident, you don't have MS or it's bad news because you didn't get dx, and even though it su_cks big time i hope you choose the positive.
You know a lot more than when you started this journey, no starting over but a continuation of, because your dx journey is not over until the answer is found. At this moment in time, you have a list of conditions that have been (with confidence?) ruled out............so what's left? hmmmmm you should also have a list of diagnosis to account for most, if not all of your sx's and together that should help point towards something, right?
You are a puzzle with a missing piece or two, getting its name right is just one part of the bigger picture and I really dont think that is enough to make anyone feel content or acceptance or peace or what ever term you use. What ever you call that feeling, its still something to aim for because no matter what the dx turns out to be, being ofay with everything that you live with (named or not) is in my humble opinion, still a very important piece to find.
Hugs............JJ
I think you could look at this in more than 1 way, it's good news because your MS specialist is so confident, you don't have MS or it's bad news because you didn't get dx, and even though it su_cks big time i hope you choose the positive.
You know a lot more than when you started this journey, no starting over but a continuation of, because your dx journey is not over until the answer is found. At this moment in time, you have a list of conditions that have been (with confidence?) ruled out............so what's left? hmmmmm you should also have a list of diagnosis to account for most, if not all of your sx's and together that should help point towards something, right?
You are a puzzle with a missing piece or two, getting its name right is just one part of the bigger picture and I really dont think that is enough to make anyone feel content or acceptance or peace or what ever term you use. What ever you call that feeling, its still something to aim for because no matter what the dx turns out to be, being ofay with everything that you live with (named or not) is in my humble opinion, still a very important piece to find.
Hugs............JJ
I completely understand your emotions of not getting a Dx so that a treatment plan can finally be given.
As fellow Limboland since 2009 My MS neuro says I have demyelinating disease however after all these years won't rule MS in or out , there are way to many of us in limboland.
I thought about dropping out of this forum, our dear friend Laura encouraged me to stay and contribute when I can and keep asking questions.
I encourage you to stay, make me a promise that you will stay.
THe support and understanding from this forum has keep me sane
take care
John
..
As fellow Limboland since 2009 My MS neuro says I have demyelinating disease however after all these years won't rule MS in or out , there are way to many of us in limboland.
I thought about dropping out of this forum, our dear friend Laura encouraged me to stay and contribute when I can and keep asking questions.
I encourage you to stay, make me a promise that you will stay.
THe support and understanding from this forum has keep me sane
take care
John
..
Is there a place near you that does sleep studies or testing for sleep apnea?
That might be a starting place to find out about CFS help somewhere near you and maybethat could lead to something?
You have every right to feel discouraged but don't let it consume you because you need to get some answers.
Hang in there!
Corrie
That might be a starting place to find out about CFS help somewhere near you and maybethat could lead to something?
You have every right to feel discouraged but don't let it consume you because you need to get some answers.
Hang in there!
Corrie
Dear Lisa,
Your story is very relatable. While everyone's experience is unique, I went through a difficult time in 2008, when after about a dozen doctors I had no definitive diagnosis or direction from mainstream medicine. I actually had a doctor tell me to go home and pray, which may be good spiritual advice but was a let-down in terms of Western medicine.
I don't know your background or all of your symptoms, but I can glean from this post that you have, at least, paresthesias, balance issues, and fatigue, but not enough clinical evidence that MS is the cause. That is very similar to where I was in 2008.
There is a lot of confusion and misinformation surrounding it, but have you considered Lyme disease? The doctor that finally listened to my health concerns what an internal medicine physician specializing in chronic fatigue and fibromyalgia. He later became a Lyme doctor, because he learned with time that many people labeled as CFS and/or fibro actually have chronic Lyme, a treatable condition.
I'll go out on a limb and suppose that you are 100% certain that you do not/can not have Lyme. If that is the case, then we really do have a lot in common, because I was also certain that chronic Lyme was a made-up disease, and that certainly if I did have Lyme then I would recall a tick bite or I would have tested positive for it.
Despite my skepticism, I had exhausted all other options, and no other doctor was offering a diagnosis of any kind, let alone treatment, so I decided to undergo antibiotics for Lyme. Mind you, at the time I started treatment, I had an abnormal MRI (8 lesions at age 28), constant paresthesias, eye pain and "flashing lights" when I moved my eyes, heat intolerance, relentless fatigue, and more than I can recall or care to write. And my symptoms came/went in a relapse/remit pattern. I was weak as a kitten, was barely holding on to my job (was reduced to part time and using up my leave), and was in constant discomfort if not pain.
