Aa
Update, "crying uncle"...
Hello! Well, I've had all the test now (besides Lumbar puncture)... still dealing with blurry left eye: eye exam =no signs of ON. Weakness, numbness, achiness, fatigue in left leg/foot: nerve conduction test = normal. All MRI's done 6 months ago= normal. No one can explain why I stood up and fell, and sense than, have a multitude of symptoms that pointed to MS, which my Neuro has said I do not have.
Only "proof" of my symptoms are the hyper flexia of the left leg and the 25% vestibular deficit on the left side which is the reason for my unsteady gait/balance problems. Where do I go from here? I have an appt early December at the Mayo...but feeling hopeless that they are going to figure out what is wrong with me considering all the tests I've had done so far and I still have no answers. Feel emotionally, physically and mentally exhausted and no better off (as far as hope for relief) than I was when this all started!
Only "proof" of my symptoms are the hyper flexia of the left leg and the 25% vestibular deficit on the left side which is the reason for my unsteady gait/balance problems. Where do I go from here? I have an appt early December at the Mayo...but feeling hopeless that they are going to figure out what is wrong with me considering all the tests I've had done so far and I still have no answers. Feel emotionally, physically and mentally exhausted and no better off (as far as hope for relief) than I was when this all started!
Than you for your response and time in putting some detective sleuthing to my problem ;-) I appreciate it!
1) The MRI's were done on a 1.5 and per MS protocol but I wonder/hope that the Mayo will humor me and reorder scans on a 3T or stronger...at this point, I've almost hit my deductible, why stop now?!
2) My Internal Med doctor and Neuro felt that the Epstain Barr results reflected an old virus and not an active one...my iron levels are now in a good range because of some supplements I'm taking and I've been "choking" down some chicken (bluck!) in the event that my diet is contributing to my symptoms...I said to my husband..."if it's me or the chicken, the chicken loses!" ;-)
3) I feel like there's been so many wrong turns, I don't know what to believe! I went from being diagnosed with vertigo, to cervicogenic dizziness, to a definitive diagnosis of 25% vestibular deficit based on higher end testing. Hearing test is normal and no one can say what brought this on...it is "damage' now and I'm going to PT to retrain the other parts of my body to pick up the slack. So far, not much improvement but will continue the course. Dizzy and I'm not even blonde (blonde joke here ;-)
4) my left leg (symptomatic one) is the one that I actually could put a little weight on prior to the fall, i actually collapsed after shifting the weight to the right, where there was nothing/no feeling, and sprained that ankle. I only saw the Chiro 3x's and then when that wasn't helping me with the dizziness, I stopped going...but I think I have to revisit her and give her the few dollars I have left at this point to see if my spine being out of alignment is one facet of what I've got going on. I've had periods of saying the wrong words, unfocused concentration, brain "fog", perhaps that can all be attributed to "old age" (not really THAT old) and the stress of this.
the wacky doodleness of this all is the first neuro (a MS specialist) diagnosed me MS without seeing MRI's and that is what has started me on this tailspin. Perhaps (fingers crossed) that there are separate things going on that are stand alone problems but when put under the suggestion of MS, fits the bill, when in fact...it is not.
The body is a complex thing, and when it's not "working", it can really suck!! Good suggestion to take what I know and work at solving that, maybe the rest will just resolve on it's own!
1) The MRI's were done on a 1.5 and per MS protocol but I wonder/hope that the Mayo will humor me and reorder scans on a 3T or stronger...at this point, I've almost hit my deductible, why stop now?!
2) My Internal Med doctor and Neuro felt that the Epstain Barr results reflected an old virus and not an active one...my iron levels are now in a good range because of some supplements I'm taking and I've been "choking" down some chicken (bluck!) in the event that my diet is contributing to my symptoms...I said to my husband..."if it's me or the chicken, the chicken loses!" ;-)
3) I feel like there's been so many wrong turns, I don't know what to believe! I went from being diagnosed with vertigo, to cervicogenic dizziness, to a definitive diagnosis of 25% vestibular deficit based on higher end testing. Hearing test is normal and no one can say what brought this on...it is "damage' now and I'm going to PT to retrain the other parts of my body to pick up the slack. So far, not much improvement but will continue the course. Dizzy and I'm not even blonde (blonde joke here ;-)
4) my left leg (symptomatic one) is the one that I actually could put a little weight on prior to the fall, i actually collapsed after shifting the weight to the right, where there was nothing/no feeling, and sprained that ankle. I only saw the Chiro 3x's and then when that wasn't helping me with the dizziness, I stopped going...but I think I have to revisit her and give her the few dollars I have left at this point to see if my spine being out of alignment is one facet of what I've got going on. I've had periods of saying the wrong words, unfocused concentration, brain "fog", perhaps that can all be attributed to "old age" (not really THAT old) and the stress of this.
the wacky doodleness of this all is the first neuro (a MS specialist) diagnosed me MS without seeing MRI's and that is what has started me on this tailspin. Perhaps (fingers crossed) that there are separate things going on that are stand alone problems but when put under the suggestion of MS, fits the bill, when in fact...it is not.
