Aa
Who has an Alternative Diagnosis??
I beg the forgiveness of our wonderful members who have received other diagnoses, but have stayed around because this is their home. They stand as a permanent reminder to all the Limbolanders that the mimics are common and cannot be ignored. Their presence is one of the ways that this forum is far superior to others.
Please tell us
Date of onset of symptoms -
Number of doctors -
Tip - off to your alternate diagnosis
What kind of doctor and what tests made the diagnosis -
For the "tip - off" examples would be arthritis, coughing (Lyme), dry eyes and mouth (Sjogrens), MRI (Spondylopathy)
arthritis and rash (Still's Disease), etc.
Quix
Please tell us
Date of onset of symptoms -
Number of doctors -
Tip - off to your alternate diagnosis
What kind of doctor and what tests made the diagnosis -
For the "tip - off" examples would be arthritis, coughing (Lyme), dry eyes and mouth (Sjogrens), MRI (Spondylopathy)
arthritis and rash (Still's Disease), etc.
Quix
Hi Quix, I’m back! :o) (Not sure for how long though, considering the feathers I ruffled last spring.)
I couldn’t resist adding my 2 cents to this fascinating thread.
I have a suggestion for those who carry dual diagnoses (like MS + fibro or MS + RA): You should really consider having a Lyme Western blot run and, like Speechgeek wrote, ask the Dr. WHICH BANDS ARE POSITIVE–the ones that are specific to borreliosis are # 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 83-93. You had a negative ELISA test? It means nada.
Here are some conditions Lyme can mimic:
MS
ALS
CFS
Fibromyalgia
Systemic Lupus
Rheumatoid Arthritis
Parkinson’s
Alzheimer’s
Tendinitis, Bursitis, Carpal tunnel syndrome, Tennis elbow
Scleroderma
Guillain-Barré Syndrome
Infectious Mononucleosis
Bell’s Palsy
Irritable Bowell Syndrome
Sleep apnea
Mitral valve relapse
Coronary artery disease, heart failure, heart palpitations
Chronic pain syndrome
Endometriosis
Polycystic ovary syndrome
Etc.
Americans should be especially aware of Lyme disease. When even the CDC admits that there are over 200 000 NEW cases of Lyme disease every year in the US, one has to seriously consider looking beyond MS.
I couldn’t resist adding my 2 cents to this fascinating thread.
I have a suggestion for those who carry dual diagnoses (like MS + fibro or MS + RA): You should really consider having a Lyme Western blot run and, like Speechgeek wrote, ask the Dr. WHICH BANDS ARE POSITIVE–the ones that are specific to borreliosis are # 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 83-93. You had a negative ELISA test? It means nada.
Here are some conditions Lyme can mimic:
MS
ALS
CFS
Fibromyalgia
Systemic Lupus
Rheumatoid Arthritis
Parkinson’s
Alzheimer’s
Tendinitis, Bursitis, Carpal tunnel syndrome, Tennis elbow
Scleroderma
Guillain-Barré Syndrome
Infectious Mononucleosis
Bell’s Palsy
Irritable Bowell Syndrome
Sleep apnea
Mitral valve relapse
Coronary artery disease, heart failure, heart palpitations
Chronic pain syndrome
Endometriosis
Polycystic ovary syndrome
Etc.
Americans should be especially aware of Lyme disease. When even the CDC admits that there are over 200 000 NEW cases of Lyme disease every year in the US, one has to seriously consider looking beyond MS.
I've learned so much from this journey we are in together. I'm glad we are a big melting pot of mixed dx's and undx'd. I do wish for answers every day for those who don't know, but I know it's what has brought us all together, here, in this very spot, in 1st place.
I don't want to change up the discussion, but wanted to say this. I cherish our multi-faceted home we've got here....
xoxoxo
Shell
I don't want to change up the discussion, but wanted to say this. I cherish our multi-faceted home we've got here....
xoxoxo
Shell
I did forget to include, that while I was seeing the neurologist in 2007, he did diagnose me with Spondylolisthesis and Degenerative Disc Disease which did explain the numbness and tingling in my limbs. PT took care of a lot the Spondylolisthesis problems and I continue the therapy at home…not really something I think about much since PT worked so well, but I should have included it.
Once that part of my symptom list was solved, we still needed to focus on the fatigue, cognitive problems, facial numbness, digestive issues…blah, blah, blah...so that was when I was sent to the rheumatologist.
I still have great respect for my neurologist for admitting he didn't understand my blood test results and then sending me to the rheumy.
I would like to add that the immunologist at the CC asked a lot of specific questions about certain symptoms, narrowing down each symptom, something no other doctor had done.
Through all of this, Lupus was brought up often but it wasn’t a major consideration until this past summer when, after a day of cycling in the sun, I broke out in a rash that covered my entire body. Prior to that I had not really been photosensitive.
The feeling of COMFORT I felt once the doctor at the CC said he would start my treatment was something I wish everyone could feel…finally being told “THIS is what it is and THIS is what we are going to do” is wonderful.
Undifferentiated Connective Tissue Disease, Spondylolisthesis, and Degenerative Disc Disease ultimately were the answers I was given for the ridiculously long list of symptoms I had.
Wellness to All,
Wanna :o)
Once that part of my symptom list was solved, we still needed to focus on the fatigue, cognitive problems, facial numbness, digestive issues…blah, blah, blah...so that was when I was sent to the rheumatologist.
