25 Year Old Undiagnosed

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BOB1616
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 1/23/2014 9:16 AM (GMT -6)   
It all started for me August 2013. I was leaving the gym on a very typical day summer day and as soon and I got into the car had the strangest feeling over take me. My first thought was this is it...game over...I basically couldn't move very much could barley talk it was like a shock to my system. I got out of the car laid down on the grass and vomited which made me feel better for the most part. I ended up still feeling a little strange and went to the hospital were they performed and EKG and Echo test on my heart as well as blood tests. All of them were normal with the exception of slightly elevated liver enzymes. (Quick background....I am 25 Years old, 6'2 and 200lb with athletic build and consider myself to be in good shape as I go to the gym 4-5 times a week and have not had any health issues with the exception of some acid reflux and stomache and bowel issues which started the year prior. ) Back to the story..the next day I went to work and started feeling a little dizzy and having these weird body tremor type things. I went to an ear nose and throat doctor who put me on agumentin for a sinus infection...a week later I thought I was getting a little better but I also started noticing what my doctor describes as postural tremors in my hands. When both hands are suspended above a keyboard for example they bounce up and down at a high frequency and when I open my hand and make a fist they have the same rigid type movement. The ear nose and throat doctor ran and MRI with contrast which came back normal with the exception of a sinus infection which is why he ran it in the first place. He then put me on levaquin which I took and had adverse reactions to but he insisted I stay on it however I only took it for 3 days. Next...when I flex my muscles then shake so when I flex and move my arm up and down for example or if I lean forward and move my neck up and down they have the same shaking movement and stiffness. I also began having muscle fisculations all over my body. Both legs, arms, face, neck(a lot), and even abdomen. I went to a neurologist who ran tests and said no chance for MS ect. and looked at the brain MRI with contrast which she agreed was normal. She didn't seemed concerned with me hand tremor which baffled me. I went to a new neuro who is well respected and he did all the tests for reflexes eyes ect and he doesn't feel it is MS and instead feel that It is a result of the levaquin and it will take time to feel better.....I started going back to the gym and now I experience numbness in both hands in the ring and pinky fingers when I sleep at night and I have to shake my hand to make it go away...which is does and comes back(no issues during the day) I also recently had numbness at night in my left upper thigh which also goes away when I get up and walk on it. Lastly one of the most notable symptoms is cracking of joints all over. My neck cracks, my wrists, ankles, shoulder, back ect.

All of these symptoms have been consistent since August with the exception of the dizziness and light headedness which is off and on.

Summary of Symptoms
-Lightheaded dizzy
-postural hand tremor and fingers bounce when I make a fist and open hand.
-Muscle fascinations all over especially in neck
-Cracking neck, shoulders, back, wrists ect.
-Pain in arms
-Stiffness
-New symptom is numbness only at night in both hands and recently upper left thigh that goes away after I move around.

Tests:
-Brain MRI with contrast - Clear
- EEG - Clear
- Heart Echo - Clear
- Blood Tests normal with exception of slight elevated liver enzymes
- C spine MRI no contrast - Clear
- Neck Doppler - Clear
- Two nueros have not found any issues with reflexes ect.

Any help would be appreciated...pretty desperate.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 1/23/2014 3:15 PM (GMT -6)   
Hi BOB

You definitely have something going on! Many of your symptoms might be shared with MS, but others seem quite un-MS. Cracking joints, stiffness (as opposed to tightness) and numbness that goes away all point away from MS.

I have numbness. It came one day and has stayed. It's the results of demyelination on my spine. I will likely have it forever. No amount of movement helps.

You still need answers. Please post on the Lyme board, fibro and perhaps lupus. See what people have to say on those boards. Of course we aren't here to diagnose you but perhaps someone can send you in a helpful direction.

Please ask any specific questions about MS that you might have here, and I'll do my best to answer those. Keep us posted.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

BOB1616
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 1/23/2014 3:27 PM (GMT -6)   
Thank you for your response it is very much appreciated. With MS numbness does it ever present then simply go away with movement? Also I have been reading that with MS numbness can be worse at night which is obviously concerning me, is that true? Also the tremors In my hand I have had since this all started have been labeled as postural tremors, is this consistent with MS? Most notable when I am resting my wrists and have my fingers suspended above the keyboard and they also have cog wheel like motions when I open and close my hands almost like I am flexing my hands. Lastly I hear sometimes that muscle fasciculation are not part of MS however many people still experience them...do they typically happen for 20-30 second intervals all over the body or in singular places.