The body is a complex thing, and when it's not "working", it can really suck!! Good suggestion to take what I know and work at solving that, maybe the rest will just resolve on it's own!
Thank you so much for your response and understanding my need for validation for real symptoms! You are SO right, so well put!! This whole experience has been a real eye opener to the Medical industry. In fact, during this ordeal, I've had to have a doctor 'scrub" some inaccurate information from my medical file that I never would have known was there had I not had an Internal Med doctor take the time to really listen to me and take in interest in helping me out. Scary!
It saddens and angers me that your diagnosis took so long, no one knows our bodies better than ourselves! I will continue to keep you in my prayers! You are a true gem!
It saddens and angers me that your diagnosis took so long, no one knows our bodies better than ourselves! I will continue to keep you in my prayers! You are a true gem!
COMMUNITY LEADER
Thoughts......
1) "the MRI's T-1, Brain and Spines, all clear"
** If you are saying that your brain and spine MRI's, have only ever been done on a '1-T' strength, then i would suggest getting them run again on a stronger MRI. It's preferable to have them run with MS protocol and on at least a 1.5T, the 3T MRI is often better at picking up spinal cord lesions but the 1.5T usually picks up brain lesions.
2) "My lgG results were way out of range...0.0-22.9 is the range and mine is greater than 750!! And my IgM is below...range is 0.0-43.9 and mine is less than 10.0."
** These results (from my understanding) would usually indicate an active infection or reinfection for Epstein-Barr virus (EBV) and if so, could explain why your experiencing the coming and going flue like symptoms, fatigue, weakness, sweating sx's
note: You've mentioned being low in IRON (from being a vegetarian?) which would 'also' explain 'some' of your sx's and if you did have an active viral infection, vitamin deficiencies like IRON, B's etc really would not be helping!
3)"25% vestibular deficit on the left side which is the reason for my unsteady gait/balance problems."
** being dx with a Vestibular deficit is a very plausible explanation, the main issue is the dr not knowing the cause, was that due to having normal hearing tests and or not having vertigo dizziness? Vestibular PT can often fix or improve the problem, so it's in your best interest even without knowing the causation, to actually get that pt going or see it through if you've already started the therapy.
4) "hyper flexia of the left leg "
** absent i think can indicate the peripheral nervous system is involved, hyper can indicate the central nervous system, but there are many causes and not necessarily a neurological one. If there is only hyperreflexia and no other spinal cord lesion related clinical signs, it's commonly one of the other causes eg any spinal injury eg degenerative disc, CNS delivered medications eg anti depressants but even conditions like hyperthyroidism are listed. see below for examples you may like to consider...
http://books.google.com.au/books?id=iDCuxfnbBgIC&pg=PA174&lpg=PA174&dq=causes+of+hyperreflexia&source=bl&ots=XfuWyh8OrA&sig=KfUNlWhYGMTuedA1O5JDuloG-os&hl=en&sa=X&ei=72pPVOCCNZD48QWN_oIw&ved=0CGsQ6AEwCw#v=onepage&q=causes%20of%20hyperreflexia&f=false
note: you mentioned neck and back pain since seeing a chiropractor and the chiro explaining it was due to the manipulations (timing?), you also (I think) injured this same leg during your fall, so there's a potential explanation there. It might be worth asking the chiropractor if hyperreflexia and vestibular dysfunctions are possible from the manipulation too. If it could of cause it, it might explain why you don't have any of the other lesion related clinical signs of spinal cord lesions, might be just a coincidence though but might not, lol i'd definitely be finding out.
From what i can work out, you don't actually mention having any specific sx's, clinical signs or MRI evidence that would usually be suggestive of MS, logically that puts MS a lot lower on your list of all the potential causes. Keep in mind that there is the potential that it might not be MS, it's really better for you to stay open minded!
I really think you might be better off, refocusing on the evidence that your test results are suggestive of, for the time being it's okay to focus on improving/resolving your main issues eg vestibule dysfunction therapy, getting your iron and diet on track, chiropractic sessions, improving fitness, strength, flexibility etc. Basically focusing on changing your current situation, and for the moment putting aside trying to find out if it's something more....
