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NEWBIE Introduction
Hi, Everyone:
I'm brand new here and this is my first post. I hope it isn't too long or rambling!
I'm a 56 year old female living in Vancouver, Canada, married with one son (21).
In 2000, I was diagnosed with fibromyalgia, with all its attendant symptoms.
In 2003, I was diagnosed with SLE (systemic lupus erythematosus), based on positive ANA tests, very high serum creatinine, joint pain and swelling, malar rash ("butterfly rash" across nose and cheeks), extreme fatigue, depression, pleuritic chest pain, high susceptibility to viral and bacterial illnesses (weakened immune system), muscle pain and weakness, , low-grade fever, photosensitivity, Raynaud's phenomenon, and vasculitis. I was put on Hydroxychloroquine for treatment of the symptoms.
Fast forward to 2009/2010: I moved and saw a new rheumatologist, who glanced at my records and said, "You don't have lupus." I asked him, "Well, what do I have?" and he said, "I don't know." End of story. I went back to my family doctor and he has now referred me to another rheumatologist, hopefully one with a better bedside manner and good diagnostic skills.
Over the past year, in addition to my previously noted symptoms, I have developed:
-bladder incontinence; frequent urge to urinate; inability to completely empty bladder
-numbness & tingling in my left 4th & 5th fingers
-numbness, tingling, and severe pain in my feet and toes
-excruciating foot cramps (have never had these before)
-dizziness
-facial numbness
-l'Hermitte's syndrome (a terrible shooting pain just like an electric shock going down my spine when I moved my head forward and down)
-constipation (have never been bothered by this before now)
-balance and coordination problems
-difficulty saying certain words or phrases
-double vision
I saw my family doctor who immediately referred me to a neurologist, and meanwhile ordered a CT head scan and cervical spine x-rays.
Had the CT scan on Tuesday so don't have the results yet.
I saw the neurologist today (after waiting since the end of April for an appointment). He took my history and listened to all my symptoms, then did a neurological exam, after which he ordered nerve conduction studies on my left arm/hand to find a cause of the numbness and tingling there. The results showed an injury to my ulnar nerve (in the elbow groove on the bottom of the arm) with reduction nerve function.
As for the other symptoms, he said that with the diagnosis of lupus (even though the rheumatologist I saw last July said I didn't have lupus), the diagnosis was complicated. He did not mention multiple sclerosis. He did suggest it might be the fibromyalgia which I have had for many years (as mentioned above, I was diagnosed with this in 2000 but had been experiencing symptoms for many years previously, before a diagnosis was made. Had been told it was "all in my head".) He did order an MRI of the head and I was told that there is a "huge" waiting this. I said, "How huge? Will it be done by the end of the year?" and he replied, "Possibly not." Wow. I have all these symptoms, many of which are new, and am in severe pain, and I have to wait until next YEAR for an MRI? Gee, glad it's not an emergency...
If anyone has any comments or suggestions as to what this might be, I would love to hear from you. I'm wondering if it's all just the lupus flaring up, if it's MS, if it's my old buddy fibromyalgia flaring, or something different. I'm even wondering, "Is it all in my head?" (Those words haunt me. They seem so unkind for a doctor to say to a patient.)
Sorry for the long, boring ramble!
Hugs
I'm brand new here and this is my first post. I hope it isn't too long or rambling!
I'm a 56 year old female living in Vancouver, Canada, married with one son (21).
In 2000, I was diagnosed with fibromyalgia, with all its attendant symptoms.
In 2003, I was diagnosed with SLE (systemic lupus erythematosus), based on positive ANA tests, very high serum creatinine, joint pain and swelling, malar rash ("butterfly rash" across nose and cheeks), extreme fatigue, depression, pleuritic chest pain, high susceptibility to viral and bacterial illnesses (weakened immune system), muscle pain and weakness, , low-grade fever, photosensitivity, Raynaud's phenomenon, and vasculitis. I was put on Hydroxychloroquine for treatment of the symptoms.
Fast forward to 2009/2010: I moved and saw a new rheumatologist, who glanced at my records and said, "You don't have lupus." I asked him, "Well, what do I have?" and he said, "I don't know." End of story. I went back to my family doctor and he has now referred me to another rheumatologist, hopefully one with a better bedside manner and good diagnostic skills.
Over the past year, in addition to my previously noted symptoms, I have developed:
-bladder incontinence; frequent urge to urinate; inability to completely empty bladder
-numbness & tingling in my left 4th & 5th fingers
-numbness, tingling, and severe pain in my feet and toes
-excruciating foot cramps (have never had these before)
-dizziness
-facial numbness
-l'Hermitte's syndrome (a terrible shooting pain just like an electric shock going down my spine when I moved my head forward and down)
-constipation (have never been bothered by this before now)
-balance and coordination problems
-difficulty saying certain words or phrases
-double vision
I saw my family doctor who immediately referred me to a neurologist, and meanwhile ordered a CT head scan and cervical spine x-rays.
