Worried, confused and grieving.

[VWPGSY]

Dear MND connect

My Dad passed away in August at 61 from MND, two days before my wedding - he had the condition for around 8 years.

I am 32 years old.

Whilst still in the throes of grief, I am spending a lot of time in deep anxiety that I am going to inherit this condition and also particularly when I have had the following symptoms this year:

June: Pins and Needles in left arm and left leg - duration: on and off for 2-3 weeks

Sept: "Ticklish"/"Light/weak" left fingers (pinky and forth) and throbbing pain in my forearm sometimes.

In June I had a CTI/MRI scan and they said there was nothing.

I saw the doctor a few days ago, who said I would need a distinct family history for there to be FALS - and as far as we know, there we no other members of my family on either side who had the condition, apart from my Dad.

I have also busied myself reading forums, ALS stories etc and I understand that there is a chance that I could have inherited the faulty gene and have the FALS (Familial ALS ), which typically effects younger people.

I can't tell anymore if the symptoms in my left arm are real or psychological - but I definitely notice the difference when typing for example, my left hand feels a slight bit clumsier, when typing etc, but it's never been my strong hand - also, because I am becoming so anxious about it, I am doing things with my left hand that I might not ordinarily do, which also makes me convince myself it's weaker.

I also weight lift at the gym.


I have been told that the chances I can inherit it are slim, but I've read stories of people who have the illness, whose parent had it. So I am just thinking that's going to happen to me and feel very depressed and anxious about it.

I've read the stickies which are very helpful, but I hope the members don't mind if I reach out like this. I feel very alone and anxious.

Thank you.

 

[dalvin]

Your sensory symptoms are NOT ALS. (Pins and needles, ticklish feeling). With only one family member having ALS your chances are the same as the average person out there. Fals would require at least 2 family members.
See a doc about anxiety issues first. Anxiety can cause all sorts of symptoms.

 

[VWPGSY]

Thanks kindly for the prompt response Dalvin, I agree with the point on anxiety, it's hard because I have all sorts of emotions flying about, including grief, and saw first hand the impact of ALS on my Dad, so that doesn't help me rationalise too well.

I guess what worries me is the fact that my left hand - 2 fingers do feel weaker/disjointed/disconnected.

Thanks again for your response.

 

[cheerleader]

The BEST thing you could do is NOT to read the forum! Our mind can play tricks on us, and since your symptoms are not consistent with ALS, go and live your new married life with joy. Know you are still grieving but your dad would want you to be happy. Sorry for his loss. Donna

 

[VWPGSY]

Thank you Donna, I appreciate your reply.

It's very warming to see and read what an amazing community there is on this forum.

 

[davbo49]

sorry about your dad. i wouldn't let this hold you down. you have a life ahead of you.

 

[VWPGSY]

Thanks Davbo49 for your reply.

 

[Mediasmart]

You also might see a hand specialist...ulnar nerve damage and carpal tunnel are a possibility if you are having trouble. If you go further in investigating ALS, they will need to take those off the table at one point. They are minor things...in my case their "cure" through surgery and subsequent conductivity improvement yet complete loss of strength (clinically measured), atrophy and fasiculations worsened....so just a thought for you.

 

[VWPGSY]

Thanks you Mediasmart for your post.

 

[skipper66]

I just wanted to tell you that I'm really sorry about your father. You are still griefing right now so that in itself can increase your anxiety. My mom passed away 17 years ago from colon cancer and now my dad has ALS. If I have something off balance happens with my body I have a tendency to let my imagination go wild at times too. I'm not saying you don't have something going on but I think you are going to find out that it's a very treatable condition. Please don't read or google too much and increase your worry unnecessarily. Best of luck to you and take care, Kim

 

[VWPGSY]

Thank you Kim for your kind words and advice.

My Father's illness was something we were all coping with, but his passing was very sudden - he was moving from his wheelchair to his armchair (something he did regularly, without assistance) lost his balance, banged his head on the floor and quickly passed out, we couldn't get his breathing machine on fast enough so he fell unconscious, went into a coma, which he was unable to get out of.

I certainly feel sad about it and miss him terribly, and his passing, 2 days before my wedding, was just unimaginable for my family, but he would have wanted the show to go on and would have got extremely annoyed if we'd postponed or cancelled, so we went ahead and had a fantastic day.

I am certainly run down, anxious and grieving, and it's hard to pinpoint whether my "symptoms" are all in my mind or physically happening - it's just little things, like when I hold my wife's hand, my hand just feels odd/weak, but as told by members of this forum/in the stickies/by my doctor, I need to stop occupying myself with it and get on with things.

I am going to do my very best to keep my anxieties under control and focus on making a positive contribution to ALS/MND, and am already organising a fundraising event for early next year and am going to make a monthly salary payment to the UK charity, MND association.

Best wishes.

 

[skipper66]

That had to be hard to have your big day without your dad there. But, I'm sure he was watching over you and was very proud. My mother died two months before I gave birth to our first children : twins.

 

[VWPGSY]

Twins: what a blessing.

I've been very introspective the last few months, life is the most amazing, beautiful, yet perplexing thing. One thing's for sure, I just want to take each day at a time, stop and smell the roses and personally remember there is a lot of joy to be had helping others, in whatever way that you can - there were so many people who helped us with my Dad, and we couldn't have got through it without them.