Hugs..........JJ
1) "the MRI's T-1, Brain and Spines, all clear"
** If you are saying that your brain and spine MRI's, have only ever been done on a '1-T' strength, then i would suggest getting them run again on a stronger MRI. It's preferable to have them run with MS protocol and on at least a 1.5T, the 3T MRI is often better at picking up spinal cord lesions but the 1.5T usually picks up brain lesions.
2) "My lgG results were way out of range...0.0-22.9 is the range and mine is greater than 750!! And my IgM is below...range is 0.0-43.9 and mine is less than 10.0."
** These results (from my understanding) would usually indicate an active infection or reinfection for Epstein-Barr virus (EBV) and if so, could explain why your experiencing the coming and going flue like symptoms, fatigue, weakness, sweating sx's
note: You've mentioned being low in IRON (from being a vegetarian?) which would 'also' explain 'some' of your sx's and if you did have an active viral infection, vitamin deficiencies like IRON, B's etc really would not be helping!
3)"25% vestibular deficit on the left side which is the reason for my unsteady gait/balance problems."
** being dx with a Vestibular deficit is a very plausible explanation, the main issue is the dr not knowing the cause, was that due to having normal hearing tests and or not having vertigo dizziness? Vestibular PT can often fix or improve the problem, so it's in your best interest even without knowing the causation, to actually get that pt going or see it through if you've already started the therapy.
4) "hyper flexia of the left leg "
** absent i think can indicate the peripheral nervous system is involved, hyper can indicate the central nervous system, but there are many causes and not necessarily a neurological one. If there is only hyperreflexia and no other spinal cord lesion related clinical signs, it's commonly one of the other causes eg any spinal injury eg degenerative disc, CNS delivered medications eg anti depressants but even conditions like hyperthyroidism are listed. see below for examples you may like to consider...
http://books.google.com.au/books?id=iDCuxfnbBgIC&pg=PA174&lpg=PA174&dq=causes+of+hyperreflexia&source=bl&ots=XfuWyh8OrA&sig=KfUNlWhYGMTuedA1O5JDuloG-os&hl=en&sa=X&ei=72pPVOCCNZD48QWN_oIw&ved=0CGsQ6AEwCw#v=onepage&q=causes%20of%20hyperreflexia&f=false
note: you mentioned neck and back pain since seeing a chiropractor and the chiro explaining it was due to the manipulations (timing?), you also (I think) injured this same leg during your fall, so there's a potential explanation there. It might be worth asking the chiropractor if hyperreflexia and vestibular dysfunctions are possible from the manipulation too. If it could of cause it, it might explain why you don't have any of the other lesion related clinical signs of spinal cord lesions, might be just a coincidence though but might not, lol i'd definitely be finding out.
From what i can work out, you don't actually mention having any specific sx's, clinical signs or MRI evidence that would usually be suggestive of MS, logically that puts MS a lot lower on your list of all the potential causes. Keep in mind that there is the potential that it might not be MS, it's really better for you to stay open minded!
I really think you might be better off, refocusing on the evidence that your test results are suggestive of, for the time being it's okay to focus on improving/resolving your main issues eg vestibule dysfunction therapy, getting your iron and diet on track, chiropractic sessions, improving fitness, strength, flexibility etc. Basically focusing on changing your current situation, and for the moment putting aside trying to find out if it's something more....
Hugs..........JJ
I feel your pain. All any of us want validation to have someone say what is happening to you is real. There are over 800 Neurological conditions and over 30 non neurological mimics of MS. The McDonald Criteria makes it harder to get a diagnosis. It took me over 40 years! to be diagnosed with MS and six to be diagnosed with ovarian cancer. I told my doctor in 2006 I had problems with my ovary. What messed them up is they did an ultrasound and I had cysts on both ovaries. According to the literature you don't get ovarian cancer in both ovaries well six years later they found I had cancer in both ovaries. My GP used to think I was a hypochondriac now she sees me immediately. Everyone in her office would roll their eyes at me now they give me massive pity looks.
I worked in veterinary medicine for over twenty years.Vets have to know a lot about lots of diseases in several species. They are small businesses so they normally try not to keep you waiting. Because no insurance they do not have to charge each person differently do to their insurance plan. They also do not to get an okay to do tests or surgery.They soothe there patients and the owners. You can actually talk to the vet on the phone. You talk to real people not phone trees. It may take a few minutes. Vets listen to owners about the pet's symptoms. If your pet needs surgery you get it in a timely manner same with appointments. Vets have to have higher GPAs then doctors and work with animals to get into vet school.
