Aa
Limbo is hell
I never really knew what hell was until my disease process started. I think the worst part hasn't been the pain, it's been the lack of answers from the medical authorities on what is wrong with me. The Mayo clinic has turned me down for an appointment, as they don't feel there is any more they can do for me that hasn't already been done... and I'm like... NO ONE HAS DONE ANYTHING! It's a nightmare, and my wife and I are so damn frustrated by the whole thing. The worthless neurologist I saw locally had me stand up, put my arms out and then touch my nose. That was it. He said, "you have a head tremor." I was like, no duh, numbnuts, why can't I walk without a cane? He had no answers for that or for any of the other troubling issues that have plagued me since this all began. He dared to suggest I was a drug seeker, and then put me on gabapentin and tramadol. I was livid with his "care" of my case, so I demanded the referral that I speak of at the end of this post. My wife suggested I post up my information to some neurology boards to see if any of it sounds familiar to someone else. Now that you have an idea about what I'm dealing with... here's how I got there...
For many years, at least 15, I had a weird issue crop up every day. I'd develop a mild fever every afternoon, almost like clockwork. It would start up about 1:00 in the afternoon, and slowly climb until about 5:00. By 7:00 it would break. For the most part, it never got above 99.5. Just enough to make me feel ick, but not enough to really consider it much more than a nuisance. My doc wasn't too worried about it, so we never did anything to track the cause. In 2007, I was diagnosed with juvenile diabetes at the age of 34. A year later, I was diagnosed with a second immune system disease called hashimoto's thyroiditis. I was told I had a hyperactive immune system, and it was attacking some of my organs.
About 2 years ago, something changed. The temperature unexplicably started climbing. First, it went up to 100 degrees, then 100.5, then 101 over a period of 4 months. By the time it got to 100.5, my doctor decided it was time to do something. She sent me to see an infectious disease specialist. He did a ton of blood tests, and I was shocked to find out I had antibodies for diseases I never knew I had been exposed to, including Rocky Mounted Spotted Tick Fever and the Epstein-Barr virus (the virus that is most responsible for the development of MS which is of great concern to me now).
He ended up sending me for nasal surgery, which went well, but lead up to the most hellish experience of my life. I developed excrutiating pain in the back of my head at the point it meets the neck. A month after the pain started, 2 ER visits and 2 MRI's later, they could finally see that I had developed an infection of the bones of the skull and first vertebra called osteomyelitis. My surgeon said that it was very serious, and if it wasn't treated immediately, could spread to the spine and brain very quickly. He let me go home so I could pick up my wife and drop my car off, and my wife drove me straight back for admission to the hospital. I was only in for 8 days, but I was off of work until Feb 1st, and even then I could only work half days because of the hyperbaric treatment schedule.
In the months that followed, the pain reduced significantly, but never completely went away. I was still on oxycodone for the pain. In August of last year, I was referred to a neurosurgeon to see if they could find out why the pain was still present. He did a CT and 6 standing x-rays. A month later, he told me he couldn't find anything and sent me to a physical care specialist. That doctor sent me to physical therapy. When I started PT in Sept of last year, I was taking 2 oxycodone a day to help get to sleep. I wasn't really experiencing "pain" per se, and that was probably why I wasn't really taken very seriously. I didn't describe it as pain, but as moderate to severe discomfort. By the time I stopped going to PT, it had gone from being occasional discomfort that I could tolerate most of the day, to being a moderate pain that never reduced or went away. As a result, I am now on up to 4 oxycodone a day, and take morphine 3 times a day.
Something else started during PT... the head tremor. It started out as a mild head tremor, focused where the damage in the neck was, to a head tremor and tremors and spasms of the arms and shoulders. I now have occasional (which means most of the time anymore) problems walking and with my speech. I never stuttered before in my life until now. Just to be totally open, I had prior to this experienced a head tremor once during a low blood sugar episode. It was short lived, and I never thought about it again until I developed the constant head tremor. If I'm going to be on my feet for more than just a short walk (less than 50 feet), I require a cane.
Some other issues I've had for years include: weird cramping, especially in the intercostal muscles (in the ribs), abdomen and sometimes the thighs. These aren't just regular cramps, they are super hard cramps that hurt worse than any cramps I'd ever had before, and the pain lingers for days from the damage they cause. I also have tingling in the fingers on both hands, and weird sensations in my shoulders, upper arms and thighs. I also suffer from fatigue, sleep apnea, insomnia, hearing difficulties (I actually have really good hearing according to hearing tests, I was told my brain has issues recognizing the input I receive from my ears, especially in noisy situations). I also have high blood pressure, high cholestorol and water retention.
