Year Long Progression of Neurological Symptoms. Exhausted. Angry.

Posted by sherwood06 @sherwood06, 6 days ago

These last few years have been nothing short of exhausting. I am 42, and for the past 1-2 years I have been running from Dr's offices, lab tests, imaging, etc… If a symptom is neurological, good chance I have had it. It's almost a joke. The most consistent symptoms are burning/sweating feet, right-legged weakness, tinnitus, involuntary finger flexion, and overall muscle twitching. My cognition is now greatly impacted as I have brain fog, memory issues, and dampened processing ability. The symptoms tend to come and go. On average, I would say I have 3-5 days of "relief" followed by two weeks of heightened symptoms. There is no catalyst (at the conscious level). I've kept a detailed diary trying to isolate a trigger…diet..sleep..mood..etc… When my sleep is affected, its hypnogogic hallucinations, hypnic jerks, sleep apnea, tinnitus. Daytime symptoms include limb and finger tremors, random shooting pains, headaches. I've heightened my meditation practice, trying to practice greater acceptance and compassion for my situation, but it doesn't seem to matter. I will be hit with new symptoms that seem like cause for concern. Any one of these symptoms could warrant a trip to the ER. (I have stopped taking that route.) In my search for answers, I have had blood work, MRI's, nerve conduction, sleep studies, eeg's, small fiber biopsy, neck surgery (possible stenosis), etc…Nightmare. All the major players have been ruled out. I was recently diagnosed with FND (MGH BOSTON), which at some level makes sense, but it also leaves a lot of uncertainty. Currently, as I type this, I have significant brain fog and my quads are burning (anything my pant is touching) and twitching. Last night I woke up with hissing in my ears (felt like someone had turned up the volume sensitivity) and my head did some random twitching upon waking.
Anything neurological is fair game it seems. As I said, it feels like a bad joke. I'm curious if anyone else has had such a rotating cast of symptoms, with no pattern to presentation, and no resolute cause. I have had trauma in my life, but even PTSD doesn't present in this fashion. I wish I could say I wasn't in good hands, but I am seen at MGH in Boston. If anyone has any advice or suggestions, I would love to hear them. I am open to thoughts on psychosomatic, spiritual, causes as well… Thanks

Interested in more discussions like this? Go to the Brain & Nervous System group.

Hello Sherwood06 and welcome to Connect. I wasn't sure what FND "Functional Neurological Disorder" was, so I looked that up and in doing that, I found a couple links that may be of interest. I looked at the FND Hope site and they have a lot about coping and support. It mentions physiotherapy as a way to "reboot" the operating system in the brain. As I read this, it sounds like your symptoms do match the description of FND. The rare diseases site also mentions another support site and places to look for information about clinical trials. I can imagine how frustrating and upsetting this must be. My first thoughts were about spine issues since I am a spine surgery patient. I did have cervical stenosis and had surgery to free my spinal cord. Spine issues could change in time since the neck surgery that you had, and it does sound like your doctors may haveconsidered those possibilities.
https://rarediseases.org/rare-diseases/fnd/
https://fndhope.org/
Did your doctors at MGH suggest any therapies for FND?

REPLY

Hello @sherwood06

I can hear your frustration in your words and I can certainly understand why you would feel frustrated as well as exhausted.

If you are comfortable answering a few questions, I would be interested in knowing:
Have you had a sleep study? How is your appetite? Have you gained or lost weight?
Do any of your family members have this type of problem? Could this be a side-effect of any new meds or supplements that you are taking?

I would like to invite Rachel, @rwinney, to this conversation. She has had a variety of symptoms, not exactly like yours, but she may be able to shed some light.

REPLY
@jenniferhunter

Hello Sherwood06 and welcome to Connect. I wasn't sure what FND "Functional Neurological Disorder" was, so I looked that up and in doing that, I found a couple links that may be of interest. I looked at the FND Hope site and they have a lot about coping and support. It mentions physiotherapy as a way to "reboot" the operating system in the brain. As I read this, it sounds like your symptoms do match the description of FND. The rare diseases site also mentions another support site and places to look for information about clinical trials. I can imagine how frustrating and upsetting this must be. My first thoughts were about spine issues since I am a spine surgery patient. I did have cervical stenosis and had surgery to free my spinal cord. Spine issues could change in time since the neck surgery that you had, and it does sound like your doctors may haveconsidered those possibilities.
https://rarediseases.org/rare-diseases/fnd/
https://fndhope.org/
Did your doctors at MGH suggest any therapies for FND?

