Crazy last 7 months - very concerned

Status
Not open for further replies.

Vdog

New member
Joined
Jan 27, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Hello all,


Father died of Bulbar onset 2 years ago…

Quick History of the last 7 mths

Received 2nd dose of covid vaccine July 5 …
After that had weird bladder issues for .3-4 months
-urgency
-discharge
-Not able to empty bladder fully
-lots of Sti symptoms no Sti

-All Blood tests were normal , great actually
-Mri on head Normal
-Emg normal but some nerve degen in right Tricept neuro thinks c6 pinched nerves - waiting on MRI of neck results

Bladder Symptoms eased up after 3 mths but weird sensory sensations all over body and noticed twitching in calves

Weird deep ache in right groin which travelled down left leg in A Month (doc thought possible and blood clot) cleared

About week later weird feeling and burning pain moved to other leg (back of legs in the knee pit
-burning sensation
-tired legs (right and left )
-one episode of both calves burning from my ankles to the top of my calves
-Er doctor put me on anti depression meds thinking my nerves were working on over drive ?

Current symptoms
-all joints making a snapping and cracking sound way more the normal
-weak feeling legs , tired and off sensations
-both hands have a deep ache , stiff fingers
-feet ache on and off and calves ache on and off
-Wide spread facciulations …. I can feel them all over some very strong others feel and look like bugs moving under skin of calves - upper and lower extremities and under left eye
-I did some moderate weight and getting extremely sore after a workout and can’t lift the rest of the week… Arms and shoulders

Neurologist suggested maybe a little bit of fibromyalgia but wasn’t sure , also said I was too young for ALS which isn’t true

- Pains seem to move from Joint to joint and hands have a deep ache 24/7

Please help getting married in 5 months and worried I won’t be able to walk down the aisle.

not sure if this is aggressive FALS as pains and feeling of weakness are in all limbs and have come on reasonably aggressive

Questions

1) is it possible for all limbs to be effected all at once with ALS

2) how many ALS had pain early With sensory issues - read something that 60 percent PALS actually have sensory pains or issues

3) can you determine on an emg the differences between let’s say a pinched nerve degen and als

4) aching hands and hand cramp feelings a
Common als symptom ?

5) this is all very tiring … seems like nothing is diagnosed until loss of function which I’m
Trying to avoid so if it is ALS I can take something to delay progression and get married with my soul mate

Any answers , suggestions would be very much appreciated thanks all and stay safe

Vdawg
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,983
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
I'm so sorry for your loss, it is a cruel disease.
Have any other people in your family died of ALS in your lifetime may I ask?
You really aren't describing ALS at all but to your questions:
1. no it doesn't work that way
2. ALS affects the motor neurons not the sensory ones
3. sure can, it's very clear
4. no not at all
5. not a question

FALS does not work that the parent dies of ALS and 2 years later the child has it.

I hope you can get some answers soon, what you describe is just nothing like any ALS onset I've ever heard of. All the best.
 

Vdog

New member
Joined
Jan 27, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Thanks for your reply and thanks for the condolences …. We have a big gap in our family as my great grandfather had my grandpa at 78 .. as far as we know my dad is the only one in the family that had ALS,

First time I went to the hospital doctor pegged me with anxiety and seems every doctor since has been going off that first doctors info

My neurologist didn’t check my legs for faccs and didn’t do any leg strength exercises just said I was too young for this especially only after 2 years. I’m now 44

Questions
1) should I push for Lyme tests ?
2) calves feel strained cramp like feeling is this common in ALS
3) limb onset from one body part to the next can it be fast or generally a slow process ?
4) the constant cracking and popping of joints and feet and legs something that is common in onset of ALS?
5) have you heard of anyone getting this sensation after the vaccine ? Seems like it moved from my bladder to total body …. But aching and burning is often intermittent
6) would you recommend genetic testing to see if it’s possible I carry the gene and would this suggest FALS if so ?

I really appreciate your input as it’s helping easy my nerves somewhat

Vdog
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,983
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
FALS certainly doesn't work the way you are describing, so that's a really good start.
Questions
1. your doctor should decide what testing is needed as they examine you
2. no
3. progression varies but not to the speed of your body-wide issues
4 no
5. discuss vax issues with your doctor it has nothing to do with ALS
6. you need genetic counselling to consider the wisdom of his.

now, it seems you didn't read this, so please read it carefully as our resources here are so limited as we are caring for the terminally ill.
then take your questions to your doctor as nothing can replace medical advice after examination.

