HA Crisis: Everything Under the Sun (ALS,MS,Parkinsons). HELP!

[Nini91]

Hey all,

I'm new here (well new to posting anyway, I've been reading the forum for some months now) I know we all cant "diagnose" each other but it's nice to know that you aren't alone. So here it goes....

This all started in May of this year (mothers day to be exact) I had my first panic attack....the next three weeks were plagued with ER visits, intrusive thoughts, and mental breakdowns. Started to see a therapist and was able to keep it under control. Just when I thought I was on the right track and that anxiety could plague me no more...the twitching started (about a month later).

At first, it was just mild calf cramps that I just brushed off and then the twitching or "fasciculations" started in my thumb and then soon it was all over my body, it drove me mental...so I did what anyone would do (right?) and consulted Dr. Google (P.S. I know this is an awful habit and i need to stop..Im working on it lol) and low and behold....ALS....and down the rabbit hole I fell. It got to the point where I was crying every night because I was thinking my kids would only remember me as the mom who couldn't do anything. I even tried to plan out my last remaining years because I was so convinced I was only going to be alive for 3 more years.

I kind of talked myself off that ledge for a little while but then MS came into play, I was getting random spots of numbness, muscle twitches, vertigo, balance issues, and my vision would go in and out. I started a new job two weeks ago and on my second day I got a bout of vertigo so bad I almost fell...so to the ER I headed...I was there for almost 4 hours and had an MRI done....I expressed my fears of MS and he did a few tests and ordered the MRI..after that was done he told me he initially feared I had a brain tumor (trust me I thought so too) but he told me my MRI was fine, but I did have little white spots...that were "unspecific" and were unrelated to my current symptoms so it pointed away from MS. Wrong thing to say to me, I freaked out! He had to come back in and tell me that the neuro said I looked like I suffered from migraines (which I don't). So here I am freaking out that I'm going to go to the neuro on the 17th of this month and get my death sentence...and I can't think straight.

Here are my current symptoms:

Muscle Twitching (3 months) all over, feet, calves, tongue, lips, cheek, eye, arms, stomach, thighs, butt...literally anywhere your can twitch I twitch.
Balance issues (just feel like I'm always walking to one side, 1 month)
Random spots of numbness and tingling (only lasts a few min at a time)
Shaky Hands (hence my Parkinsons fear)
Increased Saliva (at least I think so)
Constantly feel like my jaw is tight
Feel like my tongue is too big for my mouth
Constantly biting my tongue
and random body jerks (no one even notices them but I do, they happen during the day, but I have a lot a night before I go to sleep that also makes me fear that I have Parkinson's or als but I also know that night jerks are normal because I have had them before but not to this extent...i still sleep pretty good so I try not to worry about the jerks so much. )


I have many people tell me it's anxiety and it's so hard to believe because I have never dealt with this before. I'm so convinced I'm sick it just blows my mind when I get blood work done everything is fine, Calcium, Potassium, Magnesium, B12 all normal. I did have low vitamin D but I recently had that tested again and that was normal as well. Can my brain really make me feel like I have ALS, Parkinsons, and MS?? I hate this...since my balance issues started my hips and knees are constantly hurting and so is my back (but I've always had back issues) I keep googling and everything leads back to those three things ALS, Parkinsons, MS....oh and by the way, I'm 26. One day I'm 100% convinced its ALS, then another day its Parkinsons, and then another its flippin MS! I need help on kicking this cycle...I pray that my neuro visit in 2 weeks will help and give me the all clear, but I'm also scared Ill find out I have some scary disease. I know I shouldn't be worried if the neuro wasn't worried about my first MRI but you hear and read so many scary stories idk what to do.

Anyone else going through the same thing? Sorry, this is so long I just needed to get it all out there.

[PanicJ]

Looks like we have had the same tests and many of the same symptoms. I also have hand shaking, jerks, twitches, numbness, etc and it has been like this for several weeks. I've also had soreness in all of my limbs. I too had an MRI, blood tests, vitamin tests, two neuro visits, with nothing to show for it. I too am freaked out about Parkinson's because of the hand shaking. I am currently on my third week of Zoloft so some of these symptoms may be a bit worse because of that.

Just wanted to let you know that you are not alone and I'm also going through a rotation of MS, Parkinson's and ALS. Apparently, this is pretty common with health anxiety.

Stay sane and remember that we have a lot of company in our boat!

J

[Nini91]

Thanks J!