Jump to this post

Thanks for your reply and concern. I had been aware of FND prior to my diagnosis and on many levels, it did sound like the closest "explanation" for the vastness of my symptoms. So yes, during the past 6-8 months I have posted many times on FND Hope and I've read quite a bit on neurosymptoms.org. These are the 2 most reputable sites relative to FND.
I had a c6 c7 fusion to alleviate spinal cord compression (on imaging) which they thought was casuing my symptoms. In hindsight, I'm not sure it was. I've learned that it isn't rare for people to have spinal surgeries, only to find out their neuro issues aren't due to structural issues. Sad.
And regarding physiotherapy, I am / was a high level athlete (hockey) who still stays very active/strong(..as much as I can with what I've been through). I dont say this in a snarky manner, but I think it's safe to say that my own routines would trump any sort of physiotherapy I would be prescribed. My Dr's have echoed that sentiment so they have directed me more towards the psychiatry/psychology routes. As mentioned, I have my own spiritual/meditative practice which I have leaned on, but from a physical symptom standpoint, to not much avail.

REPLY
@hopeful33250

Hello @sherwood06

I can hear your frustration in your words and I can certainly understand why you would feel frustrated as well as exhausted.

If you are comfortable answering a few questions, I would be interested in knowing:
Have you had a sleep study? How is your appetite? Have you gained or lost weight?
Do any of your family members have this type of problem? Could this be a side-effect of any new meds or supplements that you are taking?

I would like to invite Rachel, @rwinney, to this conversation. She has had a variety of symptoms, not exactly like yours, but she may be able to shed some light.

Jump to this post

Hi, thank you for your reply. Yes, I have had one in-lab sleep study, and one at home. Neither were all that conclusive. The problem is these symptoms have to be "flared-up" when I go in otherwise nothing will show. Neither has lined up yet in that manner. I filmed some sleep on my own and shared with doctors. In the study, I definitely had some "sleep movements" during both REM and non REM stages. REM Sleep disorder was discussed, but neither myself nor the specialists believe that is in play. No major thrashing, acting out. Simpler movements, arms, facial ticks, hypnic jerks etc… Last night I had one major "jerk" that rattled me as I went from wake-sleep state, which is normally when they occur. I also had an "olfactory hallucination" where I smelled rot/rubbish/decay for no reason. This would last a few seconds, go away, etc.. So strange. I don't know these "symptoms" even exist / are possible until I experience them and am forced to play Dr Google.
My appetite is fine. No weight issues. Yes @rwinney , would be open to hearing any thoughts you may have.

Thank you.

REPLY
@sherwood06

Hi, thank you for your reply. Yes, I have had one in-lab sleep study, and one at home. Neither were all that conclusive. The problem is these symptoms have to be "flared-up" when I go in otherwise nothing will show. Neither has lined up yet in that manner. I filmed some sleep on my own and shared with doctors. In the study, I definitely had some "sleep movements" during both REM and non REM stages. REM Sleep disorder was discussed, but neither myself nor the specialists believe that is in play. No major thrashing, acting out. Simpler movements, arms, facial ticks, hypnic jerks etc… Last night I had one major "jerk" that rattled me as I went from wake-sleep state, which is normally when they occur. I also had an "olfactory hallucination" where I smelled rot/rubbish/decay for no reason. This would last a few seconds, go away, etc.. So strange. I don't know these "symptoms" even exist / are possible until I experience them and am forced to play Dr Google.
My appetite is fine. No weight issues. Yes @rwinney , would be open to hearing any thoughts you may have.

Thank you.

Jump to this post

@sherwood06,

You still might consider physical therapy or seeing a Physical Medicine and Rehabilitation specialist, also known as a physiatrist.

While you feel that your own exercise regime/activity should be sufficient it would be a good idea to get a second opinion. These folks are trained to get the most out of your body and keep it in good working condition.

Are you willing to try it?

REPLY

Hello. I am a Lewy body Dementia / Atypical Parkinsonism and Myotonic Dystrophy 2 (muscular dystrophy) patient. I can empathize on some of the neurological conditions. You mentioned the olfactory hallucinations – isn't that the worst? I ask people if they "smell that" and the answer is smell what?
Your comment about the diary is something I always suggest to help people help their docs. As you mentioned with the sleep studies – it isnt always an issue so many studies aren't valid. Same with neurological symptoms that arent constant. The doc can't observe them for a clinical finding and you cant just make your body jerk on demand.

Do you find that the more violent movements are in your shoulders? That is where my issue withe these major movements. The others are all over the place.

Do you find that certain social situations are hard? I have problems with larger crowds where there is a lot of people talking. I cant concentrate on one thing but hear everything at once and it is overwhelming.

Have you done any neurocognitive / neuropsych testing? It has helped us to determine which part(s) of the brain are effected.