Thanks again for taking the time.

BOB1616
New Member


Date Joined Jan 2014
Total Posts : 3
   Posted 1/23/2014 3:30 PM (GMT -6)   
Sorry one last thing...Should I push to get another MRI? or push for LP? Initial MRI was over 4 months ago

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 1/25/2014 10:22 AM (GMT -6)   
BOB

Don't apologize. That's why I am here. I would push for answers in whatever way a doctor can get them. Often a doctor will do tests and tell you what they think you don't have. And then they leave it at that. Tell them you are frustrated and have life interfering symptoms. Ask them what they would do. Ask them where to go now.

Lesions can develop fast. It would not be unreasonable to ask for a repeat MRI. if they will only give you one, ask for a brain scan. It's the most common site.

Have you posted on the Parkinson's board? Your tremors are not typical for MS. MS tremors are more commonly essential tremors. They occur while purposeful movement is attempted. For me, it's when I'm reaching for something like a dish in the cupboard. You may also want to post on the fibro board. The on-off numbness and cracking joints is something that people with fibromyalgia deal with.

I'm am not trying to get rid of you!!! I'm just trying to help. Keep asking and don't be sorry! I'm thinking if you.
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.

Post Edited (Gretchen1) : 1/25/2014 11:03:03 AM (GMT-7)


Evanescent Eden
Regular Member


Date Joined Feb 2014
Total Posts : 132
   Posted 2/22/2014 11:47 AM (GMT -6)   
BOB,

I'm mostly from other boards (I am not DX with MS either), but just in case you still see this... I felt the need to respond to you. I agree that you should post on the Parkinson's board if you have not already. Parkinson's is rare when you are young, but it IS possible (look at Michael J. Fox). Parkinson's tremors often subside once you move the body part, and it often starts in only one body part, such as the tongue, the lips or the hand. You wrote a lot and I'm not sure if I have a clear vision of the exact type of tremor that you experience, but with Parkinson's, the tremors usually occur when you are not using the body part, and then subside once you move it. Do you relate to this? It can ALSO affect the tongue, which would limit your ability to talk momentarily. My grandfather suffers from Parkinson's and I have seen it. It can also include freezing while moving (you just freeze in place and cannot move), changes in handwriting (your handwriting may get smaller), VERY stiff, rigid muscles, etc. But not all of this may occur early on. A neurologist should be able to tell if you have it, and I know you have seen some... but I am just advising you to get advice from Parkinson's people. Don't stop until you have an answer from a doctor either. A tremor is serious. I have had some in the past, but oddly, they went away. The only thing I experience now is internal tremor, where it feels like my insides are trembling! Weirdest thing. Not DX with anything except for Fibromyalgia. I'm 26.

Have you gotten anymore answers since you wrote? I hope so. Hopefully you see this. Good luck.

Eris Young
New Member


Date Joined Apr 2017
Total Posts : 1
   Posted 4/29/2017 9:42 AM (GMT -6)   
I know this thread all happened a long time but I came across it when I was having the same or very similar symptoms and really wanted to post because I did find out what was wrong with me. I had tremors and shaking. It was the same as described here. It was all very scary and tests kept coming back negative as well. You mentioned digestive or stomach problems that I also had that. I read your post and tried the things written here and sure enough, that's when the shaking would increase. To cut to the chase, I have a B vitamin deficiency caused by Celiac's disease. The b vitamin thing was causing most of my symptoms. It was not at all what I expected. It feels so good to mostly stop shaking and to have the jerky movements stop. Not everything is back to normal yet but it's way better.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3531
   Posted 4/29/2017 3:08 PM (GMT -6)   
I have celiacs as well. How did you raise your vitamin b levels?!
Diagnosed with MS July 2006

I have no lesions on my soul and so I live with no limits.
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