I still have great respect for my neurologist for admitting he didn't understand my blood test results and then sending me to the rheumy.
I would like to add that the immunologist at the CC asked a lot of specific questions about certain symptoms, narrowing down each symptom, something no other doctor had done.
Through all of this, Lupus was brought up often but it wasn’t a major consideration until this past summer when, after a day of cycling in the sun, I broke out in a rash that covered my entire body. Prior to that I had not really been photosensitive.
The feeling of COMFORT I felt once the doctor at the CC said he would start my treatment was something I wish everyone could feel…finally being told “THIS is what it is and THIS is what we are going to do” is wonderful.
Undifferentiated Connective Tissue Disease, Spondylolisthesis, and Degenerative Disc Disease ultimately were the answers I was given for the ridiculously long list of symptoms I had.
Wellness to All,
Wanna :o)
Ess, I can relate to your interest in finding a good Lyme site. Unfortunately, I think I agree with Rebeccah that it's tough to find a good "home" because there is such disparity between the two camps. I agree with her that as a patient, one can feel trapped in the middle.
I've been using my library access through work to try and research Lyme, and everything I read from conventional medicine strongly opposes what my LLMD discussed with me. At the same time, my LLMD said some things with which I fundamentally disagree. But I feel I have to take some of that extra baggage as a grain of salt. I can't get treatment otherwise.
There is a very active site called Lymenet (you can add "dot org" to that). To me, it is a mixed bag. When I first went there, I was really upset because at the top of the posts was i) what to do once you are out of money for treatment (since again, many Lyme patients need to see LLMD's off of insurance and get treatment that is also not covered) and ii) suicide hotlines! It took me a couple of days to go back and start reading more.
In my opinion, which is not worth much, Lymenet is a mixed bag. While there is some good info and well informed people there,. some of the ideas are outside of what I can understand and with which I can agree.
I tried to find an in-person local support group, but the organizer left a message that they are "all too sick" to meet anymore, which was also a bummer. Rebeccah's book suggestion is a good one, another one I've been recommended is "The Lyme Disease Solution" by Kenneth Singleton. I am working on getting both for myself!
There is also a documentary getting a lot of buzz called "Under Our Skin," and if you add "*******" to that title you'll find the website, which has the trailer and info about the film. I tried to go to a screening north of Baltimore and got hopelessly lost and upset, so I'm waiting for the DVD now, which I've asked to get for Christmas!
I think I mentioned it before, but I was interested to see that the Lyme controversy was even addressed in a news item in Nature Medicine, 14, 1135-1139 (1 November 2008). It's one of the few conventional publications I've seen that strays from the "2 weeks of antibiotics" camp.
On the other side, Neurology, Vol. 70, Issue 13, 986-987 (25 March 2008) Prolonged Lyme disease treatment: Enough is enough.
Ess, dear, if YOU come across anything information that you find helpful, please do pass it on to us! I've really been trying to learn and stay objective, but it's difficult!
I've been using my library access through work to try and research Lyme, and everything I read from conventional medicine strongly opposes what my LLMD discussed with me. At the same time, my LLMD said some things with which I fundamentally disagree. But I feel I have to take some of that extra baggage as a grain of salt. I can't get treatment otherwise.
There is a very active site called Lymenet (you can add "dot org" to that). To me, it is a mixed bag. When I first went there, I was really upset because at the top of the posts was i) what to do once you are out of money for treatment (since again, many Lyme patients need to see LLMD's off of insurance and get treatment that is also not covered) and ii) suicide hotlines! It took me a couple of days to go back and start reading more.
In my opinion, which is not worth much, Lymenet is a mixed bag. While there is some good info and well informed people there,. some of the ideas are outside of what I can understand and with which I can agree.
I tried to find an in-person local support group, but the organizer left a message that they are "all too sick" to meet anymore, which was also a bummer. Rebeccah's book suggestion is a good one, another one I've been recommended is "The Lyme Disease Solution" by Kenneth Singleton. I am working on getting both for myself!
There is also a documentary getting a lot of buzz called "Under Our Skin," and if you add "*******" to that title you'll find the website, which has the trailer and info about the film. I tried to go to a screening north of Baltimore and got hopelessly lost and upset, so I'm waiting for the DVD now, which I've asked to get for Christmas!
I think I mentioned it before, but I was interested to see that the Lyme controversy was even addressed in a news item in Nature Medicine, 14, 1135-1139 (1 November 2008). It's one of the few conventional publications I've seen that strays from the "2 weeks of antibiotics" camp.
On the other side, Neurology, Vol. 70, Issue 13, 986-987 (25 March 2008) Prolonged Lyme disease treatment: Enough is enough.
Ess, dear, if YOU come across anything information that you find helpful, please do pass it on to us! I've really been trying to learn and stay objective, but it's difficult!
Ess
I can honestly say that I have yet to find a "home" in the lyme community. I encourage everyone to read "the cure unknown" I am a speech therapist that practices "evidence based treatments that is well researched treatments. I like to read things that reference primary sources. Pamela Wientraub did this with this book. She is medical writer and editor..her ENTIRE family got lyme. EXCELLENT book. I have read 10-15 different books and this is the best. I call it "lyme for dummies" This book helped me understand why there is all the hype and yelling. Lyme is very contraversial and it ***** being stuck in the midst of all of it.