Sorry for all of the questions – I am intrigued to hear about others experiences. Who knows by chatting with someone that has many neurological issues can shed some light on things.

You've done all of the other tests that I went through. However my nerve conduction study had problems which led to genetic testing and the Myotonic dystrophy diagnosis.

I know it's hard. From someone that faces some of what you are going through – you aren't alone. I have learned to not dwell on the many things I cannot do anymore (drive, walk with my grandchildren in my arms, eat certain foods, avoid certain social situations, tasks like finances, cooking to mention a few) and look at the things I am still blessed to be able to do and some of them better than others. For instance – how many people would take 25 minus to type this? How many people can write a 3 page novel to get a point across that should take a few sentences? How many people can see that spider that isnt really there? Me!!!

Dont lose your sense of humor!!!
It keeps me going.

Peace
Larry H.

REPLY
@larryh123

Hello. I am a Lewy body Dementia / Atypical Parkinsonism and Myotonic Dystrophy 2 (muscular dystrophy) patient. I can empathize on some of the neurological conditions. You mentioned the olfactory hallucinations – isn't that the worst? I ask people if they "smell that" and the answer is smell what?
Your comment about the diary is something I always suggest to help people help their docs. As you mentioned with the sleep studies – it isnt always an issue so many studies aren't valid. Same with neurological symptoms that arent constant. The doc can't observe them for a clinical finding and you cant just make your body jerk on demand.

Do you find that the more violent movements are in your shoulders? That is where my issue withe these major movements. The others are all over the place.

Do you find that certain social situations are hard? I have problems with larger crowds where there is a lot of people talking. I cant concentrate on one thing but hear everything at once and it is overwhelming.

Have you done any neurocognitive / neuropsych testing? It has helped us to determine which part(s) of the brain are effected.

Sorry for all of the questions – I am intrigued to hear about others experiences. Who knows by chatting with someone that has many neurological issues can shed some light on things.

You've done all of the other tests that I went through. However my nerve conduction study had problems which led to genetic testing and the Myotonic dystrophy diagnosis.

I know it's hard. From someone that faces some of what you are going through – you aren't alone. I have learned to not dwell on the many things I cannot do anymore (drive, walk with my grandchildren in my arms, eat certain foods, avoid certain social situations, tasks like finances, cooking to mention a few) and look at the things I am still blessed to be able to do and some of them better than others. For instance – how many people would take 25 minus to type this? How many people can write a 3 page novel to get a point across that should take a few sentences? How many people can see that spider that isnt really there? Me!!!

Dont lose your sense of humor!!!
It keeps me going.

Peace
Larry H.

Jump to this post

Thanks Larry. I know you were joking, but spiders are a main theme to my hypnagogic hallucinations. Those and geometric patterns. Strange. Sorry to hear of your struggles. Do you get any relief? It sounds like you have found some triggers? If so, I am slightly!envious.

Regarding the jerks, even the “presentation” comes in patterns. For instance, this week it’s been one big (upper torso) movement as I’m falling asleep. Other times it’s been a weeks worth of consistent smaller movements. As mentioned, each will phase itself out. How do your present? Deep sleep?
The olfactory hallucinations are new… and yes very strange. Why can’t it be a good smell? I thought today was going to be a decent day, but mid afternoon the burning began in the feet shins and quads… and persisted all day. Weakness in right leg, small twitching muscles all over. Blah…. Not sure where my head is at… or where it should be at. I know I’ve lost my sense of self, and feel my body is disowning me.

REPLY
@hopeful33250

@sherwood06,

You still might consider physical therapy or seeing a Physical Medicine and Rehabilitation specialist, also known as a physiatrist.

While you feel that your own exercise regime/activity should be sufficient it would be a good idea to get a second opinion. These folks are trained to get the most out of your body and keep it in good working condition.

Are you willing to try it?

Jump to this post

I’m open to anything. But physically, outside of right legged weakness, I am fully (physically)functional. I guess I’m not sure what we’d be working on? Burning feet and limbs? Tinnitus? Sleep issues?

REPLY
@sherwood06

Hi, thank you for your reply. Yes, I have had one in-lab sleep study, and one at home. Neither were all that conclusive. The problem is these symptoms have to be "flared-up" when I go in otherwise nothing will show. Neither has lined up yet in that manner. I filmed some sleep on my own and shared with doctors. In the study, I definitely had some "sleep movements" during both REM and non REM stages. REM Sleep disorder was discussed, but neither myself nor the specialists believe that is in play. No major thrashing, acting out. Simpler movements, arms, facial ticks, hypnic jerks etc… Last night I had one major "jerk" that rattled me as I went from wake-sleep state, which is normally when they occur. I also had an "olfactory hallucination" where I smelled rot/rubbish/decay for no reason. This would last a few seconds, go away, etc.. So strange. I don't know these "symptoms" even exist / are possible until I experience them and am forced to play Dr Google.
My appetite is fine. No weight issues. Yes @rwinney , would be open to hearing any thoughts you may have.

