simplysal
Member
- Joined
- Jun 24, 2011
- Messages
- 20
- Reason
- Learn about ALS
- Country
- UK
- State
- UK
- City
- England
Hi guys/gals....I posted a thread on here, an ALS Poem entitled 'ALS Poem' lol - hardly original but I received a few lovely comments, in particular from Sequoia! I wrote it because at the time, my gut instinct (or paranoia) was telling me that this will be my fate in life and the wording of the poem just came from nowhere....it may not have been eventually related to me or my situation but perhaps someone somewhere reading it could relate to it's contents and may have served as a comfort?
In fact, since that time I had been proactively attempting to remove the poem, not because I was not proud of it but because in my naivety, I forgot to realise that as I typed my full name at the end of the poem, should I google my name into the google search box, so my ALS poem appears. I have two adorable children called Sam who is 13 and Fern who is 9. They mean the world to me. I adore them more than anything and I would always do what I can to prevent hurting them. I have dropped hints to them both that I have had lots of twitches and I'm being sent for tests to find out why I'm twitching but have not told them any more than that. I'm quite a realist with my children and just talk to them about anything frankly - no ugly surprises in their adult years. Of course I sugar coat most things in life naturally. I talk to them about age appropriate stuff however, I can't not tell them anything and then suddenly drop a bombshell to shatter their hearts, I drop little pieces here and little pieces there. What they know is that I twitch all over. What they know is that I have eventually plucked up the courage to go back to my dr to be sent to a Neurologist to try and find out why my muscles party on when there is no need. What my children DO NOT KNOW yet is that my muscles are weak. That I have tripped over a couple of times. That if I lift my leg for even a few seconds, they shake and I have to drop them due to their sheer weight and my lack of strength to keep them up. How my arms are so heavy and my lack of strength lifting them means I have to rest in between simple tasks such as combing my daughter's hair.
How if I smile or pull a face, my entire face twitches.
I'm loosing strength very quickly. I stated to Sequoia when she messaged me about my ALS poem that I have no right really to be an 'active member' until such a time where I feel I have the right to be here. I still have no definiate diagnosis. I have merely gone back to my GP who has sent final blood work before sending the referral to Neurologist. She tested my calcium levels, a blood test called ESR and something else (cann't now remember) but apparently if these come back normal, I'll be sent. Guess what, they have come back normal!
My first noticeable symptoms started in July of this year. I had gone along to a festival camping (as you do lol!). Weather fairly mild however, I found it oddly too cold and really really shivvered like entire body shaking....I sorta lost my appetite and noticed that multiple muscles were randomly twitching. I felt an off/on hot wax feeling running down my left thigh. My walking felt stiff. I was miles and miles away from home and so did not allow it to spoil the weekend however, upon my return home visited my GP to enquire about it. He did a few simple tasks to test my reflexes and as it was my first visit to them about this, he said not to worry, my reflexes seemed okay and said to see how it goes. Unfortunately it has not gone and we're now in October. My muscles twitch daily. My lower arm, my butt, my back on the side, my chest, my face.....I have cramp which are mainly in thigh and feet....my toes on left foot 'get stuck' and cramp and I have to manually lift them back again. I'm walking very stiffly. As mentioned above, I can only hold my legs up for perhaps two seconds before they visibly shake under the weight and I have to lower them. My arms can only be held upwards for a few seconds before I need to drop them. Even my fingers are a little stiff.
I of course cannot diagnose myself. I'm not hoping for someone here to diagnose me either. I have now plucked up the courage to face whatever it is that is malfunctioning and will face my fate hopefully with a little courage and dignity.
I have read many possible reasons for my symptoms. Of course I'm hopeful that it's something that isn't as final as ALS. I'm thinking perhaps MS, perhaps Fibromyalgia and maybe ALS. We'll wait and see. I've just lost so much strength since July. Even my breathing on occasion is short. Perhaps being a tad anxious about it can't help.
I don't know why I'm posting exactly because I'm not really sure what I want anyone to say about it. I suppose you've all been in this position where you're realising that something is going very wrong and are in process of being sent for investigations and our mind runs into overdrive. Perhaps I'm looking for reassurance. Perhaps I just want to hear from those who have 'been there'.
I feel the time has come maybe to stop being logged in and perusing all of your posts in an invincible way and make myself visible instead.