I have joined my local and state support group and that has been much better than the web groups for me. I also do a lot of reading and bounce things off my partner in lyme crime Stacie (soonermom). Stacie maybe able to offer up some of the forums that have worked for her.
Take Care
Rebeccah
I can honestly say that I have yet to find a "home" in the lyme community. I encourage everyone to read "the cure unknown" I am a speech therapist that practices "evidence based treatments that is well researched treatments. I like to read things that reference primary sources. Pamela Wientraub did this with this book. She is medical writer and editor..her ENTIRE family got lyme. EXCELLENT book. I have read 10-15 different books and this is the best. I call it "lyme for dummies" This book helped me understand why there is all the hype and yelling. Lyme is very contraversial and it ***** being stuck in the midst of all of it.
I have joined my local and state support group and that has been much better than the web groups for me. I also do a lot of reading and bounce things off my partner in lyme crime Stacie (soonermom). Stacie maybe able to offer up some of the forums that have worked for her.
Take Care
Rebeccah
Lyme disease, untreated or unrecognized, seems more and more like a horror the more I read about it. This got double emphasis when I found that a young girl I know slightly has chronic Lyme with terrible neurological consequences.
Fortunately for me I don't have this scourge, but I'm very interested in it all the same. Since I know that it's extremely--to say the least--controversial, I'm wondering what Web sites or forums provide accurate info without all the hype, yelling and polarization. Can anyone point me in that direction?
Thanks muchly,
ess
Fortunately for me I don't have this scourge, but I'm very interested in it all the same. Since I know that it's extremely--to say the least--controversial, I'm wondering what Web sites or forums provide accurate info without all the hype, yelling and polarization. Can anyone point me in that direction?
Thanks muchly,
ess
You've done people with MS,
people in limbo,
people with other stuff,
starting up people with dual (triple, quadruple) diagnoses,
How about the wonderful people like Elaine who are the loved ones of people who fall into the other categories?
people in limbo,
people with other stuff,
starting up people with dual (triple, quadruple) diagnoses,
How about the wonderful people like Elaine who are the loved ones of people who fall into the other categories?
Wow, I just reread this thread and I am still amazed at what you all have done with it! Last night I had just come in form an 80 mile trip yesterday after getting my OCT test on my eyes. I was so tired I was in tatters. But, I was thrilled with this thread and wanted to say something.
BUT - now that I reread my comments I see that I really didn't say what I wanted to say.
First, from the very beginning you all saw what this thread was getting at. Wanna really set the tone when she took us through her journey from suspecting she might have MS, to the ID doc, and eventually to the Immunologist that saw that she has an autoimmune process. I was with her most of the way on this and I saw how really important it is to keep after the docs and the results you are getting. Because she was willing to run all the way through the "Twelve Days of Diagnosis" she made it down to a real answer. Whenever I try to think through someone's history who looks like they are goning to end up with a Mimic, I think of Wanna.
I meant to write that paragraph last night and was too befuddled to get my thoughts straight. Sorry, Wanna. It was your post that prompted my comments last night in the first place.
Then I looked at the garbled comments I made about "teasing out" a diagnosis from a list of symptoms. I think my comment sounded mocking. If it did I am so sorry. In the beginning all any of us have is a list of symptoms to compare to possible causes. But, there is SOoooo much overlap in so many diseases that everything can look like MS. So, the neurologists and we have to start looking for tip-offs to other things.
Rebeccah has a lot of symptoms that would sound like MS - and indeed she did begin with us. But, other things weren't typical of MS like her diffuse paresthesias, her body-wide and constant fasciculations, her thirst, and her joint pain that jumped around. Those spoke more to a systemic process or an infection.
I hope the others will follow Wanna's and others' lead in describing the things that made their problems stand out as something other than MS.
Now what other groups are we missing? I want to have a survey (count off) for all the different groups that participate here.
Quix
BUT - now that I reread my comments I see that I really didn't say what I wanted to say.
First, from the very beginning you all saw what this thread was getting at. Wanna really set the tone when she took us through her journey from suspecting she might have MS, to the ID doc, and eventually to the Immunologist that saw that she has an autoimmune process. I was with her most of the way on this and I saw how really important it is to keep after the docs and the results you are getting. Because she was willing to run all the way through the "Twelve Days of Diagnosis" she made it down to a real answer. Whenever I try to think through someone's history who looks like they are goning to end up with a Mimic, I think of Wanna.
I meant to write that paragraph last night and was too befuddled to get my thoughts straight. Sorry, Wanna. It was your post that prompted my comments last night in the first place.
Then I looked at the garbled comments I made about "teasing out" a diagnosis from a list of symptoms. I think my comment sounded mocking. If it did I am so sorry. In the beginning all any of us have is a list of symptoms to compare to possible causes. But, there is SOoooo much overlap in so many diseases that everything can look like MS. So, the neurologists and we have to start looking for tip-offs to other things.
Rebeccah has a lot of symptoms that would sound like MS - and indeed she did begin with us. But, other things weren't typical of MS like her diffuse paresthesias, her body-wide and constant fasciculations, her thirst, and her joint pain that jumped around. Those spoke more to a systemic process or an infection.
I hope the others will follow Wanna's and others' lead in describing the things that made their problems stand out as something other than MS.