Thank you.

Jump to this post

Hello @sherwood06, I'm Rachel, it's nice to meet you. I'm very happy you came to Connect looking for answers, that's how I started out too. Thanks to @hopeful33250 for suggesting I may be of some help.

In reading your posts, I am pleased to learn that you are in tune with physical activity, given your past hockey life, and that you embrace meditation/spirituality. You are in the right direction!

It's unfortunate that you suffer from chronic pain and symptoms, I'm right there with you. It appears FND throws a lot your way, plus your spinal fusions, sleep disturbances, flares, etc…The "vastness of your symptoms", as you mention, brings me to a very familiar place which is Central Sensitization Syndrome (CSS).

I, like you, spun my wheels trying to get a handle on all my "stuff". Yes, a lot of it had diagnoses like Small Fiber Neuropathy, migraine, insomnia, herniated discs, Fuchs Dystrophy….blah, blah, blah, but I discovered there was a much bigger picture that was an umbrella to it all called Central Sensitization Syndrome (CSS). CSS is an upregulation of the Central Nervous System causing the brain to receive louder messages from the body. Once acute issues turn chronic from this upregulation, there is nothing left but to learn how to manage symptoms and find the best quality of life. In order to do so it takes a comprehensive approach of 4 main categories:

Physical
Emotional
Behavioral
Chemical

It appears FND requires this same approach. So much gets out of control when we are fighting to understand what's happening to our bodies. It's kind of like a forest fire that needs to be calmed and managed. There is hope, and a plan.

Do you mind watching this video presentation from Mayo Clinic's Dr. Sletten to help you understand CSS, and see if it hits home? Do you think this lines up with your plethora of symptoms? Will you let me know your thoughts?

REPLY
@seamuspg

Thanks Larry. I know you were joking, but spiders are a main theme to my hypnagogic hallucinations. Those and geometric patterns. Strange. Sorry to hear of your struggles. Do you get any relief? It sounds like you have found some triggers? If so, I am slightly!envious.

Regarding the jerks, even the “presentation” comes in patterns. For instance, this week it’s been one big (upper torso) movement as I’m falling asleep. Other times it’s been a weeks worth of consistent smaller movements. As mentioned, each will phase itself out. How do your present? Deep sleep?
The olfactory hallucinations are new… and yes very strange. Why can’t it be a good smell? I thought today was going to be a decent day, but mid afternoon the burning began in the feet shins and quads… and persisted all day. Weakness in right leg, small twitching muscles all over. Blah…. Not sure where my head is at… or where it should be at. I know I’ve lost my sense of self, and feel my body is disowning me.

Jump to this post

Hello @seamuspg and welcome to Mayo Clinic Connect. It sounds like you have had a number of symptoms that make life more difficult for you.

Have you received a diagnosis or a treatment plan yet?

REPLY

Wow, you have a lot to deal with. I’m kind of in the same boat, since chemotherapy treatments; the last one was way back in early June. I got neuropathy in my feet and hands. I luckily just have the numbness, mostly in my left foot; which doesn’t seem to be getting any worse. My main symptoms are within my abdomen and head. I also have tinnitus. My head symptom is the brain fog. It’s hard to explain what’s going on in my abdomen. It’s like a constant turmoil feeling. No pain involved. In the beginning there was a tightness or constriction feeling around the rib cage and back area. Everything else has been ruled out. Tests were done at the gastroenterologist and thoracic surgeon fields. My oncologist seems to be stumped about my abdominal symptoms. He has prescribed the medication; Duloxetine for the neuropathy 30 mg, but that made me feel very lightheaded. I’m going to ask for the lowest dosage and see what happens with it. I don’t know if this will help with my abdomen symptoms or not.

REPLY
@hopeful33250

Hello @seamuspg and welcome to Mayo Clinic Connect. It sounds like you have had a number of symptoms that make life more difficult for you.

Have you received a diagnosis or a treatment plan yet?

Jump to this post

Thanks.
Diagnosed with FND. Directed towards psychiatry/psychology. 3 month waiting period. Given handouts that direct me towards FND hope website and neurosymptoms.org. In all honesty that’s it… and that’s from the functional neurology clinic at MGH. Why do you ask?

REPLY
Please sign in or register to post a reply.
  Request Appointment