That's it, that's the summary of my medical ills to date. Because of my issues with walking/stability, I have been forced to medically retire from my career as a law enforcement officer. I was a cop for 11 years. I have little hope of being able to ever return to active duty again. At this point, I have little hope of being able to work outside of the home. I can't drive while medicated, so my options are very limited. If a doctor were to tell me tomorrow that I have cancer, at least I'd have something tangible to call this. It's a nightmare not knowing. Disability denied my claim because they don't have sufficient information or diagnosis to be able to make a conclusion (it's being appealled). I've seen 2 neurosurgeons and a neurologist, and so far I've had more blank expressions than answers. The first neurosurgeon told me he couldn't find anything wrong, and the second told me he's never seen this before. I think the worst part was the neurologist suggesting I was a drug seeker. I blew up on him, and told him "If you damn doctors would do your jobs, I wouldn't need to be on medications." I never asked to be put on narcotic pain meds, my doctors made those choices for me. If I could come off of them today, I'd love to. I fear becoming hooked on them.
I have one last hope left now that Mayo has refused to see me. I have the appointment I got after I demanded a referral from the worthless neurologist here in town. I have an appointment in July at the movement disorders clinic at Barnes Jewish Hospital in St Louis. We are praying they can give us some answers, instead of just blindly throwing more medications at me.
For many years, at least 15, I had a weird issue crop up every day. I'd develop a mild fever every afternoon, almost like clockwork. It would start up about 1:00 in the afternoon, and slowly climb until about 5:00. By 7:00 it would break. For the most part, it never got above 99.5. Just enough to make me feel ick, but not enough to really consider it much more than a nuisance. My doc wasn't too worried about it, so we never did anything to track the cause. In 2007, I was diagnosed with juvenile diabetes at the age of 34. A year later, I was diagnosed with a second immune system disease called hashimoto's thyroiditis. I was told I had a hyperactive immune system, and it was attacking some of my organs.
About 2 years ago, something changed. The temperature unexplicably started climbing. First, it went up to 100 degrees, then 100.5, then 101 over a period of 4 months. By the time it got to 100.5, my doctor decided it was time to do something. She sent me to see an infectious disease specialist. He did a ton of blood tests, and I was shocked to find out I had antibodies for diseases I never knew I had been exposed to, including Rocky Mounted Spotted Tick Fever and the Epstein-Barr virus (the virus that is most responsible for the development of MS which is of great concern to me now).
He ended up sending me for nasal surgery, which went well, but lead up to the most hellish experience of my life. I developed excrutiating pain in the back of my head at the point it meets the neck. A month after the pain started, 2 ER visits and 2 MRI's later, they could finally see that I had developed an infection of the bones of the skull and first vertebra called osteomyelitis. My surgeon said that it was very serious, and if it wasn't treated immediately, could spread to the spine and brain very quickly. He let me go home so I could pick up my wife and drop my car off, and my wife drove me straight back for admission to the hospital. I was only in for 8 days, but I was off of work until Feb 1st, and even then I could only work half days because of the hyperbaric treatment schedule.
In the months that followed, the pain reduced significantly, but never completely went away. I was still on oxycodone for the pain. In August of last year, I was referred to a neurosurgeon to see if they could find out why the pain was still present. He did a CT and 6 standing x-rays. A month later, he told me he couldn't find anything and sent me to a physical care specialist. That doctor sent me to physical therapy. When I started PT in Sept of last year, I was taking 2 oxycodone a day to help get to sleep. I wasn't really experiencing "pain" per se, and that was probably why I wasn't really taken very seriously. I didn't describe it as pain, but as moderate to severe discomfort. By the time I stopped going to PT, it had gone from being occasional discomfort that I could tolerate most of the day, to being a moderate pain that never reduced or went away. As a result, I am now on up to 4 oxycodone a day, and take morphine 3 times a day.
Something else started during PT... the head tremor. It started out as a mild head tremor, focused where the damage in the neck was, to a head tremor and tremors and spasms of the arms and shoulders. I now have occasional (which means most of the time anymore) problems walking and with my speech. I never stuttered before in my life until now. Just to be totally open, I had prior to this experienced a head tremor once during a low blood sugar episode. It was short lived, and I never thought about it again until I developed the constant head tremor. If I'm going to be on my feet for more than just a short walk (less than 50 feet), I require a cane.
