Symptoms for last 2 months- all primary tests and imaging are normal

acuteparabola94

New member
Joined
Aug 2, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
Hello,
I am 28M and the last 2-3 months have been really scary. I am trying to get some opinions before I assume the worst. The first symptom that I had was a sharp tingling pins and needles sensation in the sole of my right foot after I did an intense workout session. I assumed that it was just burnout and did not hit the gym for the next one week but the tingling never went away and actually spread to the other foot as well. I went to my GP who took a whole lot of blood tests and here are the findings from them,

TriGlycerides - 1500 really high
Vit D- 5 Low
Uric acid levels - High


I got medications for all of this but the GP did not give me anything for the tingling in the legs by itself.

This was constant for about a month and a half until about 4 weeks back I hit the gym again and this time cycled very mildly. During the workout, the tingling sensation/numbness spread from my legs into my torso and I immediately stopped working out. When i came back home, the tingling was in my ears and my body was shaking in general. Just a note here the workout session I had was barely a warmup compared to what I have been doing for the last 3 months. In the next two days, I had constant shaking/tremors in my body and the feeling of a heavy chest all the time. I also developed the urge to urinate about 12 times a day and over the next few weeks, my balance was way off and I developed weakness in my entire right side to where my friends told me that I was leaning towards the right when I walk. I also found it really hard to swallow and cough up most things but this is sporadic and happens mostly in the mornings (breakfasts).

I did not have a neurologist that I see regularly so I went to a new Neuro and she did couple of physical tests and found that my reflexes were weak in my knees. She also predicted that this could be variation of GBS ( Guillane Barre Syndrome) and this explains the autonomic reactions of the body. She asked me to go to the ER if I could not swallow or find it difficult to breathe.


I freaked out and went to the ER the next day, where they took a brain MRI and a C and T spine MRIs a chest XRAY and a liver ultrasound with the following results

MRIs:
1. Mild degenerative changes of the cervical spine without significant spinal
canal narrowing, neural foramen narrowing, or abnormal cord signal. No abnormal
intrathecal enhancement.
2. Essentially normal MRI of the thoracic spine without and with contrast.
3. Mild diffuse T1 hypointense marrow signal is nonspecific, but favored to
represent marrow reconversion (such as from anemia, chronic hypoxia, or
obesity). While other diffuse infiltrative or metabolic processes can offer this
appearance, they are statistically less common and should only be considered in
the appropriate clinical setting (such as malignancy and renal osteodystrophy).

Chest Xray: Normal
Liver Ultrasound: Fatty Liver.

The neurologists that saw me in the ER and CDU mostly ruled out GBS or associated autoimmune neruo problems and they did not conduct a spinal tap on me for this reason. I was discharged and to follow up with a leading Neuro with the Emory network of brain health. The funny thing was when I was in the ER and CDU none of these symptoms were very noticable and all the physical exams that was conducted on me did not show loss of strength on either limbs or sides, my tingling in my feet was constant throughout and worse at nights as usual and my gait was off even in the hospital. After the discharge I had a good bout of 4 days when I had negligible symptoms but then about 5 days back, the tremors came back stronger and now I have random muscle cramps in the face and in the most random places on my body like my neck and my lower back. Also one strange thing that I notice is that when I try to drive, my right arm feels weak holding the steering and now I notice that even though my strong arm is the right, I have lost some dexterity and prefer to do things with my left hand instead. I also notice that the way I stand idle is with most of my weight on the left side all the time and that maintaining a straight standing posture is hard for more than 5 mins.

I am scheduled for a EMG in about a month ( the earliest that they could give me ) and now am freaking out about my symptoms. My hands and legs shake on both sides and I have tried to hold most things and my hand shakes for no reason. I also notice that I may be confusing a lot of symptoms or am not reporting them correctly because of the overwhelming amount of them that appear at these random times throughout the day.

I would like to know if any of these look like some initial ALS or MND symptoms of some kind. I am also realizing that I have not really had anxiety before this but now its off the charts and I am spending more time on Google trying to find out whats wrong with me because apparently 4 Neurologists and many NPs and my GP have no clue yet.
 

ShiftKicker

Moderator
Joined
Mar 16, 2015
Messages
7,147
Reason
DX UMND/PLS
Diagnosis
06/2015
Country
CA
State
BC
City
Vancouver
Hello there- please make sure to read here: Read Before Posting as it contains some answers for you. You primary complaint seems to be sensory- ALS is a condition that affects motor control, so sensory issues point away from a disease of the motor neurons. What it may be is definitely something to keep working with your doctors to find out, but what you've written above would not indicate concern for ALS.

Sorry you're going through a health scare- it must be very frustrating. Hopefully your doctors can help with finding answers soon for you.

Take care
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,131
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I've never heard of ALS starting this way.
I can only suggest that you keep working with your doctors, let them direct things and interpret test results, and do all you can to improve your general health in the meantime.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,263
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Your triglyceride level, D level, uric acid and fatty liver diagnosis are typically all related. Fatty liver disease (FLD) is a serious illness that requires ongoing management. If drinking is not an issue, it is called NAFLD (non-alcoholic fatty liver disease).

In this context, ALS doesn't seem relevant at all, and any feelings of weakness, etc. are most likely related to FLD and the factors it correlates with, such as diabetes, obesity, drinking and/or sedentary lifestyle. If these are not factors, issues such as thyroid dysfunction can be a secondary cause. There is a process for sorting all this out and developing a plan. In short, you need to find an internist who can help you improve your health so you can better live your life.

Best,
Laurie
 

acuteparabola94

New member
Joined
Aug 2, 2022
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
GA
Thank you for the prompt response. At this point I am waiting for my EMG tests with my Neurologist. I do not want to be persistent here but my right side weakness is something I have been noticing for the last 2 years or so. I also have difficulty swallowing my own saliva now ( last 2 weeks). I can definitely see that my right side muscles are smaller than the left ( i checked my calf, biceps and my pecs). I also have this numb feeling on the right side of my face for a while now ( 4 weeks). I wake up with all my limbs aching but it goes away once I start moving for the day. I also have these constant shudders and my heart rate is really elevated when waking up ( probably from me not breathing enough when I am asleep). I cough after most swallows ( even just my own saliva). At this point I am really scared and any expert advise would be appreciated.

Love and Thanks.
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
14,279
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Can only echo above but the emg will tell the story. Ask to be on a cancel list and if true emphasize you can be there on very short notice. Especially in these covid times people have to cancel at the last minute. The practice would want to fill those slots when possible so give a good contact number and tell them how fast you could get there
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
15,131
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Expert advice is what doctors will give you by clinical examination and testing.
We can only say that this isn't how we know ALS to start and progress, but that will never replace you working with doctors. What you can do is work on your general health, and coming here is the first thing to replace by an activity that uplifts you and your health.
 
Top