Now what other groups are we missing? I want to have a survey (count off) for all the different groups that participate here.
Quix
Date of Onset: September/ October 2007
Number of doctors: PCP( many appointments), Neurologist, otolaryngologist, rheumatologist, infectious disease, 2 additional neurologist at John’s Hopkins
Tests:
MRI- brain, c-spine, lumbar, thoracic- Normal
NVC/ Emg- Axonal peripheral Neuropathy ¾ limbs
Veng-Normal
Vitamin D low back to normal after treatment then low again
Western blot IGM band 23 positive
EBV titers 2110, CMV elevate
Blood work ANA, SEd Rate, Sojrens Running CD-57, Lyme ABS titer, Lyme Western blot titer, Bartonella titers Babesia microti titers, Babesia WA-1 titer, Ehrlichia titers, RMSF titers
I was told Possible ALS, atypical MS, Vitamin D deficiency, migraine disorder, chronic fatigue /fibro myalgia
Symptoms
I was having muscle fasiculations and twitching over every inch of my body a 100 or more an hour in my stomach, bladder, back, feet, hands, legs, arms everywhere!
Can’t stand for more than 15 seconds
Visual tracking and visual processing problems
Sometimes when I blink I feel like my eyelids may not open back up
Arms and legs feel like lead
I can no longer go to stores and shop. Due to leg fatigue
I cannot tell if I am putting enough pressure on the gas peddle
Face is numb and burning on right cheek and neck, left side of nose and left eye.
Balance is terrible falling into things
Fine motor coordination in both arms and hand terrible, bilateral tingle in my hands
Carrying things like my coat fatigues my arms bilaterally, holding a baby in my arms
fatigued bilaterally
Joint pain in my hands that jumps around bilaterally
Dysfluent
Word retrieval problems
When I stretch my muscles don’t relax
When I smile I feel like my face is stuck
I feel like I have a blood pressure cuff on my arms
Cannot work a full week at work
Hands and feet burn
Calves and biceps hurt
Light sensitivity
Vision blurred
Lower back sore
Very thirsty all the time drinking water all day
Neck really hurt/sore fatigue/ have to drive with a pillow behind my head.
Cannot tolerate the weight of the blankets on my feet at night it hurts
Final Diagnosis: Lyme disease…Not CDC positive because only one band.. band 23 igm Taking 3000mg of amox and now have 95% normal function. Known tick bite in June 2007 Completley disregarded.
Those with lyme are at risk for developing other Dx such as lupus, MS, Parkinson's etc. For those that had negative lyme tests.... the question is NOT " Is my western blot positive or negative." the question is " Did ANY bands come back positive on my western blot." I was told repeatedly my western blot was negative until I asked that question.
I should also mention that with ALL of those symptoms I could not get anyone to do an LP.
That's my story
Rebeccah
Number of doctors: PCP( many appointments), Neurologist, otolaryngologist, rheumatologist, infectious disease, 2 additional neurologist at John’s Hopkins
Tests:
MRI- brain, c-spine, lumbar, thoracic- Normal
NVC/ Emg- Axonal peripheral Neuropathy ¾ limbs
Veng-Normal
Vitamin D low back to normal after treatment then low again
Western blot IGM band 23 positive
EBV titers 2110, CMV elevate
Blood work ANA, SEd Rate, Sojrens Running CD-57, Lyme ABS titer, Lyme Western blot titer, Bartonella titers Babesia microti titers, Babesia WA-1 titer, Ehrlichia titers, RMSF titers
I was told Possible ALS, atypical MS, Vitamin D deficiency, migraine disorder, chronic fatigue /fibro myalgia
Symptoms
I was having muscle fasiculations and twitching over every inch of my body a 100 or more an hour in my stomach, bladder, back, feet, hands, legs, arms everywhere!
Can’t stand for more than 15 seconds
Visual tracking and visual processing problems
Sometimes when I blink I feel like my eyelids may not open back up
Arms and legs feel like lead
I can no longer go to stores and shop. Due to leg fatigue
I cannot tell if I am putting enough pressure on the gas peddle
Face is numb and burning on right cheek and neck, left side of nose and left eye.
Balance is terrible falling into things
Fine motor coordination in both arms and hand terrible, bilateral tingle in my hands
Carrying things like my coat fatigues my arms bilaterally, holding a baby in my arms
fatigued bilaterally
Joint pain in my hands that jumps around bilaterally
Dysfluent
Word retrieval problems
When I stretch my muscles don’t relax
When I smile I feel like my face is stuck
I feel like I have a blood pressure cuff on my arms
Cannot work a full week at work
Hands and feet burn
Calves and biceps hurt
Light sensitivity
Vision blurred
Lower back sore
Very thirsty all the time drinking water all day
Neck really hurt/sore fatigue/ have to drive with a pillow behind my head.
Cannot tolerate the weight of the blankets on my feet at night it hurts
Final Diagnosis: Lyme disease…Not CDC positive because only one band.. band 23 igm Taking 3000mg of amox and now have 95% normal function. Known tick bite in June 2007 Completley disregarded.
Those with lyme are at risk for developing other Dx such as lupus, MS, Parkinson's etc. For those that had negative lyme tests.... the question is NOT " Is my western blot positive or negative." the question is " Did ANY bands come back positive on my western blot." I was told repeatedly my western blot was negative until I asked that question.