I wish you a speedy recovery, please let ALS go and work with your doctor.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,164
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
This doesn't seem neurological at all, least of all ALS. I would suggest that you reconnect with or find a good internist who will work with you to rule out systemic illness.

Best,
Laurie
 

Vdog

New member
Joined
Jan 27, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
Hello All , wanted to give an update and see what you all think … Mri on my neck revelled

1) severe central canel stenosis at C4-C5 and C5-C6
2) severe bilateral neural foraminal stenosis at C5 and C5-C6
3) severe right neural foraminal stenosis at C3-C4

Reason I’m asking is a Neurologist advised me this COULD Be what’s causing my hand aching (both) and heaviness/tired and twitching in both legs and a second doctor had a different opinion and said it’s very unlikely the cervical region could be causing my lower trunk issues.

I have heard of people going through this surgery to later find out that it did very little to resolve leg issues

1) can anyone give me input on my above symptoms and has anyone seen cervical stenosis cause these things ?

2) hand cramping versus hand aching , what’s the difference ?

3) I have atrophy in my right calf and a little in my left calf - based on pictures right calf has changed over the last 3 mths and the muscle looks lumpy and the soleus muscle is almost gone versus 3 mths ago … could this be the beginning of my legs going through atrophy ?

4) reading the “read before posting article “ is mentions a couple cervical issues but not specifically Cervical stenosis … can someone give clarification on if myopathy and radiopathy is the same as stenosis ?

Thanks in advance !
 

Bestfriends14

Very helpful member
Forum Supporter
Joined
May 7, 2017
Messages
1,545
Reason
CALS
Diagnosis
05/2017
Country
CA
State
AB
City
CALGARY
Im so sorry about the loss of your dad. However, I'm really, really sorry, but I think you're posting questions in the wrong forum. This forum answers basic questions about ALS, but this forum does not have anything to do with discussions about cervical issues. Any questions that have nothing to do with ALS must be addressed with your doctor. Any other questions you may have about ALS have already been asked and answered. Therefore, I'm not sure how much more you can glean from this forum as nothing you have posted remotely resembles ALS onset. Please continue working with your docs.

I sincerely wish you the best. Take good care.
 
Last edited:

Vdog

New member
Joined
Jan 27, 2022
Messages
4
Reason
Learn about ALS
Diagnosis
00/0000
Country
CA
My deepest apologies..I’m posting in this forum because my symptoms indeed mimic als and I’m sacred. With a parent dying from this and having weakness both legs , twitching and aching both hands I simply wanted to see if this could be causing my issues … rather then telling people they don’t belong and should not be in this forum…. It’s yet to be determined what causing all this and was hoping could give me a glimmer of hope

I like everyone else is navigating unknown symptoms .. hearing two different things from doctors puts me back into limbo

May I ask 2 questions and I will leave the forum if it’s an issue

1) both hands have a deep ache top and bottom and into my wrists and forearm could this be aggressive als ?

2) is it unheard of to have cramping or aching in all 4 limbs at one time versus one limb or one side
Thank you the condolences about my father I have a hard time telling myself these are all coincidences and not a form of what my dad had
 

affected

Guru status reached
Joined
Apr 26, 2013
Messages
14,983
Reason
Lost a loved one
Diagnosis
05/2013
Country
OZ
State
AU
City
lala land
vdog, we don't have any doctors here, so it would be inappropriate of us to give you this kind of medical advice
I would suggest you get a third specialist opinion since two specialists are saying something different.
I hope you can feel secure in making your decisions with their help, it is a lot to consider and decide on.
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,164
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Proposed spine surgery always calls for a second opinion from a different health system. I would get one.

Yes, severe cervical spine stenosis can most certainly cause leg problems, along with arm issues, bladder and bowel control. If you need decompression and don't get it, damage could be permanent and more than there is now. Thus, the need for a second opinion. 44 seems young for the degree of spine damage specified, but that is something to discuss with your doctor(s), whether there could be another underlying condition or some lifestyle/work factor associated, to make sure that any proposed surgery is on point with the problem.

In no way does what you describe resemble ALS.

All the best.
 
Status
Not open for further replies.
Top