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SURVIVING NEUROLOGICAL LIMBO LAND - NO DX Community
533 Members
Avatar universal

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.
28 Responses
1627868 tn?1333889942
Hello and welcome the the group!  This is a great place for support from people who have been through similar experiences.

I am really sorry that you are going through all this!  It sounds like you have your plate full and have been through enough to last a few lifetimes.

While I haven't had many of your problems/symptoms, I can relate to doctors not helping you.  I can also relate to being labeled a "drug seeker".  I think once that is in your file, it is really hard for doctors to take you seriously, which sux!!!  Like you, I was not seeking medications, only someone to help me understand what was wrong with me and why I was feeling so crappy.  I also need to function and not once did I ask for narcotic medications, only for the doctor to figure out what was wrong with me.

How is your PCP?  Do you have one that you can trust to help you and to be on your side?  If not, maybe you should start there.  A good PCP will be there for you and fight with you to find the answers.  

Is the pain your most bothersome symptom right now?  If so, maybe you could also seek out a pain specialist?  There are many options out there that don't include narcotics.  Pain was one of my most bothersome symptoms.

I really feel for you because it SUX to be in pain all the time, especially when no one will help you.  I have had chronic pain for the last 4+ years and it took me until December to find someone who would help me, and without narcotic meds.  Everyone is different and responds differently to each medication, so it may take a little bit to find the right combo.

As far as the walking goes, if your problem is something neurological, your ability to walk may or may not come back.  It just depends on where the damage is, etc.  I have foot drop that started out fairly mild but has progressed to pretty much total loss of movement in my foot/ankle.  I was told at this point, most likely the use will not come back.

I know this is really hard, but chin up!  There are a few of us here, including myself who have gotten diagnosed in the last few months after a few years of searching.  Unfortunately neurological diseases sometimes take a long time to diagnose.  It takes a good, dedicated doctor to follow you over a period of time to watch for changes in you.

Keep that appt, and in the meantime, look for a good pain specialist, possibly a new PCP, and maybe a physiatrist (a movement/rehab doc) to assist you in your search.  And again, welcome!
Take care!
Sarah
Avatar universal
I've been pretty blessed to have a very understanding and helpful PCP.  He has been really supportive throughout the whole process.  When I first contacted him to tell him about what happened with physical therapy and the specialist wanting to send me to acupuncture after the damage PT caused, he was livid.  He sent the neurosurgeon a message demanding he do something with my case, or he was going to refer me to a new neurosurgeon.  My wife and I opted not to see the local neurosurgeon again.  By the time we saw that first neurosurgeon, we already felt like no one was taking me seriously.

I know there has to be an explanation for what happened to me.  I know my case has been mishandled, and I should probably talk to an attorney.  That's not really my style.  I wasn't really upset about any of it until the neurologist suggested I was a drug seeker.  I've been involved in EMS and law enforcement for over 20 years, and I've seen the effects of drugs.  I hate taking over the counter pain meds, let alone narcotics.  I don't want to be on drugs.  Both my PCP and I don't really feel comfortable with pain management until we find out what exactly is wrong with me.  I honestly believe I've got more than one issue going on.  I think I've got ongoing complications from the infection, and I think I've got a neurological condition that was triggered by the situation.

I won't cancel the appointment in July.  I don't care if I have to thumb a ride to St Louis, we will make the appointment.  I'm hoping they can finally get me some answers, because the not knowing is worse than the pain I'm suffering.  The fatique is even worse.  I never used to nap, and now there are times I have to take two naps a day.   I'm only 38 years old.  This isn't right!
1627868 tn?1333889942
I hear you on the drug seeking.  It p****** me off to no end too, to know that I was once labeled a drug seeker.  Errggg!!

I am a nurse and do in home hospice care.  We go into wherever the patient calls home, be it nursing home, assisted living, their own homes, etc.  I have seen more than my fair share of family members stealing meds from patient's, nurses from nursing homes, etc who are hooked, etc, etc.  Being in law enforcement, you know what I am talking about.  I went to school with actually quite a few people who are addicted to prescription drugs and some who have died from heroin or other drug overdoses.  Unfortunately the area that I live in, drugs are a real problem.

I really do pray that you find someone to help you.  There is another forum member who stops in from time to time who is VERY knowledgeable on infectiouse diseases and their relationship to autoimmune and neurological diseases.  I will send him a note to look over your post and give his input.

1142731 tn?1335095649
Hi,  I have so much empathy for you and understand your fustration.  I am also in a situation of not knowing what is whole neurological problem I have battering my body.
I have a good team of medical people and two years on I am still waiting for answers also.  I have lesions on my cervical spinal cord from my C2 to my C6.  I have all the symptoms of MS but no firm dx.

I see my neuro on May 3rd and he is sending me off for another MRI to see what changes may have occured.  I seen my local Doctor last week and whilst he knows and has seen the incredible pain I have been in I know he feels helpless.

Last week I told him I need answers and without them I cannot keep living with not knowing what is wrong with me.  I am also on Morphine and Gabapentin but I have have acute espisodes which are very bad.

I have electric shocks all over my body, sensation of water dripping down my legs.  Jerks which target my legs, arms, torso all so frightening.  I use acane to walk as sometimes ym leg has collapsed and I have fallen.  My legs have a spastic state and I had no use of them.  My mucsles go into spasms, which is so
1142731 tn?1335095649
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
551343 tn?1506834118
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
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