I should also mention that with ALL of those symptoms I could not get anyone to do an LP.
That's my story
Rebeccah
date onset: pre 2000 (2000 went to doc for first complalints)
number doctors: 17 of various types (7 being neurologists)
tip off: lesions did not add up to all my cerebellar and autonomic ssx
tests and docs: ms sppecialists, movement disorder specialists, neuro-otolyrnologist, ms neuros, neg LP's.(2), mri (10+) lesionsand cerebellar and global atrophy and hot cross bun sign, brain biopsy, psyciatrist (ruled out conversion disorder) well duh! my biopsy showed organic disease.
many geneiitics test(to date none pos, but only can test for SCA that are identied to date)
VNG
dx as of today: ms; cerebella r ataxia (verdicttt still out on cause), my ataxia is my more prominante disease.
still my my gut instinct believe this will end up showing to be some hereditry . too many 'weird and 'offf' things in family hisotry.
number doctors: 17 of various types (7 being neurologists)
tip off: lesions did not add up to all my cerebellar and autonomic ssx
tests and docs: ms sppecialists, movement disorder specialists, neuro-otolyrnologist, ms neuros, neg LP's.(2), mri (10+) lesionsand cerebellar and global atrophy and hot cross bun sign, brain biopsy, psyciatrist (ruled out conversion disorder) well duh! my biopsy showed organic disease.
many geneiitics test(to date none pos, but only can test for SCA that are identied to date)
VNG
dx as of today: ms; cerebella r ataxia (verdicttt still out on cause), my ataxia is my more prominante disease.
still my my gut instinct believe this will end up showing to be some hereditry . too many 'weird and 'offf' things in family hisotry.
Wow, this really is an interesting discussion!
I would also like to hear from people who carry dual (or more) diagnoses, like MS and Fibromyalgia or MS and RA. What were the clues that led to the determination that other processes were going on? (like Rebeccah and her O-Bands or Sara and her mitral valve disease)?
That may need to be a separate question.
There is no reason in the world why an unlucky person could not have two or three concurrent illnesses, especially where infections are concerned. People with Lyme could certainly develop MS and vice versa.
Stacy, Wonko, and Rebeccah - your stories are very important and persuasive. Those "other" symptoms that are very common with Lyme disease ((joint pain, family members being ill a the same time, heart murmur, cough, rashes (not just the Bull's Eye rash) and things like "interstitial cystitis" or Bell's Palsy)).
I think this is fascinating, and it gives us clues to how the diagnosis of MS must be teased out. So many people think that if all of them symptoms appear in the list of common MS symptoms that they MUST have MS.
I hope everyone finally gets a place to post.
Quix
I would also like to hear from people who carry dual (or more) diagnoses, like MS and Fibromyalgia or MS and RA. What were the clues that led to the determination that other processes were going on? (like Rebeccah and her O-Bands or Sara and her mitral valve disease)?
That may need to be a separate question.
There is no reason in the world why an unlucky person could not have two or three concurrent illnesses, especially where infections are concerned. People with Lyme could certainly develop MS and vice versa.
Stacy, Wonko, and Rebeccah - your stories are very important and persuasive. Those "other" symptoms that are very common with Lyme disease ((joint pain, family members being ill a the same time, heart murmur, cough, rashes (not just the Bull's Eye rash) and things like "interstitial cystitis" or Bell's Palsy)).
I think this is fascinating, and it gives us clues to how the diagnosis of MS must be teased out. So many people think that if all of them symptoms appear in the list of common MS symptoms that they MUST have MS.
I hope everyone finally gets a place to post.
Quix
oooh! oooh! (Raising my hand in class even though the bell is about to ring) It came to mind to add what probably could/should have been a tip off:
When I first went to my doctor in Jan '08 she noticed a heart murmur, which a 2d echo study showed was being caused by mitral regurgitation. My PCP passed it off as no big deal, so I didn't really connect it to my other problems at the time.
I only recently re-connected that dot and realized that the murmur (she also called it palpitations, though again she was very blase about it so I didn't worry at all...) could have been a bigger clue in the hands of a better detective.
In general, my PCP seemed weird like that: Most of my tests were coming back normal, yet she seemed to brush off the few that came back abnormal.
Just another tidbit to throw out there.
When I first went to my doctor in Jan '08 she noticed a heart murmur, which a 2d echo study showed was being caused by mitral regurgitation. My PCP passed it off as no big deal, so I didn't really connect it to my other problems at the time.
I only recently re-connected that dot and realized that the murmur (she also called it palpitations, though again she was very blase about it so I didn't worry at all...) could have been a bigger clue in the hands of a better detective.
In general, my PCP seemed weird like that: Most of my tests were coming back normal, yet she seemed to brush off the few that came back abnormal.
Just another tidbit to throw out there.
Date of onset of symptoms - Summer 2007
Number of doctors:
- 3 neuros (one out of state at a university), 1 neuro-ophthamologist, 1 rheumie, 1 PCP.
Tip - off to your alternate diagnosis:
Onset of new symptoms in Fall '08 including the sudden appearance of fatigue, wide-spread bilateral joint pain and stiffness, and nausea. This was more than a year after the onset of my symptoms, which were largely sensory and thought to be neurological by my doctors.
What kind of doctor and what tests made the diagnosis:
I went to see a "LLMD," or Lyme literate MD. I had to pay out of pocket to see this doctor, and for the tests ordered.