Had the CT scan on Tuesday so don't have the results yet.
I saw the neurologist today (after waiting since the end of April for an appointment). He took my history and listened to all my symptoms, then did a neurological exam, after which he ordered nerve conduction studies on my left arm/hand to find a cause of the numbness and tingling there. The results showed an injury to my ulnar nerve (in the elbow groove on the bottom of the arm) with reduction nerve function.
As for the other symptoms, he said that with the diagnosis of lupus (even though the rheumatologist I saw last July said I didn't have lupus), the diagnosis was complicated. He did not mention multiple sclerosis. He did suggest it might be the fibromyalgia which I have had for many years (as mentioned above, I was diagnosed with this in 2000 but had been experiencing symptoms for many years previously, before a diagnosis was made. Had been told it was "all in my head".) He did order an MRI of the head and I was told that there is a "huge" waiting this. I said, "How huge? Will it be done by the end of the year?" and he replied, "Possibly not." Wow. I have all these symptoms, many of which are new, and am in severe pain, and I have to wait until next YEAR for an MRI? Gee, glad it's not an emergency...
If anyone has any comments or suggestions as to what this might be, I would love to hear from you. I'm wondering if it's all just the lupus flaring up, if it's MS, if it's my old buddy fibromyalgia flaring, or something different. I'm even wondering, "Is it all in my head?" (Those words haunt me. They seem so unkind for a doctor to say to a patient.)
Sorry for the long, boring ramble!
Hugs
A heartfelt thanks to all of you for your input. I appreciate each and every comment!
Hugs,
BrownEyes54
Hugs,
BrownEyes54
Hi and welcome!
You've been given good advice already concerning the Health Pages and the valuable information even if you are a nurse such as myself.
You also pegged us as a caring community and you are exactly right on that point. Everyone is free to rant, vent, ask questions or simply provide the much needed chuckle as long as it doesn't offend anyone and is not inflammatory in nature.
As for your symptoms. Your list sounds a lot like my symptom list minus the L'Hermitte's and double vision. I was diagnosed with Sjogrens Syndrome for years. Was prescribed and took hydroxychloroquine for 5 years with no improvement in symptoms.
My rheumatologist even admitted that my symptoms did not match a presentation of Sjogrens when the numbness and tingling set in. My PCP finally sent me to a neurologist on an emergent basis after I stood up at my bedside and suddenly fell to my left side , splitting my head open and badly bruising my entire left side.
When I got to the neuro's office that day he told me he thought I had early symptoms of MS. Nice bedside manner when I have blood trickling down my forehead from the staples in my scalp.
Anyway, as I learned from a string of neuros, Sjogrens is a mimic of MS. It took 5 years and 6 neuros to finally make the MS diagnosis. All but the initial neuro and my present neuro thought it was Sjogrens since my MRI only had 2 lesions. Hopefully your journey will be shorter and less convoluted.
See, we all can post LONG answers and questions.
Once again welcome,
Ren
You've been given good advice already concerning the Health Pages and the valuable information even if you are a nurse such as myself.
You also pegged us as a caring community and you are exactly right on that point. Everyone is free to rant, vent, ask questions or simply provide the much needed chuckle as long as it doesn't offend anyone and is not inflammatory in nature.
As for your symptoms. Your list sounds a lot like my symptom list minus the L'Hermitte's and double vision. I was diagnosed with Sjogrens Syndrome for years. Was prescribed and took hydroxychloroquine for 5 years with no improvement in symptoms.
My rheumatologist even admitted that my symptoms did not match a presentation of Sjogrens when the numbness and tingling set in. My PCP finally sent me to a neurologist on an emergent basis after I stood up at my bedside and suddenly fell to my left side , splitting my head open and badly bruising my entire left side.
When I got to the neuro's office that day he told me he thought I had early symptoms of MS. Nice bedside manner when I have blood trickling down my forehead from the staples in my scalp.
Anyway, as I learned from a string of neuros, Sjogrens is a mimic of MS. It took 5 years and 6 neuros to finally make the MS diagnosis. All but the initial neuro and my present neuro thought it was Sjogrens since my MRI only had 2 lesions. Hopefully your journey will be shorter and less convoluted.
See, we all can post LONG answers and questions.
Once again welcome,
Ren
I live in your area, and sent you a message re what I have learned about local resources and the MRI machines in Vancouver
Thank you so much for your compassionate understanding of my health issues. It is indeed a long, frustrating battle, and with the new symptoms coming on top of what I have already been experiencing, sometimes it just seems overwhelming.
