Hancock back with a vengence from Anxietyzone - ALS fears made it full circle

[Hancock]

Hey there ladies and gents, not sure if some of my fellows from Anxietyzone made it over here as our wonderful, neurotic site has been closed. It kind of came as a shock to me as I had not been active on the forums over there for the past eight months or so.

Well, it happened. I am in health anxiety hell again.

A brief history: back in August 2015 I had a full mental health relapse, and that included a barrage of somatic symptoms. Burning/tingling/numbness/pain/etc sensations during a week trip away from home visiting some friends. I've had hypochondria episodes before, and as luck would have it, I was about to spiral into another one. I convinced myself that I had MS, and began googling like crazy. Of course, the tie was between anxiety and MS but I was thoroughly convinced I was ill. When I came back home, I continued to google and stumbled upon three not so pleasant letters (ALS). I noticed twitching was a symptom and weakness. Well I already felt weak but that was definitely the MS, so I dismissed it. Lo and behold a few hours later and I began twitching from head to toe; I flipped out. Went absolutely batsh*t and dragged my sorry butt to my GP who told me anxiety and gave me medication. A week later I was back and he sent me to a neuro for peace of mind. When I went, she did all the neat things they do (she was a specialist who trained at Cleveland Clinic) and spent about an hour with me, testing me, and listening to my nonsense.

She concluded it was anxiety, saw no muscle loss or wastage, no weakness, no spasticity, and my reflexes were normal, thus no need for further investigation.

I then hopped onto the anxietyzone board because of course I did what all good hypos do and doubted her diagnosis. I googled myself into a mental wreckage by seeing all the good things you can dig up on this tragic disease: yes, there were people in their 20s and 30s being diagnosed (I'm 22, by the way), yes sometimes twitching comes before weakness (usually 6 months, rarely a year), sometimes progression is slow, sometimes it can be missed by the docs, but for the most part people notice a very clear deficit in their speech, coordination, and strength along with twitching (if they even notice that).

So here's my dilemma. I am now 1 year and almost 5 months into my twitching garbage. I got off my medication a few weeks ago thinking I had conquered the beast and was free to go. I was wrong. I obviously began having some somatic symptoms again after getting off my Paxil regiment, and I ignored them. As the withdrawal continued, I stumbled upon those three little letters again on facebook a few nights ago. I don't know what happened but my mind just broke. I began imagining it again, that this was happening to me. I tried to look back at all my time and nothing apparent happening but it didn't help.

I just bought a condo with my fiancee and we're a week away from moving in. We are planning on starting a family within the next year or two. We adopted a little chihuahua 5 months ago thats become my best friend. I just got a good job at a bank. I fear the loss of these things more than I fear anything, and I know thats what my brain is playing at, but I can't shake what my body is doing to me.

My right side feels weak, I feel as though I can still do everything I could previously although with a bit of exhaustion (and of course, since I've been having panic attacks every day, I'm sure thats a contributing factor), my twitches have kicked up a notch, my left shoulder and arm feel clumsy, and my left leg does as well. I've been self testing again and I have passed all the typical tests the neurologist did on me over a year ago. I can't see progression as being this slow obviously, but now I'm stuck on "what if this is new?".

I'm an absolute wreck. I can barely eat, I don't want to shower, I don't do much besides work and come home and maybe not cry if I'm lucky. I'm a 22 year old female and I know statistics tell me 1 in 1,650,000.

But all i've been doing is torturing myself with videos. Reading articles. Reading about people's initial symptoms. It's been an obsessive compulsive hell I can't seem to break and I need some help. I started my meds again, going to the doc this thursday, and trying to keep it together but god knows I'm not doing the best job.

Please knock some sense into the person who used to knock sense into people daily. I'm just not doing good at all.

[Josh1234]

Hi, Han. You know me, and helped me through my darkest ALS phobia. You know it's nonsense. There is nothing wrong with you. Paxil known for hellacious withdrawal. Either get back on the Paxil, or just rough it out for a bit, but you know damn well you don't have ALS. You know far too much about how it works and what it looks like. Stop the madness!