I am still waiting for the test results, but was given a clinical diagnosis of Lyme at my 1st appointment. I do live in an endemic area, and started to have symptoms around the time I moved here. I don't recall a bite or rash, and I am a very indoor-sy person (no camping or hiking for me, thank you!). I have about 8 brain MRI lesions, non-enhancing and unchanged btw. Feb and July '08. My LP was negative for both MS and Lyme. I had two Lyme ELISA tests in Jan and July '08, both of which were negative.
My LLMD is concerned that I could have more than one process going on. The delay in diagnosis and treatment can cause additional problems as well as complicate recovery.
While I've been advised (by neuros) to have repeat MRIs, I at this time do not plan on returning to a neurologist unless I experience new/progressed neuro symptoms. I've been reading about brain lesions in Lyme, and it is a poorly understood topic. From what I've been able to find, it is not known if the mechanism leading to damage by Lyme is vascular or demyelinating, and it is not known if damage can be stopped or reversed with treatment. I worry that this poor understanding would complicate interpretation of any future MRIs. I do not want to get a wrong diagnosis!
I'd also like to comment (and hopefully not cause any upset in doing so) on the use of steroids in undiagnosed patients. I would urge anyone offered steroids to make darn well sure that they do not have Lyme, as steroids supress the immune system and are therefore horrible to give to Lyme patients. Note, steroids may offer short-term symptom relief, but if you do have Lyme, they will make it worse in the long run. (I was on prednisone in August and wonder if/how it contributed to the additional symptoms I developed this Fall.)
It's kinda funny I advise to make "darn well sure" about Lyme above, because to this day I'm still not sure how to do that! I really thought it had been properly ruled out in my case. It was not until I had developed more symptoms that I finally came back around to consider it as possible. And again, once I made that choice, I had to commit to it by going "off the radar" (and out of pocket) to an LLMD. I am going against the advice of all of the doctors and specialists I list above. Opinions on Lyme are strongly polarized, and it seems the opposing sides can't reach any middle ground. (SOONERMOM hits on this above when she talks about feeling the need to lie about Lyme treatment.) All this amidst transitioning to part time at work becuase I am not well enough for fulltime.
I still stuggle with my choice and the emotional fallout of starting treatment. I'll have a couple of good days and want to take the world on full force, followed by some bad days where I wonder if I'm really on the right track.
I'll be sure to update as my test results come in and my treatment continues...I really hope this is my answer!
Oh, and in response to Bio, I think the bogus alternative diagnosis issue should be yet another thread, to which I could also contribute :)
Number of doctors:
- 3 neuros (one out of state at a university), 1 neuro-ophthamologist, 1 rheumie, 1 PCP.
Tip - off to your alternate diagnosis:
Onset of new symptoms in Fall '08 including the sudden appearance of fatigue, wide-spread bilateral joint pain and stiffness, and nausea. This was more than a year after the onset of my symptoms, which were largely sensory and thought to be neurological by my doctors.
What kind of doctor and what tests made the diagnosis:
I went to see a "LLMD," or Lyme literate MD. I had to pay out of pocket to see this doctor, and for the tests ordered.
I am still waiting for the test results, but was given a clinical diagnosis of Lyme at my 1st appointment. I do live in an endemic area, and started to have symptoms around the time I moved here. I don't recall a bite or rash, and I am a very indoor-sy person (no camping or hiking for me, thank you!). I have about 8 brain MRI lesions, non-enhancing and unchanged btw. Feb and July '08. My LP was negative for both MS and Lyme. I had two Lyme ELISA tests in Jan and July '08, both of which were negative.
My LLMD is concerned that I could have more than one process going on. The delay in diagnosis and treatment can cause additional problems as well as complicate recovery.
While I've been advised (by neuros) to have repeat MRIs, I at this time do not plan on returning to a neurologist unless I experience new/progressed neuro symptoms. I've been reading about brain lesions in Lyme, and it is a poorly understood topic. From what I've been able to find, it is not known if the mechanism leading to damage by Lyme is vascular or demyelinating, and it is not known if damage can be stopped or reversed with treatment. I worry that this poor understanding would complicate interpretation of any future MRIs. I do not want to get a wrong diagnosis!
I'd also like to comment (and hopefully not cause any upset in doing so) on the use of steroids in undiagnosed patients. I would urge anyone offered steroids to make darn well sure that they do not have Lyme, as steroids supress the immune system and are therefore horrible to give to Lyme patients. Note, steroids may offer short-term symptom relief, but if you do have Lyme, they will make it worse in the long run. (I was on prednisone in August and wonder if/how it contributed to the additional symptoms I developed this Fall.)
It's kinda funny I advise to make "darn well sure" about Lyme above, because to this day I'm still not sure how to do that! I really thought it had been properly ruled out in my case. It was not until I had developed more symptoms that I finally came back around to consider it as possible. And again, once I made that choice, I had to commit to it by going "off the radar" (and out of pocket) to an LLMD. I am going against the advice of all of the doctors and specialists I list above. Opinions on Lyme are strongly polarized, and it seems the opposing sides can't reach any middle ground. (SOONERMOM hits on this above when she talks about feeling the need to lie about Lyme treatment.) All this amidst transitioning to part time at work becuase I am not well enough for fulltime.
