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.
http://www.medhelp.org/posts/SURVIVING-NEUROLOGICAL-LIMBO-LAND---NO-DX/NEVER-TRUST-A-NEUROLOGIST/show/1716268
Go to the" Ricobord reply to Nikodicreta"
Also a paragraph from one of my replies on this thread:
"8. Infectious disease specialists are not going to help you much ,
should the underlying infection be anything like Lyme Disease
or Pathogenic Mycoplasma. The protocol dictated by the
Infectious Disease Society of America, does NOT allow for proper
DX and treatment. Most doctors will not risk their careers , breaking protocol by properly helping their patients.
Only LLMDs will help with this. That's why they are few and far between
and most of them work "incognito".
This is a HUGE defect in the system, with tens of thousands of sufferers left in limbo! (I'm no alarmist or conspiracy theorist, this is REAL)
Just go to the Infectious Disease Society of America own website,
and judge for yourself. They're not only a joke, they are a disgrace to
society how they approach such serious diseases!!!
And unfortunately they make the rules with the support of CDC, FDA
and their powerful friends (you know who).
Also you may want to check this book out:
Autoimmune : The Cause and the Cure
This Book Identifies some of The Causes And The Cures For:
Chronic Fatigue Syndrome, Fibromyalgia, Lupus, Sjogren's, Rheumatoid Arthritis, Raynaud's, Rosacea, Myathenia Gravis, Hashimoto's, Type 2 Diabetes, Multiple Sclerosis, and more.
It's an eye opener for most!
Hang in there. The search has just began.
Niko
? I'm not sure what you are trying to tell me there. I was specifically tested for Lyme disease by my PCP. I tested negative. If I'm missing something, please reiterate it.
D
D
I think what Niko is saying is that many times (many times) people are tested for Lyme's disease by doctors and the test comes out negative when you actually do have Lyme's.
Since I have been a member of Medhelp I have read many stories of people who have had symptoms for years, where tested by this or that doctor, and results were negative. Years later, they have full-out neurological Lyme's.
An old member of this forum, in fact, is one. There have been many over on the MS forum too. I bet if you checked out the Lyme's disease forum and asked them over there how many tested negative, there would be a lot.
I think what you need to do is find a LLMD (a lyme-literate doctor). They can help in this area but are few and far between. I think, if I remember correctly, that there aren't many in the US.
Niko and a newer member, Ricobord, are very knowledgable on this. They should/will come along to answer more specifically. Hope this helps!!! And glad your spasms are feeling a little better! I HATE spasms!! One of my more bothersome symptoms.
Sarah
Since I have been a member of Medhelp I have read many stories of people who have had symptoms for years, where tested by this or that doctor, and results were negative. Years later, they have full-out neurological Lyme's.
An old member of this forum, in fact, is one. There have been many over on the MS forum too. I bet if you checked out the Lyme's disease forum and asked them over there how many tested negative, there would be a lot.
I think what you need to do is find a LLMD (a lyme-literate doctor). They can help in this area but are few and far between. I think, if I remember correctly, that there aren't many in the US.
Niko and a newer member, Ricobord, are very knowledgable on this. They should/will come along to answer more specifically. Hope this helps!!! And glad your spasms are feeling a little better! I HATE spasms!! One of my more bothersome symptoms.
Sarah
Sarah did put it in a nice and simple way to understand it.
It is absolutely vital, that sufferers presenting symptoms like yours,
should rule out 100% beyond any reasonable doubt, Lyme Disease.
The reason is, that it presents such a wide symptomology,
that it can mimic just about any serious disease out there.
I don't mean to sound like a broken record, but here's an overview
of the situation, that I prepared last year before the holidays.
Some information to help some members understand what they might be up against, and why must become more focused, knowledgeable, proactive and stronger (as in Mind and Spirit.) and less trusting
that our doctors and the system will take good care of our health matters.
Lyme Disease along with all the other hard to detect Pathogenic Infections, including Pathogenic Mycoplasma Infections and the numerous diseases initiated by those infections (Arthritis, CFS,MS,FMS,Parkinsons,ADD etc.) are probably the most under or Un-Diagnosed diseases in the western world.
IDSA (Infectious Disease Society of America) is THE dominant force in diagnosis and treatment of Infectious disease policy and protocol,
influencing CDC and most Health Authorities and Medical Doctors.
Their view of Lyme and Pathogenic infections is pathetically narrow and controversial.
From their own website: "IDSA sent a letter to the House Energy and Commerce Committee opposing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act". Why??????