[SLA]

So, looking at your post I can see that you are obviously aware that there is most likely nothing wrong. It's good to see someone on here who is actually self-aware, and can rationalise parts of there problem.

A few things stand out. You are still focussed on "finding reasons" why you do have it, rather than why you don't.

You've panicked yourself into believing you do have MS/ALS, and when you do that you look for reasons to validate it. Then it becomes a belief. "I must have it!"

Then you panic again, find evidence to support it, and the belief becomes stronger. Before you know it you're tired, anxious and depressed.

At some point you need to break the cycle. It's all an illusion created from fear.

Rationalise each aspect of it individually, and do not build it up into "this big thing."

Also, get on top of your diet. If you're not eating well, it will only make your anxiety worse.

[Colicab85]

Also, as a fellow ALS anxiety sufferer, you must stop your googling immediately.

I became bogged down with terrible stories and things and it just made everything so much worse. My belief and the googling of stories caused massive depression which I'm still struggling with. I'm sure you know this but the sooner you quit it the better.

[Fishmanpa]

There are a lot of AZ folks that came here Hancock. Also a lot of ALS threads recently too. It must be ALS and Lymph node season

I recall some of your threads on AZ. The ALS rabbit hole is deep and narrow for sure. To add what others are advising, under no circumstance visit, join or post on an ALS forum. It's extremely disrespectful to those actually suffering.

Positive thoughts

[AntsyVee]

Hey girl! Nice to hear from you, though I wish it was not under these circumstances. I came over here too to stay in touch with people, even though they have no PTSD place I can see. I may talk to their admin about adding one.

I think it's time for you to accept you're just gonna have to stay on the Paxil. I've accepted that I'm staying on Lexapro, even if my PTSD is getting better. Some of us are just prone to anxiety from birth, and that's the way it it with us. So we stay on the meds. Could be worse. At least we found meds that work.

[Sphincterclench]

Hey Hancock, I remember you from AZ

meds arent such a terrible thing. as long as I dont have to spiral again to that very dark place where I spend all of my time waiting for death to take me or considering taking matters in to my own hand to avoid the wasting from whatever disease dujour I was obsessing over

I will take the meds every time.

[nivekc251]

Anxiety is like having your fist clinched and holding onto whatever it is you're fearing, and your hand is stuck in a tree knot. The only way to get out of it is to let it go. You know when your mind is anxious anything you read you compare it to yourself and latch onto it. When you aren't anxious you can read the same thing and get a peace of mind and realize how u differ from individual. You know the red flags and you know you don't have them it's just a fear of developing them. Let it go dawg do it for the poor souls who actually have the disease. This is what I keep telling myself lol u got this $hi+

[SadguyFL]

Medicine is what saved me from my deepest low I've ever had a few years ago. Of course it's not the answer to everything as I'm currently going through a huge fear. But it does help.

Hey Hancock, I remember you from AZ

meds arent such a terrible thing. as long as I dont have to spiral again to that very dark place where I spend all of my time waiting for death to take me or considering taking matters in to my own hand to avoid the wasting from whatever disease dujour I was obsessing over

I will take the meds every time.

[MyNameIsTerry]

Hi, Han. You know me, and helped me through my darkest ALS phobia. You know it's nonsense. There is nothing wrong with you. Paxil known for hellacious withdrawal. Either get back on the Paxil, or just rough it out for a bit, but you know damn well you don't have ALS. You know far too much about how it works and what it looks like. Stop the madness!

Yeah, it's one of the worst two along with Venlafaxine. I've read before that these can bring those electric shock twinges so I'm wondering whether some of those could be getting bundled in with the ALS symptoms worries?

Hancock, all those compulsions you are doing are not only trapping you but are also spiking your anxiety. I'm an OCD sufferer and my compulsions dragged me deeper into the spiral. What can you do to resist them? What can you do to eliminate them? This means sitting with your thoughts and resisting urges but the more you do this, the more they will become less needed to you. It took me years to stop mine as there were so many different aspects (I'm not a HAer) but it really does help.