I still stuggle with my choice and the emotional fallout of starting treatment. I'll have a couple of good days and want to take the world on full force, followed by some bad days where I wonder if I'm really on the right track.
I'll be sure to update as my test results come in and my treatment continues...I really hope this is my answer!
Oh, and in response to Bio, I think the bogus alternative diagnosis issue should be yet another thread, to which I could also contribute :)
Great post, Quix!
It's interesting to learn about the mimics. Being undx, I always research the different diseases our members have been dx with.
My symptoms still don't really match up with any of the mimics, as close as they do with MS, but who knows. Maybe someday, I will have my answers.
Thanks again, Quix.
It's interesting to learn about the mimics. Being undx, I always research the different diseases our members have been dx with.
My symptoms still don't really match up with any of the mimics, as close as they do with MS, but who knows. Maybe someday, I will have my answers.
Thanks again, Quix.
Date of onset of symptoms - October 2007
Number of doctors
- 10 Total , 4 neuros (1 MS Specialist), 1 opthalmologist (MS spec. wife), 1 Rheumie, my GP, 1 urgent care, talked to an Infectious Disease Dr., and my Lyme Dr.
Tip - off to your alternate diagnosis-
joint pain and hubby started having similar numbness/spasticity
What kind of doctor and what tests made the diagnosis
Unfortunately, I had to request the Western Blot for lyme myself. When it came back CDC positive, all the doctors that I spoke with either ignored it altogether or told me that lyme disease didn't exist in my state. The Infectious Disease doctor (who had treated lyme back east) told me that it would be considered too controversial to treat someone for neuro-lyme in OK (because it doesn't exist). I had to go out of state to actually get a "diagnosis" for lyme by a doctor that specializes in tick borne illness. (we had built a house out on acreage in 2003 and had both been exposed to numerous tick bites year after year)
MRI- numerous white matter lesions (@13) most and largest on the right side, hence the mostly left sided neuro symptoms---C-spine MRI- showed no lesions
LP- 1 O-band in CSF, none in serum
Reflexes- last exam (5/08) showed left knee:4+ left ankle:3+ and left bicep: absent
I was told at my last appointment (by my lyme doctor) that he doesn't usually see patients w/ANY # of o-banding and so I had to consider that I may have 2 diseases going on. I would love to have a neuro follow me, but I would probably have to lie about getting treated for lyme disease. It's all pretty ridiculous and sickening all at the same time!
Number of doctors
- 10 Total , 4 neuros (1 MS Specialist), 1 opthalmologist (MS spec. wife), 1 Rheumie, my GP, 1 urgent care, talked to an Infectious Disease Dr., and my Lyme Dr.
Tip - off to your alternate diagnosis-
joint pain and hubby started having similar numbness/spasticity
What kind of doctor and what tests made the diagnosis
Unfortunately, I had to request the Western Blot for lyme myself. When it came back CDC positive, all the doctors that I spoke with either ignored it altogether or told me that lyme disease didn't exist in my state. The Infectious Disease doctor (who had treated lyme back east) told me that it would be considered too controversial to treat someone for neuro-lyme in OK (because it doesn't exist). I had to go out of state to actually get a "diagnosis" for lyme by a doctor that specializes in tick borne illness. (we had built a house out on acreage in 2003 and had both been exposed to numerous tick bites year after year)
MRI- numerous white matter lesions (@13) most and largest on the right side, hence the mostly left sided neuro symptoms---C-spine MRI- showed no lesions
LP- 1 O-band in CSF, none in serum
Reflexes- last exam (5/08) showed left knee:4+ left ankle:3+ and left bicep: absent
I was told at my last appointment (by my lyme doctor) that he doesn't usually see patients w/ANY # of o-banding and so I had to consider that I may have 2 diseases going on. I would love to have a neuro follow me, but I would probably have to lie about getting treated for lyme disease. It's all pretty ridiculous and sickening all at the same time!
And almost forgot! The lovely diabetic neuropathy, which sometimes causes me to walk like I'm on broken glass. Only a few steps at a time, and can't make one trip around a mall. Can't forget that one. Visual Aid.me sitting on the curb at Macy's, because I couldn't walk any farther to my car. I got some funny looks, but not one person asked if they could help! Maybe I should have held out a paper cup, suppose?
M
M
Gee, where do I start.probably in 1993. Fatigue, muscle spasms, painful joints, headaches, weakness in right leg.etc. Lots of drs. PCP's-4- rheumatologist-1- Neuro-1- who ruled out MS, after MRI's only found 1 4mm lesion. 1-Opthomalogist. Ended up with degenerative disc disease, degerative osteo-arthritis, type 2 diabetes, fibromyalgia, allergies. No sudden "Oh, that's it!" moment. All in all, it su**s to be me!
Maggie
Maggie
OK, I posted on the Limboland thread, but this is really more appropriate. At least for now.
Transverse Myelitis
Date of onset of symptoms - October, 2007
Number of doctors - 2
Tip - off to your alternate diagnosis Negative LP, Negative VEP, Negative SSER, teensy or no brain lesions (depending on which MRI you're looking at), spinal lesions, bowel and bladder troubles
What kind of doctor and what tests made the diagnosis - Both doctors neurologists, current one is an MS specialist. MRI with spinal lesions, sudden onset of symptoms, no clear-cut multiple attacks.