The amount of relief you get when you realize you really aren't the only one is tremendous :yesyes: . I respond so poorly to medicine that I've been taking the more organic route. I was on buspar but every time I took it I felt like I was having a heart attack, we even tried beta blockers and that did nothing. I just keep telling myself I'm ok, and if it was ALS I wouldn't have good days, and if it was MS the symptoms would be way worse...can't think of a reassurance statement for Parkinson's though...maybe "at least I won't die in 3 years?" lol. I can see why these are common among HA sufferers because they are so scary, and anxiety makes it so real. I just want to kick this anxiety, I'm nervous I'm going to get the all-clear from the Neuro but then find another way to convince myself I'm sick. But you're right "STAY SANE" is my new saying, maybe ill tattoo it on my forehead so when I'm freaking out Ill see it in the mirror lol!

[PanicJ]

Any time. I know how hard it can be feeling all alone. Trust me. I have many of the exact same thoughts about "How long will I have before _____ happens. Stay strong!

[Jett81013]

Hi Nini,
like you, i had my first panic attack this year. I've always been sort of an intense person but I'm going to be 36 this month and i finally just broke down in August.

I feared I had a DVT and then got such severe back pain i thought i had ovarian cancer...within that time frame, i started twitching but didn't pay any mind to it...now that my back pain and calf pain subsided, i'm still twitching....even more so than now...of course i looked it up and all I can think about is ALS.

When i went to the Neuro last month she said everyone twitches and it's not a cause for concern...but it's been a month and i'm going to bug her about it one more time. Anxiety does show up in alot of google searches when listing my symptoms so i guess it really is a possiblity. Apparently the mind can play alot of tricks on you.

i hope all is well with you and wish you luck with everything...let's just all hope its in our mind and we get help for that soon.

[Nini91]

Jett,

I completely understand your fear. Like I said with all my tests coming back clear I was like ok I can narrow things down, but then freaked out because we were ruling out small things! And all that was left (or so I thought) were the big things! I thought i had a lump in my breast, had an ultrasound it was fine, I thought I had a brain tumor, MS, and ALS...I thought the MRI would put me at ease....well it did for the brain tumor because there was no mass the doc told me about ”unspecific” white spots (which he associated with migraines) but I’m just nervous! But I want to reassure you I have been twitching for almost 4 months now, but I have no other symptoms of ALS..just stay positive! I know it’s easier said then done! I have a neurologist appointment in two weeks so I’m hoping for the all clear there! I’ll keep this thread updated!

[Jett81013]

Wishing you all the best! My legs feel weak but i've been walking to and from work (about 1.5 miles) and working out to "test" my strength...all seem OK for now but i still have that *** fear. I mean...it's been 2 months of twitching...and i'm able to do stuff normally with little weakness (feels like nervousness)...i'm assuming it's not the same as the *** weakness?

Oh yes, in July i had a breast cancer scare and my gyn was just like whatever get the mammo and ultrasound...luckily all clear.

[mjh82]

Hello,

Your story sounds eerily familiar to mine.....first scared of brain tumor due to weird head sensations then got the MRI which noted unspecific white spots then I moved on to MS. Went to several neurologists who gave me the all clear that the spots were inconsequential given my lack of MS symptoms then I moved onto the worst of it all ALS. This all started over two years ago. Try to nip this in the bud while you can when it's early. I waited until about 6 months or so ago to treat the anxiety and it's been a slow road. My advice is definitely seek some help like counseling or maybe even medication depending on your doctor's advice.

[Nini91]

MJ,

Thanks! I am currenting in counseling doing some CBT for a few months now, we literally work through each stage. First it was intrusive thoughts and now it’s health anxiety, slowly but surely I’m getting there. I’m hoping this neuro visit on the 17th will begin the real road. But thank you, it’s nice to see that someone’s story is almost exactly the same. I’m trying to stay as positive as possible sometimes it can be real hard. But we are all fighters!!

[Elliejane44]

Hi

I also been having twitching all over for past week. Also get body jerks .

Trying to forget about them but it not easy at bedtime is worst .

It seems to be so common on this forum. Let me know what you neurologist says . I interested to hear outcome

Ellie

[Nini91]

Yea, twitching and the fear of ALS and MS seem to be very very common among people with health anxiety. After having anxiety for a while it seems to be a possible onset of BFS. But I will definitely keep this forum updated once I have my neuro appointment.

[melfish]

I will definitely keep this forum updated once I have my neuro appointment.

