Started out as severe back pain radiating into my legs

Status
Not open for further replies.

Lecroix

New member
Joined
Jun 15, 2020
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
PA
City
McKeesport
I really have no idea what is wrong with me. I was in a car accident in December and had a bad virus in March which left me with some muscle weakness. I'm 30 years old. From that accident I suffered whiplash with a concussion. I've also had a second concussion this year after hitting my head a second time.

A few weeks ago, I started feeling feverish and sweating at night. I would wake up with numbness randomly in my hands and feet. Then I suffered excruciatingly bad back pain which radiated into my extremities like a sciatica type pain. I went to the hospital three times because it was so bad. They took x ray, CT scan and MRI. All they could find was mild degenerative disc disease, and foraminal stenosis. My doctor said that wouldn't be enough to be causing my symptoms. My back was however tender sore to the touch and burning pain. No idea what caused it. My legs felt sort of heavy and it was hard to walk. My calves feel weak even now. Prednisone helped but eventually I ran out.

Last week, my neck stiffened and was almost as painful as my back was. Radiating into my chest arms and hands. Felt like a carpal tunnel type syndrome. I would see double when standing and got very dizzy. it was hard to even move my neck. I was referred to a neurosurgeon and I'm now also waiting on a neck MRI pending approval from insurance. I noticed a weird sensation in my ribs where it would hurt to breathe and felt like someone was pinching my sides.

Throughout this I've had pins and needles. It started in my feet and hands then now is in my torso at times, chest and even neck and face. At the peak of my neck incident my hands would sometimes feel like when you sleep on them. My gait got all messed up. It is extremely hard to walk.

Last night the pain/discomfort seemed to shift to the back behind my lungs. It felt hard to breathe. Sometimes when I was laying day my oxygen level would go down to 90%. Keep in mind I also have untreated sleep apnea which I had to delay my appointment because of COVID-19. So that doesn't help.

I've had some twitching in my foot, near my knee and my arms at random times especially when first waking up. And then a feeling like bugs are crawling under my skin.

It seems like all of this came on too suddenly to be ALS, but I am definitely scared and feel like each day is a struggle. I also passed a few strength tests and what not. What do you guys think?
 

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
9,357
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
It sounds absolutely awful to have so much pain but absolutely nothing at all like ALS. Hope you get answers soon but take ALS off your list
 

Lecroix

New member
Joined
Jun 15, 2020
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
PA
City
McKeesport
Thanks. My brain doesn't always feel like it's in control of my body, especially when I stand up. I hope I can get some answers soon!
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
8,890
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Any pain is magnified by lack of refreshing sleep. Entry level CPAPs are pretty cheap -- I see one for $249 at cpap.com. If you can afford that would ask your PCP to write for one that you can then order, with a mask, and try, starting at the lowest possible setting (4). Or I would find a doc who knows how to write the at-home sleep test that you can get in the mail and with many plans justify insurance reimbursement that way. I would make sure your mattress is up to the job of supporting your spine (many traditional coil mattresses are not), likewise your pillow for your neck, and add a fan to your setup.

The good news is, if this is soft tissue damage resolving or a disk problem not seen on the studies in fine enough detail as yet, rest and conservative therapy should help (I would also ask about PT), and you will have more info from the forthcoming MRI. But agreed, you're in the wrong place here. I hope you find relief soon.

Best,
Laurie
 

Lecroix

New member
Joined
Jun 15, 2020
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
PA
City
McKeesport
So while in the ER I was referred to Neurologist whom I am seeing July 2nd. I started having more random twitching around my body. Sometimes it's a pretty intense jerk. But it doesn't really last very long. I've had one just recently near my chin. My neck is still stiff, sometimes in pain and when I chew the right side of my neck feels off. Constant neck spasms and my back still is sore. I do have GERD and allergies and sometimes my voice is a little hoarse sounding. Could a head injury / whiplash lead to this? Still doesn't sound like ALS right? I still have clinical strength and it doesn't seem likely it would affect my entire body simultaneously, right?
 

KimT

Extremely helpful member
Forum Supporter
Joined
Nov 18, 2014
Messages
3,974
Reason
PALS
Diagnosis
08/2015
Country
US
State
South
City
The Beach
Absolutely nothing you posted sounds remotely like ALS. GERD can make your voice very hoarse.
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,690
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
Many neurologists never see a case of ALS in their careers, and most rarely do. So being referred to a neurologist in no way means ALS is on the table. You are completely correct, nothing you are experiencing is even remotely like ALS, I'm so glad to hear this. I hope you get this sorted soon, the pain must be awful.
 

Lecroix

New member
Joined
Jun 15, 2020
Messages
6
Reason
Learn about ALS
Diagnosis
00/0000
Country
US
State
PA
City
McKeesport
Thanks guys. I hope I can get some sort of diagnosis to what is wrong with me or closure soon. Even my lymph nodes in my neck and throat feel like they are on fire. I hope it isn't anything too serious. Its been really stressful
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
12,690
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
ALS is not an infection of any kind so lymph node involvement tells me you should go urgently to your doctor. This is the end of the help we can give.
 
Status
Not open for further replies.
Top