Human clinics are mostly corporations. You have phone trees. Sometimes none of the answers pertain to your problem. The insurance companies make it hard for neurologists to diagnose MS because it is so expensive to treat. God forbid a doctor would register your fear or talk to you about it. You are lucky if you talk to a nurse in several days. Human doctors are specialized. They are myopic and only see their specialty is nothing more. You have to figure out what is wrong or have a GP who can. Few doctors are wholeistic and most of them charge more or do not take insurance. They would have to spend time with you. Most doctors are alotted ten minutes.
They send you to a neurologist and the problem turns out to need a Rhematologist, or an Endcronilogist (sorry anbout the spelling). A vet is all those things usually or knows enough about all the systems of an animal.
I had a kidney stone the size of an almond. I went to all kinds of doctors for four months. The second day my vet said it is a kidney stone and if you were a dog I would take it out today. I told the doctors. They treated me like I was a dumb ***. Finally I had had so many kidney infections from this stone my husband said if my wife dies I will sue. They did emergency surgery that day. They put two different arm bands on. One on each arm and did all the tests twice and could not find the. The doctor forgot to get me to sign consent til after I was anesthetized. They had to find my husband to sign consent.. The doctor was not looking at the xray so he kept going up up the wrong ureter. I came home from surgery and a new GP said I am looking at an old xray do you know you have big kidney stone? Same xray another doctor said there is no kidney stone stop coming back with this complaint.
Until medicine goes back to being a small business like the local vet instead of specialists coming out of the wood work we will see the same problems. It is like we are on a conveyor belt and we hope the right doctor notices something as I went pass by.
Plus there is a possibilty of several things at once. I had the undiagnosed MS and Undiagnosed ovarian cancer, and a bad case of Mono at the same time.
Even now I know about my Cancer than the oncolgists. I had a doctror tell me twice she was putting on a parp inhibitor but it was double blind placebo.
Alex Keep the Faith
MY GP still has a small practice she and my GYN felt terrible about the cancer and apologized to me. That meant so much. They and my breast doctor all talk to me if I need someone to talk to. Sometimes they give me a hug.
I worked in veterinary medicine for over twenty years.Vets have to know a lot about lots of diseases in several species. They are small businesses so they normally try not to keep you waiting. Because no insurance they do not have to charge each person differently do to their insurance plan. They also do not to get an okay to do tests or surgery.They soothe there patients and the owners. You can actually talk to the vet on the phone. You talk to real people not phone trees. It may take a few minutes. Vets listen to owners about the pet's symptoms. If your pet needs surgery you get it in a timely manner same with appointments. Vets have to have higher GPAs then doctors and work with animals to get into vet school.
Human clinics are mostly corporations. You have phone trees. Sometimes none of the answers pertain to your problem. The insurance companies make it hard for neurologists to diagnose MS because it is so expensive to treat. God forbid a doctor would register your fear or talk to you about it. You are lucky if you talk to a nurse in several days. Human doctors are specialized. They are myopic and only see their specialty is nothing more. You have to figure out what is wrong or have a GP who can. Few doctors are wholeistic and most of them charge more or do not take insurance. They would have to spend time with you. Most doctors are alotted ten minutes.
They send you to a neurologist and the problem turns out to need a Rhematologist, or an Endcronilogist (sorry anbout the spelling). A vet is all those things usually or knows enough about all the systems of an animal.
I had a kidney stone the size of an almond. I went to all kinds of doctors for four months. The second day my vet said it is a kidney stone and if you were a dog I would take it out today. I told the doctors. They treated me like I was a dumb ***. Finally I had had so many kidney infections from this stone my husband said if my wife dies I will sue. They did emergency surgery that day. They put two different arm bands on. One on each arm and did all the tests twice and could not find the. The doctor forgot to get me to sign consent til after I was anesthetized. They had to find my husband to sign consent.. The doctor was not looking at the xray so he kept going up up the wrong ureter. I came home from surgery and a new GP said I am looking at an old xray do you know you have big kidney stone? Same xray another doctor said there is no kidney stone stop coming back with this complaint.
Until medicine goes back to being a small business like the local vet instead of specialists coming out of the wood work we will see the same problems. It is like we are on a conveyor belt and we hope the right doctor notices something as I went pass by.
Plus there is a possibilty of several things at once. I had the undiagnosed MS and Undiagnosed ovarian cancer, and a bad case of Mono at the same time.
Even now I know about my Cancer than the oncolgists. I had a doctror tell me twice she was putting on a parp inhibitor but it was double blind placebo.
Alex Keep the Faith
MY GP still has a small practice she and my GYN felt terrible about the cancer and apologized to me. That meant so much. They and my breast doctor all talk to me if I need someone to talk to. Sometimes they give me a hug.
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