For entertainment purposes, go to their website and watch the short video.
It is a tragicomedy. Do they actually believe it themselves?
Their position that Pathogenic Mycoplasma Infections and Lyme disease
are NOT chronic conditions is welcomed by Insurance, Employers (like the U.S Goverment) Pharmaceuticals and other parties who otherwise would stand to lose millions in claims or lost profits.
Many IDSA so-called experts have testified against medical doctors
who have treated such infections outside the IDSA rigid protocols.
Do not be surprised if your Doctor downplays the possibility of Lyme or other Pathogenic Infections ( avoiding being black-listed or harassed) , or if you keep getting negative results from all the various tests, consistently.
( A few Labs were suddenly closed after positive findings of Incognitus Fermentans Mycoplasmas-
IGeneX, the only reliable reference Lab, has survived so far.
I'm planning a meeting in the future with Professor Donald Scott - I live just a couple hours away-as he has in his possession relevant official US and Canadian government documentation regarding extremely controversial events and actions in connection with these Infectious conditions.)
I strongly suspect that the interests of health authorities, CDC, FDA,do not coincide with the interests of the people suffering from these conditions.
( Search for " Public Law 107–116-" when FDA and CDC were ordered to comply with better testing and diagnostic procedures for Lyme . It was a step in the right direction , however, NOT MUCH has changed 10 years later-my opinion only- as these agencies are largely self-regulated)
Should one of their high ranking directors get something like Lyme disease,I wonder how they would approach it. LOL!
Another time I will explore inefficiencies, limitations and faults of Tests and Labs.
Hope this helps shed some light.
Niko
It is absolutely vital, that sufferers presenting symptoms like yours,
should rule out 100% beyond any reasonable doubt, Lyme Disease.
The reason is, that it presents such a wide symptomology,
that it can mimic just about any serious disease out there.
I don't mean to sound like a broken record, but here's an overview
of the situation, that I prepared last year before the holidays.
Some information to help some members understand what they might be up against, and why must become more focused, knowledgeable, proactive and stronger (as in Mind and Spirit.) and less trusting
that our doctors and the system will take good care of our health matters.
Lyme Disease along with all the other hard to detect Pathogenic Infections, including Pathogenic Mycoplasma Infections and the numerous diseases initiated by those infections (Arthritis, CFS,MS,FMS,Parkinsons,ADD etc.) are probably the most under or Un-Diagnosed diseases in the western world.
IDSA (Infectious Disease Society of America) is THE dominant force in diagnosis and treatment of Infectious disease policy and protocol,
influencing CDC and most Health Authorities and Medical Doctors.
Their view of Lyme and Pathogenic infections is pathetically narrow and controversial.
From their own website: "IDSA sent a letter to the House Energy and Commerce Committee opposing the Lyme and Tick-Borne Disease Prevention, Education, and Research Act". Why??????
For entertainment purposes, go to their website and watch the short video.
It is a tragicomedy. Do they actually believe it themselves?
Their position that Pathogenic Mycoplasma Infections and Lyme disease
are NOT chronic conditions is welcomed by Insurance, Employers (like the U.S Goverment) Pharmaceuticals and other parties who otherwise would stand to lose millions in claims or lost profits.
Many IDSA so-called experts have testified against medical doctors
who have treated such infections outside the IDSA rigid protocols.
Do not be surprised if your Doctor downplays the possibility of Lyme or other Pathogenic Infections ( avoiding being black-listed or harassed) , or if you keep getting negative results from all the various tests, consistently.
( A few Labs were suddenly closed after positive findings of Incognitus Fermentans Mycoplasmas-
IGeneX, the only reliable reference Lab, has survived so far.
I'm planning a meeting in the future with Professor Donald Scott - I live just a couple hours away-as he has in his possession relevant official US and Canadian government documentation regarding extremely controversial events and actions in connection with these Infectious conditions.)
I strongly suspect that the interests of health authorities, CDC, FDA,do not coincide with the interests of the people suffering from these conditions.
( Search for " Public Law 107–116-" when FDA and CDC were ordered to comply with better testing and diagnostic procedures for Lyme . It was a step in the right direction , however, NOT MUCH has changed 10 years later-my opinion only- as these agencies are largely self-regulated)
Should one of their high ranking directors get something like Lyme disease,I wonder how they would approach it. LOL!
Another time I will explore inefficiencies, limitations and faults of Tests and Labs.
Hope this helps shed some light.
Niko
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