That would be great. It's always helpful to hear what an expert has to say about these worrisome symptoms :)

[Thelegend27]

Yep anxiety has a tight grip on you. believe me i feel your pain. jumping from one serious disease to the next.

[Nini91]

Update: So I had my neuro appointment today, and at first I had a mild anxiety attack because you forget you are not the only one going, I saw people with Parkinson’s and people dealing with other horrible diseases and I almost walked out of the building. But other than that my neuro was AMAZING. I told her my concerns, we went over my medical history, and did a neuro exam and she said everything is ok! The only thing that made me a little nervous was my MRI I have now had 3 Neuros (1 neuro from the ER, My Neuro and a colleague of hers) tell me that my MRI doesn’t look like MS. The one thing that she did mention that if I was 65 she wouldn’t even worry about the white matter abnormalities, but I’m 26, she said she really doesn’t know what it, but I still shouldn’t be concerned about it. She told me she was very confident that I didn’t have Parkinsons (her specialty), ALS, or MS. But she still referred to the MS specialist, because she wants him to take a look at my MRI and wants to give me a piece of mind. The best thing about her was she didn’t mention anxiety in a sense she did talk about being overly aware of our bodies and notice things we wouldn’t normally notice, and also our bodies have a natural tremor among other things, and certain things that people do (it’s different for everyone bring them out). I’m still a little worried about MS but she did tell me that it’s nothing to lose sleep over and to enjoy life. So for now I’m just going to accept it for what it is, everything is normal. I do suffer from bad lower back pain, and knee pain but she told me people usually get these things after they have a diagnosis and usually isn’t a present symptom of MS. She also said my balance issues could be Orthostatic Hypotension (which I have been told I have before) or POTS because my heart rate jumps up when i stand. I’ve learned that we really can make things happen with our minds, and once we accept it, it eventually goes away. Everyone stay strong! Don’t google, go see your doctor and believe them when they diagnose you! Stay sane, life is short. Think about it this way, we worry about being sick, but what would we do if we actually were? Try and live life to the fullest! I will continue to update this thread with my two other neuro appointments (with the MS specialist and my follow up with my neuro In Jan) if you have more questions let me know!!

[Nini91]

Update: it’s been a bumpy road, had a good month after my appointment, then last night i had an episode of mild numbness on my face, little prickly feelings that make me itch, even a patch of numbness on my tongue for a few minutes. I have an appointment with a MS specialist (that was already scheduled prior to this episode) at the recommendation of my neuro just as a piece of mind. I’m still interested in what he has to say about the white matter abnormalities that were seen on the MRI. I will make sure to post an update after that appointment which is December 5th. If you have questions or just want to post your experiences as well please feel free to do so. I check this post regularly!

[emmegee]

I have gone through a long MS scare 6 years ago (very similar to your experience), and last year I had a HA episode about ALS with all sorts of perceived symptoms.

My original symptoms were sudden onset of severe headaches, dizziness, exhaustion after mild exertion, alcohol intolerance, ringing in ears, I also had the orthostatic thing where my blood pressure was really low when standing. Neurologist said it is post-viral syndrome or chronic fatigue syndrome, most likely triggered by a viral illness. I had also had a bout of trigeminal neuralgia a year prior which we believe was due to a tooth issue. My MRI also showed white matter. The neurologist said it was normal. I was 40 at the time.

Last year I had cramping, tingling, perceived weakness, etc. I was worried of ALS.

I had neither. My nervous system is super sensitive... and I notice every little feeling in my body. And I have Health anxiety.

[Nini91]

Oh my goodness! Right now I’m just dealing with a bunch of off and on numbness is random spots on my body. trigeminal neuralgia Is my absolute biggest fear right now. I know that some people with MS have this and it scares the living daylights out of me. Even with my health anxiety I am scared to google that beast. I don’t have any symptoms of it I’m just scared lol. My anxiety has really been peaking lately and I’ve been in a downward spiral about trigeminal neuralgia, a stroke, and heart attack, that is mostly because I have been experiencing a lot more heart palpitations some of which make me a little dizzy and just recently found out that I have high cholesterol. So I’m working through all that right now. Thanks for your reply, I just worry because I’m only 26....

[tan235]

Hey, Did you go to the NEURO? What did they say???

---------- Post added at 07:17 ---------- Previous post was at 07:15 ----------

oh ignore my post!!!!!! ha ha sorry will read now!