Is als almost decided?

[Jojo31]

Evening everyone !i have recently posted in this wall however after much more research (probably too much) I could really do with any advice on your experiences and knowledge.
I will provide you with a list of symtpoms and could you possibly tell me wether to panic or not!
1)affected gait-limp for several months not painful but ankle not quite working properly.
2) spasticity in left ankle and confirmed clonus
3) babinski present in both feet
4)fasciculations present in both arms and chest
5)possible slight weakness in left arm although arm can still be used to pick up small child of 3!
6)brisk reflexes in left hand side which is also side I which clonus and spasticity and lp is present.
To my knowledge no muscle atropy or clinical weakness.no bulbar issues that I am aware of!
Symptoms are def progressing and doctor agrees
According to my research over today and yesterday it is almost certain that als is the most probable I'm seriously hoping not but knowing if I'm in the right place or not would e appreciated!i know very little of neuro problems but figured you guys are the best ones to ask!
Thanks in advance xxx

 

[ottawa girl]

As I recall, these are your husband's symptoms? You mention that the doctor notes a progression- when will your husband see a neuro?

Until further testing is completed, do yourself (and your unborn child) a favour by staying off the internet, and for goodness sake's - stop diagnosing. We can't diagnose either. We are not doctors. We are here to provide information and support. Please keep in mind that ALS is rare and any one of many other treatable conditions will be considered.

 

[Alyoop]

Nothing has changed except you have gone back to the terrible D R G I IG GLE.
Honestly it could be any of a heap of neurological issues. Don't focus on ALS. It's just too depressing. There are a heap of other treatable, or controllable conditions it may be. Leave the diagnosis in the hands of the specialists. Hard, but exposes entail for all of your mental health.

 

[Alyoop]

Sorry jojo
Everything I write goes to moderation. It will pop up eventually

 

[Jojo31]

Hi all yes you are soooo right I have been back to the land of self diagnosis!i have been online and thought I had found lots of new info which honestly freaked me out!
Surely if diagnosis was this easy then there would be no need for docs right?
Yes ottawagurl the doc did mention that yacky word progression....since adding the fascias to my hubbies symptoms on the net it seemed that als was almost a dead cert and boy do I hope that isn't the case.....no apt for the neuro yet still waiting for that letter.....think that is the worst part!
Thanks so much for your advice and help it is really appreciated and I Don't feel so alone with people who understand xxx

 

[Ms. Pie]

Please wait for your do ctor to give a d ia g no sis before freaking out. You aren't any more qualified to di ag nose than we are. Patience and deep breaths are called for for your own sake as well as the sake of your husband and defenseless unborn baby. Good luck!

 

[Jojo31]

Hi ms pie....I know you are right it is sooooooo hard ;( I'm hoping to find a bit of strength from somewhere!can you imagine how I will be at diagnosis of what ever it turns out to be
I think the Internet is definatley best avoided as it has made my mind up for me before we have even seen the neuro
Thanks xx

 

[Jojo31]

ARGH soooo frustrating....my husbands referral has still not yet come through the door....it is neary two weeks so Di gets crossed it will be any day now...
Since I last posted there had been a very slight change in my husbands gait and limp!last week when we went out he had to walk real slow and was tripping over his left foot!it was very obvious and I was worried however for some reason the last two days his limp has improved immensely....his rigid ankle is still present but he is able to walk without an overly noticeable limp and is able to walk at a quicker pace that I think would be classed as pretty normal! Don't suppose anyone can tell me if this means anything or it could possibly rule out the als threat ?am I kidding my self and living in hope?
I have spoken to my husbad this afternoon and he has been working in his knees a lot today so he informs that his limp has returned but was the slight improvement even short a good sign?
Xxx

 

[vickim]

Yes waiting is hard, but you could be making it harder by focusing on it 24/7. take a deep breath, we have all been there and worring doesn't accomplish anything but grief. Everyone should have hope no matter the diagnosis. This is the season for hope, love and goodwill so try to enjoy it with your family. Patience is a virtue and you will need alot of it. You more than likely will not get a diagnosis on your first visit with the neuro. I am wishing you peace. Good luck.

 

[notme]

ALS simply don't improve--once there is a loss of strength, it never comes back. So, yes his getting better means it isn't ALS--if he is in fact improving.

 

[Luke]

Can't add to what's already been said but just wishing you guys strength and peace during this difficult wait. There's still plenty of room for hope

 

[Jojo31]

Hi guys thanks for the replies ...I must admit I feel a little reassured notme if he has improved slightly! I'm even questioning that somedays......we do have an apt for the referral at neuro but it isn't until the end of feb argh how will I last that long!
In the last few days my husband has said he thinks a patterns I have developed with his gait...it is definatley worse when he has been at work on his knees and appears to be slightly better and less stuff when he is not at work! He is also complaining of a sunburn sensation on his good leg...this leg has no other symtpoms at present apart from this sensation....with regards to his bad leg although his gait is changing he doesn't appear to have any weakness or atrophy to date so I'm crossing my fingers this stays the same! He is also experiencing over sensitive feelings in his bad leg and these have just started!
To everyone in this position my heart is with you....limbo land is not the nicest place to be
Xxxx

 

[vickim]

Maybe try and keep a diary of the good day bad day and what he did during the day. The more information you can give the doctor the better. I wished I had done that because when the doctor is asking alot of questions and you say maybe this or that or around this amount of time its hard for the doctor to determine a time line. Track your husbands progression. Write down questions you have for the doctor, sometime its hard to remember them in the heat of the moment and you are being bombarded by everything. And maybe by doing this it will give you a sense of doing something helpful while you are waiting for the appointment, maybe it can help relieve the stress. I am wishing you peace and love.

 

[Jojo31]

Hi vickim
Thst is a great idea I think I will start that today!at least like you say it will give us chance to track his days! I'm holding into the fact that als doesn't appear to bring good days or burning sensations (from what I have read anyway)so I'm hoping all this could eventually lead to a positive outcome....thank you for your support xx

 

[olly]

Hi jojo,my doctor put me through for an emergency appointment but that still took 4-5wks.
Neurologists here in the uk have a full appointment calander for the year so its a case of when they can fit you in or theres a rare cancellation.
I did the diary thing for the month upto my appointment,sometimes it can be revealing if theres a pattern.
When my neuro looked at it he said to my mum that i have been very ill.
He did find on my first examination that i had clinical weakness in my left leg ,like your husband i find it hard to move it,it tires easily and drags. Also i get (last night it drove me mad) spasticity really bad in that ankle,its stiff but painfull like someone is trying to wring my ankle like a wet cloth.
Like notme said if you have true clinical weakness it does not get better.
Hope you get some answers at your husbands appointment but ofton these things take a lot of time and tests to work out.