Some other issues I've had for years include: weird cramping, especially in the intercostal muscles (in the ribs), abdomen and sometimes the thighs. These aren't just regular cramps, they are super hard cramps that hurt worse than any cramps I'd ever had before, and the pain lingers for days from the damage they cause. I also have tingling in the fingers on both hands, and weird sensations in my shoulders, upper arms and thighs. I also suffer from fatigue, sleep apnea, insomnia, hearing difficulties (I actually have really good hearing according to hearing tests, I was told my brain has issues recognizing the input I receive from my ears, especially in noisy situations). I also have high blood pressure, high cholestorol and water retention.
That's it, that's the summary of my medical ills to date. Because of my issues with walking/stability, I have been forced to medically retire from my career as a law enforcement officer. I was a cop for 11 years. I have little hope of being able to ever return to active duty again. At this point, I have little hope of being able to work outside of the home. I can't drive while medicated, so my options are very limited. If a doctor were to tell me tomorrow that I have cancer, at least I'd have something tangible to call this. It's a nightmare not knowing. Disability denied my claim because they don't have sufficient information or diagnosis to be able to make a conclusion (it's being appealled). I've seen 2 neurosurgeons and a neurologist, and so far I've had more blank expressions than answers. The first neurosurgeon told me he couldn't find anything wrong, and the second told me he's never seen this before. I think the worst part was the neurologist suggesting I was a drug seeker. I blew up on him, and told him "If you damn doctors would do your jobs, I wouldn't need to be on medications." I never asked to be put on narcotic pain meds, my doctors made those choices for me. If I could come off of them today, I'd love to. I fear becoming hooked on them.
I have one last hope left now that Mayo has refused to see me. I have the appointment I got after I demanded a referral from the worthless neurologist here in town. I have an appointment in July at the movement disorders clinic at Barnes Jewish Hospital in St Louis. We are praying they can give us some answers, instead of just blindly throwing more medications at me.
I'm sorry to hear about all you have been through. That does sound so frustrating! I've only been dealing with this for a little over a year and doctors for about 6 months and I'm already frustrated. It sounds like you've been dealing with the frustration for quite some time!
I hope that your appointment in July will provide you with some answers!
I hope that your appointment in July will provide you with some answers!
Niko:
Not sure what you are asking for, but I'll try my best...
I was first diagnosed with Type I Diabetes in 2007 at the age of 34 (I am the only T1 in my family, my dad and both grandfathers had T2). After going through regular blood work every 3 months, they found my thyroid functioning was dropping, so they ran further tests and a year after I was diagnosed with T1DM was diagnosed with Hashimoto's Thyroiditis (which actually runs in the family, my dad and 2 of my 5 siblings have it). My treatment for T1DM is Novolog via insulin pump. I take levothyroxine for the thyroiditis.
After the fever started going up, I went to see the infectious disease specialist. He drew up what felt like a gallon of blood for testing. A few weeks later, during the next office visit, he asked me if I knew I had been exposed to rocky mountain spotted tick fever, which I didn't, and if I had ever had mono. I have never had mono, but I did test positive for Epstein-Barr antibodies.
Until I turned 34, I was very healthy, with the exception that I smoked. When I was originially dx'd with diabetes, they dx'd me with T2 diabetes, which seemed really odd, because I only weighed 180 pounds, and was really, really healthy... or so I thought. I had made so many lifestyle changes leading up to that year. I had been regularly exercising, eating healthy, etc. I felt fit as a fiddle, and was able to do things I'd never done before. There was only one little issue that I couldn't escape... erectile dysfunction. I promised my wife I would talk to my doctor about it. She did a blood test to check my testosterone. My testosterone was fine, but my blood sugar was in the 800's. I was in Kansas for training when I got the call that they needed to see me ASAP for further testing.
Anyway, long story short, I was only misdiagnosed for about a month, because I asked if they had done an antibody test, which they hadn't, so I had one done, and boom... my endo told me the results were literally off their charts high. I was a T1, not a T2. I started on insulin therapy immediately.
Other than the surgery for the deviated septum that led up to my osteomyelitis, I've only had one other surgery, and that was a cardiac cath about a year and a half before. No other injuries. I'd only had 2 stitches in my life, and they were for the cath procedure.
I have been involved in emergency services as an EMT/Firefighter/Police Officer for over 25 years. I have been exposed to more stressful events during that time than I could ever count, and have been exposed to blood/body fluids as well (it's a job hazard). I've been tested every other year for HIV/AIDS/Hepatitis because of the exposures I've encountered, and have always tested negative.
I'm currently in the process of getting my records for my pension program, as I have filed a medial retirement claim with them, but other than that, I probably could get a complete record of everything. I have no doubt that my issues have got to connect somewhere, but the "specialists" so far have all only been focusing on the ones that are in their area of expertise, instead of trying to connect the problems with something bigger. I don't know if it is even possible to get unredacted medical records privately.