Sorry for long essay. It's hard before any diagnosis is given as I can't talk to partner, children, family and friends about this as don't want to a. worry them unnecessary or to b. give them a migraine going on about it all of the time and coming across as a health anxious freak!.
I have never been one for keeping long stories short lol! Verbal diarrhoea.
Thanks for reading,
Sal xxx
In fact, since that time I had been proactively attempting to remove the poem, not because I was not proud of it but because in my naivety, I forgot to realise that as I typed my full name at the end of the poem, should I google my name into the google search box, so my ALS poem appears. I have two adorable children called Sam who is 13 and Fern who is 9. They mean the world to me. I adore them more than anything and I would always do what I can to prevent hurting them. I have dropped hints to them both that I have had lots of twitches and I'm being sent for tests to find out why I'm twitching but have not told them any more than that. I'm quite a realist with my children and just talk to them about anything frankly - no ugly surprises in their adult years. Of course I sugar coat most things in life naturally. I talk to them about age appropriate stuff however, I can't not tell them anything and then suddenly drop a bombshell to shatter their hearts, I drop little pieces here and little pieces there. What they know is that I twitch all over. What they know is that I have eventually plucked up the courage to go back to my dr to be sent to a Neurologist to try and find out why my muscles party on when there is no need. What my children DO NOT KNOW yet is that my muscles are weak. That I have tripped over a couple of times. That if I lift my leg for even a few seconds, they shake and I have to drop them due to their sheer weight and my lack of strength to keep them up. How my arms are so heavy and my lack of strength lifting them means I have to rest in between simple tasks such as combing my daughter's hair.
How if I smile or pull a face, my entire face twitches.
I'm loosing strength very quickly. I stated to Sequoia when she messaged me about my ALS poem that I have no right really to be an 'active member' until such a time where I feel I have the right to be here. I still have no definiate diagnosis. I have merely gone back to my GP who has sent final blood work before sending the referral to Neurologist. She tested my calcium levels, a blood test called ESR and something else (cann't now remember) but apparently if these come back normal, I'll be sent. Guess what, they have come back normal!
My first noticeable symptoms started in July of this year. I had gone along to a festival camping (as you do lol!). Weather fairly mild however, I found it oddly too cold and really really shivvered like entire body shaking....I sorta lost my appetite and noticed that multiple muscles were randomly twitching. I felt an off/on hot wax feeling running down my left thigh. My walking felt stiff. I was miles and miles away from home and so did not allow it to spoil the weekend however, upon my return home visited my GP to enquire about it. He did a few simple tasks to test my reflexes and as it was my first visit to them about this, he said not to worry, my reflexes seemed okay and said to see how it goes. Unfortunately it has not gone and we're now in October. My muscles twitch daily. My lower arm, my butt, my back on the side, my chest, my face.....I have cramp which are mainly in thigh and feet....my toes on left foot 'get stuck' and cramp and I have to manually lift them back again. I'm walking very stiffly. As mentioned above, I can only hold my legs up for perhaps two seconds before they visibly shake under the weight and I have to lower them. My arms can only be held upwards for a few seconds before I need to drop them. Even my fingers are a little stiff.
I of course cannot diagnose myself. I'm not hoping for someone here to diagnose me either. I have now plucked up the courage to face whatever it is that is malfunctioning and will face my fate hopefully with a little courage and dignity.
I have read many possible reasons for my symptoms. Of course I'm hopeful that it's something that isn't as final as ALS. I'm thinking perhaps MS, perhaps Fibromyalgia and maybe ALS. We'll wait and see. I've just lost so much strength since July. Even my breathing on occasion is short. Perhaps being a tad anxious about it can't help.
I don't know why I'm posting exactly because I'm not really sure what I want anyone to say about it. I suppose you've all been in this position where you're realising that something is going very wrong and are in process of being sent for investigations and our mind runs into overdrive. Perhaps I'm looking for reassurance. Perhaps I just want to hear from those who have 'been there'.
I feel the time has come maybe to stop being logged in and perusing all of your posts in an invincible way and make myself visible instead.
Sorry for long essay. It's hard before any diagnosis is given as I can't talk to partner, children, family and friends about this as don't want to a. worry them unnecessary or to b. give them a migraine going on about it all of the time and coming across as a health anxious freak!.
I have never been one for keeping long stories short lol! Verbal diarrhoea.
Thanks for reading,
Sal xxx