This is a wonderful community where people truly CARE, something that does not always happen within the medical community. As a nurse, I do understand the nature and value of tests and examinations prior to making a diagnosis and treatment. As a patient, however, I also understand the need for answers and solutions to current issues such as pain management. I will definitely pursue my options in this regard.
Thanks again for your kindness and empathy. It's absolutely wonderful to know that loving, caring people are out there!
Hugs,
BrownEyes
This is a wonderful community where people truly CARE, something that does not always happen within the medical community. As a nurse, I do understand the nature and value of tests and examinations prior to making a diagnosis and treatment. As a patient, however, I also understand the need for answers and solutions to current issues such as pain management. I will definitely pursue my options in this regard.
Thanks again for your kindness and empathy. It's absolutely wonderful to know that loving, caring people are out there!
Hugs,
BrownEyes
Welcome. You have landed in a wonderful place to ramble on and wonder out loud about what is going on. Quix started a chapter of On and On and On Anon here and we all belong! LOL
First, let's take the "it's in your head" off the table. That is the response of a lazy doctor who hasn't a clue what is going on, doesn't want to be bothered to take the time, and/or is afraid to look bad because finding your answer won't be easy and the doc doesn't want to be seen as a failure. There is a whole crazy side to this statement and it certainly isn't with you. I know it must be hard to set aside, but please try.
Because you have SLE (maybe) or Fibro (maybe) doesn't mean you can't also have another disorder going on. Having one doesn't exclude the other.I'm glad to hear your neuro said it was complicated and not impossible.
Have you contacted the place that does the MRI and requested to be on a waiting list for cancellations? Do it nicely, but let them know you are in pain and nothing can be done until the MRI is complete. You never know - cancellations do happen often at places like this.
The CT is good to look for other things but is of little use in looking at MS. It is important to make sure nothing else is going on the cause the pain, such as your arm.
Your list of symptoms certainly could be neurological in nature, and deserve a further look. In the meantime, talk to these doctors about pain management. They can be experimenting with different drugs to treat your pain while you are waiting for the MRI.
welcome again - I hope we'll see you around often.
be well, Lulu
First, let's take the "it's in your head" off the table. That is the response of a lazy doctor who hasn't a clue what is going on, doesn't want to be bothered to take the time, and/or is afraid to look bad because finding your answer won't be easy and the doc doesn't want to be seen as a failure. There is a whole crazy side to this statement and it certainly isn't with you. I know it must be hard to set aside, but please try.
Because you have SLE (maybe) or Fibro (maybe) doesn't mean you can't also have another disorder going on. Having one doesn't exclude the other.I'm glad to hear your neuro said it was complicated and not impossible.
Have you contacted the place that does the MRI and requested to be on a waiting list for cancellations? Do it nicely, but let them know you are in pain and nothing can be done until the MRI is complete. You never know - cancellations do happen often at places like this.
The CT is good to look for other things but is of little use in looking at MS. It is important to make sure nothing else is going on the cause the pain, such as your arm.
Your list of symptoms certainly could be neurological in nature, and deserve a further look. In the meantime, talk to these doctors about pain management. They can be experimenting with different drugs to treat your pain while you are waiting for the MRI.
welcome again - I hope we'll see you around often.
be well, Lulu
Never be sorry for having a rant on this site....it is what helps us all through..being able to say what we feel with an understanding audience of compassionate people.
Shame this has not been your experience with doctors and it seems all too common that they brush some patients off with "it's all in your head" or perhaps you need to see a psychiatrist.
Your medical journey sounds a rollercoaster of ups and downs, twists and turns and a few surprises along the way and still no definite answers. it feels unbelievable that you have got to wait so long for an MRI and you must be very frustrated.
I am not able to give you an opinion as to whether it could be MS and as you have already been dx'd with other conditions I am sure you must be desperate to know what is really going on.
Have a look at the health pages on this site, and hang around and come back with any futher questions..you will find everyone is very friendly and there are many extremely knowledgeable people with a wealth of different experiences.
Take care, try and keep well and look after yourself
with best wishes and hugs
Sarah x
Shame this has not been your experience with doctors and it seems all too common that they brush some patients off with "it's all in your head" or perhaps you need to see a psychiatrist.
Your medical journey sounds a rollercoaster of ups and downs, twists and turns and a few surprises along the way and still no definite answers. it feels unbelievable that you have got to wait so long for an MRI and you must be very frustrated.
I am not able to give you an opinion as to whether it could be MS and as you have already been dx'd with other conditions I am sure you must be desperate to know what is really going on.
Have a look at the health pages on this site, and hang around and come back with any futher questions..you will find everyone is very friendly and there are many extremely knowledgeable people with a wealth of different experiences.
Take care, try and keep well and look after yourself
with best wishes and hugs
Sarah x
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