Anyway, I hope these answer your questions, if not, please let me know. I'll answer them as best as I can.
Not sure what you are asking for, but I'll try my best...
I was first diagnosed with Type I Diabetes in 2007 at the age of 34 (I am the only T1 in my family, my dad and both grandfathers had T2). After going through regular blood work every 3 months, they found my thyroid functioning was dropping, so they ran further tests and a year after I was diagnosed with T1DM was diagnosed with Hashimoto's Thyroiditis (which actually runs in the family, my dad and 2 of my 5 siblings have it). My treatment for T1DM is Novolog via insulin pump. I take levothyroxine for the thyroiditis.
After the fever started going up, I went to see the infectious disease specialist. He drew up what felt like a gallon of blood for testing. A few weeks later, during the next office visit, he asked me if I knew I had been exposed to rocky mountain spotted tick fever, which I didn't, and if I had ever had mono. I have never had mono, but I did test positive for Epstein-Barr antibodies.
Until I turned 34, I was very healthy, with the exception that I smoked. When I was originially dx'd with diabetes, they dx'd me with T2 diabetes, which seemed really odd, because I only weighed 180 pounds, and was really, really healthy... or so I thought. I had made so many lifestyle changes leading up to that year. I had been regularly exercising, eating healthy, etc. I felt fit as a fiddle, and was able to do things I'd never done before. There was only one little issue that I couldn't escape... erectile dysfunction. I promised my wife I would talk to my doctor about it. She did a blood test to check my testosterone. My testosterone was fine, but my blood sugar was in the 800's. I was in Kansas for training when I got the call that they needed to see me ASAP for further testing.
Anyway, long story short, I was only misdiagnosed for about a month, because I asked if they had done an antibody test, which they hadn't, so I had one done, and boom... my endo told me the results were literally off their charts high. I was a T1, not a T2. I started on insulin therapy immediately.
Other than the surgery for the deviated septum that led up to my osteomyelitis, I've only had one other surgery, and that was a cardiac cath about a year and a half before. No other injuries. I'd only had 2 stitches in my life, and they were for the cath procedure.
I have been involved in emergency services as an EMT/Firefighter/Police Officer for over 25 years. I have been exposed to more stressful events during that time than I could ever count, and have been exposed to blood/body fluids as well (it's a job hazard). I've been tested every other year for HIV/AIDS/Hepatitis because of the exposures I've encountered, and have always tested negative.
I'm currently in the process of getting my records for my pension program, as I have filed a medial retirement claim with them, but other than that, I probably could get a complete record of everything. I have no doubt that my issues have got to connect somewhere, but the "specialists" so far have all only been focusing on the ones that are in their area of expertise, instead of trying to connect the problems with something bigger. I don't know if it is even possible to get unredacted medical records privately.
Anyway, I hope these answer your questions, if not, please let me know. I'll answer them as best as I can.
You sound so familiar to me. When I first felt the spastic twitches in my muscles, it was in my legs. It was about a year ago (before physical therapy actually), I told my wife something felt weird. It was like my muscles were jerking instead of moving the way they should. And that's still what it feels like. It's like my legs are snapping forward into their position, but it's not just a straight forward snap. They jerk on their own until they are planted. I also have sometimes severe twitching in the shoulders and upper arms.
I have a brother-in-law with MS I should reach out and talk to. I don't think I have MS, but I am curious what his symptoms are like.
D
I have a brother-in-law with MS I should reach out and talk to. I don't think I have MS, but I am curious what his symptoms are like.
D
Hi DCaplinger!
Welcome to the forum.
Sarahw244, send me a note.
I've been away, so my medhelp involvement lately has been limited.
There are some medical "holes"regarding your condition..
I have some questions for you regarding DXs and treatments undertaken and other details.
Hashimotos dx and treatment.
Rocky Mounted Spotted Tick Fever antibodies- lab test results
EBV - same
Diabetes - lifestyle changes/diet and treatment protocol.
Any other tests, DXs, accidents, injuries etc.
Details regarding any traumatic and/or very stressful events prior to the onset of your more serious symptoms.
Anything else you may want to add.
Do you still have any connections to help you get a copy of your medical records and doctor notes (without any omissions or tampering)?
You might find some surprises!
Hang in there. Some dots need connecting.
One of the main issues with conventional medicine is lack of communication and professional bias.
Let me know and I'll get back to you.
Cheers,
Niko
Welcome to the forum.
Sarahw244, send me a note.
I've been away, so my medhelp involvement lately has been limited.