Transverse Myelitis
Date of onset of symptoms - October, 2007
Number of doctors - 2
Tip - off to your alternate diagnosis Negative LP, Negative VEP, Negative SSER, teensy or no brain lesions (depending on which MRI you're looking at), spinal lesions, bowel and bladder troubles
What kind of doctor and what tests made the diagnosis - Both doctors neurologists, current one is an MS specialist. MRI with spinal lesions, sudden onset of symptoms, no clear-cut multiple attacks.
Good thread!
I was first diagnosed with mixed connective tissue disease. Then a very well published doctor diagnosed Primary Sjogren's and was very upset that I and others don't understand that Sjogren's is not just dry eyes and mouth. Finally 06/07 diagnosed with MS after TM that didn't go away.
Erin :)
I was first diagnosed with mixed connective tissue disease. Then a very well published doctor diagnosed Primary Sjogren's and was very upset that I and others don't understand that Sjogren's is not just dry eyes and mouth. Finally 06/07 diagnosed with MS after TM that didn't go away.
Erin :)
Onset of Symptoms: 1999
Number of doctors: 3 PCP’s, 1 Neurologist, 1 ENT, 2 Infectious Disease (one local and one at the Cleveland Clinic), 1 Rheumatologist, 1 Rheumatologist/Immunologist (at the Cleveland Clinic…who finally figured it out)…and a partridge in a pear tree.
Tip-Off: Once MS was ruled out by the Neuro in 2007 (through MRI’s), the tip-off that something WAS wrong was simply that my immune system continued to be overactive. He referred me to a rheumatologist. I started testing positive for cryoglobulin (an abnormal protein) and also the tests were showing CMV and EBV titers from an old infection, but then changed to a current infection which did not make sense and I was told this was not supposed to happen. Until the CMV and cryoglobulin problems were solved, I could not be treated. I was referred to the Cleveland Clinic.
Eventually a DNA test determined that the CMV was not an active virus in my system…not really there???…and it has been labeled as my “red herring” as it does still test as current…both IgM and IgG titers. There were a few other blood tests that were “wacko” as well, and are still unanswered.
Diagnosis: The Rheumatologist/Immunologist at the Cleveland Clinic diagnosed “Undifferentiated Connective Tissue Disease” (UCTD)...preferring that over “Mixed” as he stated it would allow him to use a larger variety of treatments if I would need to try different drugs. The three main overlapping connective tissue diseases he has focused on are Sjogren’s, Lupus, and Polymyositis.
Tests: Lip biopsy for Sjogren’s and the usual ANA break down for connective tissue. There was a lot of testing to rule out other causes for many symptoms I was having (focusing on cancer for awhile….which I NEVER thought I had), but once the lip biopsy was done (July 2008) I started taking Prednisone and Plaquenil.
Looking back to 1999, when I first went to my PCP due to overwhelming fatigue, had I known then what I know now, I would have switched doctors or raised a little HECK. The doctor at the CC looked over my tests from 2000 and could see it this all started then.
Treatment is working very well for me and I continue to improve. I have my life back. Had I not joined this forum 1 1/2 years ago, I might not have learned enough to know that a mimic might be the answer.
Sorry this is kinda long.
Wanna :o)
Number of doctors: 3 PCP’s, 1 Neurologist, 1 ENT, 2 Infectious Disease (one local and one at the Cleveland Clinic), 1 Rheumatologist, 1 Rheumatologist/Immunologist (at the Cleveland Clinic…who finally figured it out)…and a partridge in a pear tree.
Tip-Off: Once MS was ruled out by the Neuro in 2007 (through MRI’s), the tip-off that something WAS wrong was simply that my immune system continued to be overactive. He referred me to a rheumatologist. I started testing positive for cryoglobulin (an abnormal protein) and also the tests were showing CMV and EBV titers from an old infection, but then changed to a current infection which did not make sense and I was told this was not supposed to happen. Until the CMV and cryoglobulin problems were solved, I could not be treated. I was referred to the Cleveland Clinic.
Eventually a DNA test determined that the CMV was not an active virus in my system…not really there???…and it has been labeled as my “red herring” as it does still test as current…both IgM and IgG titers. There were a few other blood tests that were “wacko” as well, and are still unanswered.
Diagnosis: The Rheumatologist/Immunologist at the Cleveland Clinic diagnosed “Undifferentiated Connective Tissue Disease” (UCTD)...preferring that over “Mixed” as he stated it would allow him to use a larger variety of treatments if I would need to try different drugs. The three main overlapping connective tissue diseases he has focused on are Sjogren’s, Lupus, and Polymyositis.
Tests: Lip biopsy for Sjogren’s and the usual ANA break down for connective tissue. There was a lot of testing to rule out other causes for many symptoms I was having (focusing on cancer for awhile….which I NEVER thought I had), but once the lip biopsy was done (July 2008) I started taking Prednisone and Plaquenil.
Looking back to 1999, when I first went to my PCP due to overwhelming fatigue, had I known then what I know now, I would have switched doctors or raised a little HECK. The doctor at the CC looked over my tests from 2000 and could see it this all started then.
Treatment is working very well for me and I continue to improve. I have my life back. Had I not joined this forum 1 1/2 years ago, I might not have learned enough to know that a mimic might be the answer.
Sorry this is kinda long.
Wanna :o)
yeah, Bio, you currently have several "junk" diagnoses. I would put you in as a Limbolander.
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