ALS Worry

Status
Not open for further replies.

GusPolinski

New member
Joined
Apr 25, 2021
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
GL
City
Glasgow
Hi All

I have been thinking for some time of a way to word this post so as not to cause offence to any of the members or come across as insensitive in anyway. I extremely admire the courage and help given and I understand my issues may be small in comparison to what others suffer, however I completely struggle to rationalise this.

I have been experiencing worsening symptoms of what I’m worried may be ALS for the last 6-8 months.

The main symptoms I have are constant, visible muscle spasms and jerking all over my body. These are visible to my partner and have been happening constantly for the time scale above. I also have intermittent pain and weakness all over my body and struggle to do any form of exercise or do physical activities with my children. The pain and stiffness is really bad after the slightest form of excercise. When descending from a small hill recently my legs began to completely shake and spasm and almost gave way.

The worry has completely taken over my life and I can no longer work or function normally. I have attended my own GP around 15 times and have attended the emergency room over 20 times.

On each visit I have been given a neurological examination which has always been normal. I have had blood taken around 10 times which was also normal including CK.

My doctor referred me to a consultant neurologist who performed a neurological examination and did not believe any further tests were required. As the examinations only last a couple of minutes my fasciculation's are not present at this moment so I am worried the doctors don’t believe me about this and are therefore missing something. I am also really worried that although no clinical weakness has been observed this will follow soon.

I have a relative with ALS and my mother has a terminal illness.

I sincerely hope that this post does not cause any offence to anyone.

I have attached the letter I received from the neurologist.
 

Attachments

  • C2367A1A-E8D5-40CF-831F-5673873D7F5C.jpeg
    C2367A1A-E8D5-40CF-831F-5673873D7F5C.jpeg
    273.3 KB · Views: 51
  • D41FAFCD-4AF7-4580-866E-6A2FA3A247F4.jpeg
    D41FAFCD-4AF7-4580-866E-6A2FA3A247F4.jpeg
    175.6 KB · Views: 50

Nikki J

Moderator
Joined
Mar 22, 2012
Messages
10,694
Reason
PALS
Diagnosis
04/2014
Country
US
State
MA
City
Boston
Hi
I am sorry about your mother and your other relative You must be terribly worried and stressed.

the presence or absence of fasciculations during the clinical exam would not influence the assessment really. They look for weakness, atrophy and abnormal reflexes and muscle tone. The neurologist apparently found none of these Which is very good news indeed.

the fact that 36 visits have not produced a diagnosis makes the possibility of something being missed very unlikely

it seems to me you have 2 possible courses or you could do both. You can pursue a second neurological opinion You will probably have to pay for a private one at this point. The other choice would be to enter counseling to address your worries about your relatives and yourself. if there are physical issues developing then stress management would be very helpful and dying relatives especially when one is your parent create a very painful situation. There is no shame in getting help

given your multiple medical visits and normal neurological exam it does not seem to me that ALS is likely but if your doctors can’t reassure you I doubt I can.
good luck
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
10,279
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
Gus, I would echo Nikki's advice. I would not waste a second more with a neurologist but rather head to where you can learn how to feel better about all this -- in counseling. Anxiety and depression feed on each other and themselves. They can also have devastating effects on the physical body. If you want to live a normal life, however you define it but surely not this as you are, I would suggest you funnel the energy with which you have pursued a physical diagnosis into the improvement of your equally-important mental health. You and your family will both benefit.

Best,
Laurie
 

GusPolinski

New member
Joined
Apr 25, 2021
Messages
2
Reason
Learn about ALS
Diagnosis
00/0000
Country
UK
State
GL
City
Glasgow
Thank you very much for your replies Nikki & Laurie it is greatly appreciated.

I will try my very best to take your advice. I know I must try to put trust in the medical professionals I have seen

I had got myself into a chain of thought that the neurological examination didn’t mean anything without scans, EMG etc. I asked the doctor about this last week and he explained that they would only do scans etc if they felt it was required following a neuro exam.

I must try to take confidence from the multiple normal neuro exams I’ve received.

Thanks
 
Status
Not open for further replies.
Top