undiagnosed neurological issues

Posted by bluehorizon @bluehorizon, Fri, Apr 19 4:38am

Hello everyone,

This is my first post here so I hope I've posted in the right place.

I'm a 43 year old male experiencing a cluster of neuro symptoms for the past 2 years which have never been fully investigated as the symptoms flare and then settle for a while. I'm slim and active with a balanced diet and have paroxysmal AF controlled by medication. I've listed the symptoms below in the hope that someone might have some idea as to how best to approach getting a diagnosis etc.

My symptoms are:

numbness and weakness is arms and legs, mainly left side
swallowing difficulties
occasional visual disturbances
tingling, crawling scalp
sensation of strong pulse in head
irregular heartbeat
periods of breathlessness
dizziness and balance issues
fatigue

I understand that these are diffuse symptoms but I'm concerned that they point towards an autoimmune condition or perhaps MS or motor neurone.

I spoke to my GP/doctor around 2 years ago who did schedule an MRI for me which showed 'white spots associated with aging and englarged sphenoid sinus' but the symptoms are unresolved.

I'd be grateful for any advice or guidance.

Thanks,

P

Liked by Dee

Have you seen a neurologist or had any EMGs or nerve studies done?

Liked by Dee

REPLY
@barbbie

Have you seen a neurologist or had any EMGs or nerve studies done?

Jump to this post

Thanks for your reply Barbbie! I had an MRI around 5 years ago. My scan showed some white spots which the Neurologist said were associated with aging. I've had numerous episodes of these neuro symptoms since and I'm concerned that I may have MS or ASL

Liked by Dee

REPLY
@bluehorizon

Thanks for your reply Barbbie! I had an MRI around 5 years ago. My scan showed some white spots which the Neurologist said were associated with aging. I've had numerous episodes of these neuro symptoms since and I'm concerned that I may have MS or ASL

Jump to this post

I have autonomic dysfunction also called dysautonomia, and I have experienced much of what you have listed. I also have a myriad of neurological problems. Testing can tell if you have autonomic dysfunction. I would suggest you start with simple things that have distinctive tests and see what shows up. Also would encourage you to realize that age brings some really interesting things, not necessarily horrible stuff either. Have you done any research or know anyone with MS or ALS?

Liked by Dee, bluehorizon

REPLY
@barbbie

I have autonomic dysfunction also called dysautonomia, and I have experienced much of what you have listed. I also have a myriad of neurological problems. Testing can tell if you have autonomic dysfunction. I would suggest you start with simple things that have distinctive tests and see what shows up. Also would encourage you to realize that age brings some really interesting things, not necessarily horrible stuff either. Have you done any research or know anyone with MS or ALS?

Jump to this post

Thanks again for the reply. I’ve looked into both MS and ALS and see some connections but without testing I’m at a loss to know what it could be. Do you experience twitching in your muscles?

REPLY

Hello @bluehorizon,
Welcome to Mayo Connect! I can certainly understand your concern over these symptoms. To begin with, please note that a lot of neurological disorders are not properly diagnosed until many years after the symptoms appear (this would include MS and PD) and rare neurological disorders might take a lot of investigation at top-notch medical facilities. Therefore, you need to keep persisting to get a diagnosis and to seek the best neurological care you can find.

Do you live near a multi-disciplinary medical center like a university medical school or a Mayo facility?

I feel a bit confused about a doctor saying that the "white spots" were related to aging, given that you are only age 43. I'm guessing that the MRI was done of the brain, is that correct or was the spinal cord included in the MRI? As, @barbbie, mentioned a more thorough neurological workup needs to be done as you investigate these symptoms.

I had early onset PD without the typical symptom of tremors, so it was hard to diagnose as well and I went over 15 years with the symptoms before the diagnosis became more evident. So I would encourage you to seek out a top-notch medical facility, to research a great deal about neurological disorders before you seek a second opinion, to write down all of your symptoms and their frequency. Be sure to include when they were more likely to occur, i.e, at night, after exercise, when you are tired, stressed, before or after meals, etc.

Check out the website for the MS https://www.nationalmssociety.org/What-is-MS and subscribe to their emails, you will learn a lot. Do the same for the Parkinsons's Foundation website and also the Michael J. Fox organization. They will all provide you with weekly and/or monthly emails and you will learn a great deal.

I'm looking forward to hearing from you again. Will you provide updates as to how you doing with your search for a diagnosis?

REPLY

Hello @bluehorizon and @barbbie
I would also like to suggest that you subscribe to a magazine (comes out every other month) called Brain & Life. It has great articles about various neurological disorders and it is completely free. It comes by email and also through the regular mail. Here is where you can subscribe, https://www.brainandlife.org/about-us/about-brain-life/about-the-publication/

At the top of their website, there is a place where you can "Subscribe For Free." I think you will find it interesting as well as helpful.

This same organization also offers YouTube videos. Here is the link for those, https://www.youtube.com/channel/UCFumXOetBWxQokiXkl8y1Wg.

As you continue your neurological education, you might feel more comfortable approaching these subjects with your medical team.

Will you let me know how you are doing?

REPLY
@hopeful33250

Hello @bluehorizon,
Welcome to Mayo Connect! I can certainly understand your concern over these symptoms. To begin with, please note that a lot of neurological disorders are not properly diagnosed until many years after the symptoms appear (this would include MS and PD) and rare neurological disorders might take a lot of investigation at top-notch medical facilities. Therefore, you need to keep persisting to get a diagnosis and to seek the best neurological care you can find.

Do you live near a multi-disciplinary medical center like a university medical school or a Mayo facility?

I feel a bit confused about a doctor saying that the "white spots" were related to aging, given that you are only age 43. I'm guessing that the MRI was done of the brain, is that correct or was the spinal cord included in the MRI? As, @barbbie, mentioned a more thorough neurological workup needs to be done as you investigate these symptoms.

I had early onset PD without the typical symptom of tremors, so it was hard to diagnose as well and I went over 15 years with the symptoms before the diagnosis became more evident. So I would encourage you to seek out a top-notch medical facility, to research a great deal about neurological disorders before you seek a second opinion, to write down all of your symptoms and their frequency. Be sure to include when they were more likely to occur, i.e, at night, after exercise, when you are tired, stressed, before or after meals, etc.

Check out the website for the MS https://www.nationalmssociety.org/What-is-MS and subscribe to their emails, you will learn a lot. Do the same for the Parkinsons's Foundation website and also the Michael J. Fox organization. They will all provide you with weekly and/or monthly emails and you will learn a great deal.

I'm looking forward to hearing from you again. Will you provide updates as to how you doing with your search for a diagnosis?

Jump to this post

Than you Teresa, this is great advice! I'll keep you posted as my work towards seeking a diagnosis continues

REPLY

Hello @bluehorizon

If in fact, you do consider getting a second opinion on your neurological problem, you might find the following Connect conversation helpful. It discusses how to get off to a good start with a new specialist. Here is the link to that discussion,
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/?pg=1#comment-240765
After you read it, will you let me know if you found it helpful?

REPLY
Please login or register to post a reply.