Sign in to follow this  
enidoreilley

IIH or ALS??

Recommended Posts

I am scheduled for a lumbar puncture after which time I am fully expecting to get a diagnosis of idiopathic intracranial hypertension. My redone MRI showed damage to both my optic nerve as well as a flattened pituitary gland, all of which is highly suggestive of iih. IIH is no walk in the park but it's typically manageable and does not lead to death.

Buuuuut of course my ha is back and I have been having bad pain in my arms and hands - primarily the joints. My arms feel heavy and tired and I have nearly constant muscle fasciculations. Can I have ALS??? I have never really had the headaches that are most suggestive of IIH. I'm so scared that all of my other symptoms are going to turn out are early symptoms of ALS. 

Share this post


Link to post
Share on other sites

Btw, I'm just now scrolling through this forum after having been away for a while and I'm realizing ALS is in the zeitgeist around here. I hope we are all just simply mentally ill and nobody has als!

Share this post


Link to post
Share on other sites
1 hour ago, enidoreilley said:

Btw, I'm just now scrolling through this forum after having been away for a while and I'm realizing ALS is in the zeitgeist around here. I hope we are all just simply mentally ill and nobody has als!

I am having bad als worries right now. Obviously hoping you don't have it, and the fact that this is a regular worry on here is in your favor. If anything the people on here are such a great suppport system and I think they can reassure you much better then I can 

  • Like 1

Share this post


Link to post
Share on other sites
5 hours ago, enidoreilley said:

I am scheduled for a lumbar puncture after which time I am fully expecting to get a diagnosis of idiopathic intracranial hypertension. My redone MRI showed damage to both my optic nerve as well as a flattened pituitary gland, all of which is highly suggestive of iih. IIH is no walk in the park but it's typically manageable and does not lead to death.

Buuuuut of course my ha is back and I have been having bad pain in my arms and hands - primarily the joints. My arms feel heavy and tired and I have nearly constant muscle fasciculations. Can I have ALS??? I have never really had the headaches that are most suggestive of IIH. I'm so scared that all of my other symptoms are going to turn out are early symptoms of ALS. 

Pain is not associated with ALS. Constant anxiety can make your limbs feel heavy and weak. As well as twitches. I had this in my calf and arms for months.. I've been on the ALS forum before (not recommended it only adds to the anxiety) if you would have asked them that same question which I've seen so many times I can't count they would say no.. no ALS. I remember a man in the forum he would ask people with ALS concerns, what can you not do anymore??.. if you can do your normal things you don't have ALS if you are not failing you don't have ALS. His wife was squatting looking at a book and fell over because the muscle in her calf/foot stopped working.. and that was it... It never started working again. A woman went for a jog and felt like she was tripping.. she realized she was dragging her foot.. one woman couldn't hold a half cup.of coffee.. 

I had anxiety over this for seven months. I'll never get that time back. My children had back to back birthdays and I was in the ALS fog so bad I wasn't even mentally there.!!!!! Please stop now.. ALS  anxiety can be a long rabbit hole if you aren't careful.  

ALS is a horrible disease. I wish it didn't exist. It's a very very very rare disease. I had to get a bladder test a few months ago and the Dr said I'll be looking for cancer but bladder cancer is so extremely rare... I looked at the statistics it's literally double the amount of ALS diagnosis... And bladder cancer is super rare... So you can break it down like that it helps... And I know anxiety tells you well why wouldn't I be the one to get it... Well that's anxiety being a jerk and trying to scare you... Anxiety loves scary thoughts. :(

Hugs. It's going to be ok. 

I'm not sure if you are seeing a neuro they can do an emg and rule it out immediately.. if that's what you have to do to get peace of mind do it.. I never did mine I cancelled my appt. I started working out and proving to my mind that my body IS healthy. 

 

 

  • Like 2
  • Thanks 1

Share this post


Link to post
Share on other sites

Thank you thank you. I know. In my head I know. My anxiety is better today. Shortly after I posted this, I got out of bed and did a bunch of push ups. At 4am. Because of anxiety. ::Sigh:: I am feeling better today. I will look into an emg next time I see my neurologist. 

As my husband keeps reminding me, I know that I have a neurological disorder. It's 100000x more likely these neuro symptoms are related to that and not that I am probably the only person in history to have 2 unrelated rare brain diseases.

Share this post


Link to post
Share on other sites
19 minutes ago, enidoreilley said:

Thank you thank you. I know. In my head I know. My anxiety is better today. Shortly after I posted this, I got out of bed and did a bunch of push ups. At 4am. Because of anxiety. ::Sigh:: I am feeling better today. I will look into an emg next time I see my neurologist. 

As my husband keeps reminding me, I know that I have a neurological disorder. It's 100000x more likely these neuro symptoms are related to that and not that I am probably the only person in history to have 2 unrelated rare brain diseases.

Well... Honestly a PCP can rule it out with a reg quick Nero exam.. they do strength tests and reflex tests.. you don't really even need the emg..

I'm glad you feel a little better today. Anxiety is def a day to day thing! :(

It's going to get better, it will .

Share this post


Link to post
Share on other sites
6 hours ago, Holls said:

Well... Honestly a PCP can rule it out with a reg quick Nero exam.. they do strength tests and reflex tests.. you don't really even need the emg..

I'm glad you feel a little better today. Anxiety is def a day to day thing! :(

It's going to get better, it will .

Totally agree.  It will get better with time.  I didn't think it would, but it did.

You probably do not need an EMG.  Just tell your neuro or GP about your fear and ask your neuro or GP to perform a neuro exam.  The ALS experts will tell you it is the gold standard, and they only do an EMG if they have abnormal findings on the clinical and need further investigation.  You may read about people getting lots of EMGs but it is all largely due to patients insisting on it and Drs ordering it to give in to patient demands. 

FWIW I don't think you have it in your future at all ?

Share this post


Link to post
Share on other sites

I love how I am low key going blind from a real illness but I still find space in my life for anxiety over invented illnesses.

Share this post


Link to post
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

Sign in to follow this