There are some medical "holes"regarding your condition..
I have some questions for you regarding DXs and treatments undertaken and other details.
Hashimotos dx and treatment.
Rocky Mounted Spotted Tick Fever antibodies- lab test results
EBV - same
Diabetes - lifestyle changes/diet and treatment protocol.
Any other tests, DXs, accidents, injuries etc.
Details regarding any traumatic and/or very stressful events prior to the onset of your more serious symptoms.
Anything else you may want to add.
Do you still have any connections to help you get a copy of your medical records and doctor notes (without any omissions or tampering)?
You might find some surprises!
Hang in there. Some dots need connecting.
One of the main issues with conventional medicine is lack of communication and professional bias.
Let me know and I'll get back to you.
Cheers,
Niko
When i read your post i just sighed. How can you not be diagnosed with all that has gone on, and all the positive blood tests.
Have you ever been tested for Lymes by the way?
As to temperatures this is a Lupus thing and Lupus would fit some of your symptoms.
I have been in limbo 6 years this year, even with positive stuff for MS. I have given up to be honest and just look after myself as I know even with MS there is nothing I can have now which would make the slightest difference, but i dont think you have MS, it sounds more infectious/auto immune and my dad had some of your problems with Lupus. He used to get this temperature thing in the afternoon, and eventually the pain in his legs.
I think for now all you can do is wait for this appointment, but in the meantime look at holistic ways to treat yourself, that is what i am doing. I have for example gone gluten and wheat free, and it really has helped the burning in my legs, and also the fatigue. I am not saying it helps for everyone but gluten certainly affects the neurological system.
Once you start taking these heavy painkillers like morphine, you body seems to go into withdrawal as soon as you wait a few hours. IF you can I know it will be hard I would try and come off them. I agree with sarah if you can find a pain specialist perhaps they can give you something which is less hard on your system.
I too believe I have two things going on. Even my neuro thinks that.
I dont know how I stay sane, somedays I dont and feel like giving up, but I really want to know why i am ill. I am going to a specialsit clinic in the UK for Lymes and other autoimmune problems even fibromyalgia and M.E. just to see if they can find something going on.
The pain gets to me somedays, but i wont take pain meds I have a high threshold for pain but somedays I feel like screaming. How can we have so much pain but have no diagnosis it is just mad.
I really feel for you but try to keep positive. It sounds to me as though you have been through enough already without adding to it all. xxxx
Have you ever been tested for Lymes by the way?
As to temperatures this is a Lupus thing and Lupus would fit some of your symptoms.
I have been in limbo 6 years this year, even with positive stuff for MS. I have given up to be honest and just look after myself as I know even with MS there is nothing I can have now which would make the slightest difference, but i dont think you have MS, it sounds more infectious/auto immune and my dad had some of your problems with Lupus. He used to get this temperature thing in the afternoon, and eventually the pain in his legs.
I think for now all you can do is wait for this appointment, but in the meantime look at holistic ways to treat yourself, that is what i am doing. I have for example gone gluten and wheat free, and it really has helped the burning in my legs, and also the fatigue. I am not saying it helps for everyone but gluten certainly affects the neurological system.
Once you start taking these heavy painkillers like morphine, you body seems to go into withdrawal as soon as you wait a few hours. IF you can I know it will be hard I would try and come off them. I agree with sarah if you can find a pain specialist perhaps they can give you something which is less hard on your system.
I too believe I have two things going on. Even my neuro thinks that.
I dont know how I stay sane, somedays I dont and feel like giving up, but I really want to know why i am ill. I am going to a specialsit clinic in the UK for Lymes and other autoimmune problems even fibromyalgia and M.E. just to see if they can find something going on.
The pain gets to me somedays, but i wont take pain meds I have a high threshold for pain but somedays I feel like screaming. How can we have so much pain but have no diagnosis it is just mad.
I really feel for you but try to keep positive. It sounds to me as though you have been through enough already without adding to it all. xxxx
terrible, the worse pain I had recently was my tendons started to hurt and that pain was off the show. Like you I just want answers so I can get the right drugs for treatment.
I worked for News Limited in an executive position and now..... I am so fatigued and in pain I cannot work. I am 52 years of age and feel like I am 82 and near the end of my life. No one knows the answers to my problem.
Please keep in touch as it helps to chat with others who are also not dx as we understand each others fustration
I worked for News Limited in an executive position and now..... I am so fatigued and in pain I cannot work. I am 52 years of age and feel like I am 82 and near the end of my life. No one knows the answers to my problem.
Please keep in touch as it helps to chat with others who are also not dx as we understand each others fustration
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