To wrap up my story that is becoming longer than I planned: It took a long time, but I responded well to treatment and though I'm not cured completely of all symptoms, I am much much better and back to living life.
If a skeptic like me can look into Lyme, and if a cure is possible, I hope that will help you decide to at least think about it.
Some resources that may interest you: THere is a film that is on Netflix and other stream sites (and probably also YouTube) called "Under Our Skin." There is also an awesome book "Cure Unknown" that is ~$10 for the ebook on amazon, by P Weintraub. She is a scientific writer who went through the same debacle, so the book as a beautiful balance of science, history of Lyme, and personal experience. It was not only her but her entire family who was sick.
There is also a Lyme forum on MedHelp:
http://www.medhelp.org/forums/Lyme-Disease/show/148
And though I don't check this forum often, you can feel free to PM me any questions you have. If you do decide to look into Lyme disease, it is very easy to become overwhelmed and frustrated by the consenting opinions in the medical community and some of the more "out there" patient forums. I know in my case that was a big factor in me dismissing Lyme for as long as I did.
However you decide to pursue your health, I hope you find answers and relief.
I can not thank you all enough for your heartfelt responses and support. You have no idea how this impacts my strength when I find that mine alone isn't good enough at this time.
There is no other choice but to carry on and trudge through the ups and downs of finding a doctor who will actually listen, display some form of empathy (not asking for too much am I?) and help me get to the bottom of this.
The only thing about CFS literature, no where does it state about paresthesias or neuropathy or balance and coordination issues. I just don't understand how I got dismissed so easily based on my LP being negative for 0-bands.
I am well aware that 90% of people have marginally elevated protein, 0-bands and increase synthesis rate displaying a break in the blood brain barrier, but I have a hard time accepting it because the first LP displayed an increase in my IgG synthesis rate. Something was going on. Whether post viral syndrome (had mono twice) caused it, I have no idea.
Again, I feel like I was spun around in circles, blinded and pushed forward not knowing which way to go.
I am at a loss.
This is where I miss Mary (twopack) where she would guide, support, listen, care and give reaffirmation of what I've been through.
I wish someone could tell me what to do now, for I do not have an answer at this time.
Thank you again.
Lisa
There is no other choice but to carry on and trudge through the ups and downs of finding a doctor who will actually listen, display some form of empathy (not asking for too much am I?) and help me get to the bottom of this.
The only thing about CFS literature, no where does it state about paresthesias or neuropathy or balance and coordination issues. I just don't understand how I got dismissed so easily based on my LP being negative for 0-bands.
I am well aware that 90% of people have marginally elevated protein, 0-bands and increase synthesis rate displaying a break in the blood brain barrier, but I have a hard time accepting it because the first LP displayed an increase in my IgG synthesis rate. Something was going on. Whether post viral syndrome (had mono twice) caused it, I have no idea.
Again, I feel like I was spun around in circles, blinded and pushed forward not knowing which way to go.
I am at a loss.
This is where I miss Mary (twopack) where she would guide, support, listen, care and give reaffirmation of what I've been through.
I wish someone could tell me what to do now, for I do not have an answer at this time.
Thank you again.
Lisa
Lisa I am so sorry you are still in limbo. Im sure going back to the drawing board over and over again is no fun. I pray for answers for you and also for strength so that you find it easier to cope. I am a newby here, and your emails have kept me from banging my head against the wall, you don't know how much I appreciate that.
Oh Lisa, I am sorry that you don't have any answers. I cannot begine to imagine what you are going through but I am so happy that you do not have MS.
Even newbies such as myself know and cherish your presence here so I hope you will stay with us. We care about you and would love to be updated on your progress.
Keeping you in my thoughts and prayers for answers to come your way soon.
Hugs,
Corrie
Even newbies such as myself know and cherish your presence here so I hope you will stay with us. We care about you and would love to be updated on your progress.
Keeping you in my thoughts and prayers for answers to come your way soon.
Hugs,
Corrie
I can only imagine how frustrated your feel. Having cra*py days where you can barely move is bad enough when you know why you're having a cra*py day is one thing. Having endless cra*py days with no one able to tell you why is another!
Keep plugging away at it!
Kyle
Keep plugging away at it!
Kyle
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