A year of scary symptoms

[Jackie92]

I’m a 26 year old female

Hi all first I wanna appreciate for the time you guys put to read about the symptoms I’m experiencing and giving feedback.

it all started a year ago when all of a sudden I couldn’t sleep. This followed by daily shakiness abnormal body movements and body ache. I also had skin sensations kind of like paresthesia. It felt like my skin is tingling and crawling sensations. This progressed to body stiffness to the point where I had to quit my job.

Right now my feet are really stiff, achy, I get muscle spasms and as I walk my balance is off. I have s lot of tremor on my hands with weakness and weird sensation. My speech is really slurred and I get vocal cord spasms and trouble swallowing. My throat also occasionally hurts and so does my tongue. My shoulder and hands are also really crampy and so is my neck.

I have burning pain feeling in my lower back where my buttock is. I have trouble grabbing things win my hands. I also get out of breath sometimes.All my symptoms and invisible when I tell people they think it’s all in my head but it’s not. It’s real and it’s making me suicidal.

I have had bunch of testing including rheumatologiical and a brain mri. This all came back normal also my full physical including vitamin defficiencis. My neurologist just ordered emg because I insisted but he checked my reflexes and strength and thinks it’s mormal.

I would really appreciate if you guys gave me ur opinions because the thought that I may have this disease scares me to death. I forgot to mention that my rheumatologist mentioned that I should get an emg.

 

[Jackie92]

Sorry for my typos English is my third language. I didn’t mean to say feet, my legs are really stiff and cramping, not my feet.

 

[KarenNWendyn]

Your description does not suggest ALS. Not a bit.
Top it off with a normal neuro exam, and you’re in the clear. I doubt your EMG will show anything of concern, and hopefully it will reassure you.

 

[lgelb]

Hi Jackie,

I don't know what's wrong with you but it's not ALS. Let us know how the EMG goes.

If the diagnostic process has been going on for a year, you're suicidal and you had to quit your job due to stiffness, you need to reshuffle the deck chairs. In particular you need to have a conscientious internist who can herd cats and advocate for what you need, whether it's counseling to not feel suicidal, or an EMG to rule out some more dx. And you should be aware of what diagnoses are on the table, and how they are going to be ruled out.

I find it hard to believe that everything you've described is always "invisible," which implies at least some of your issues are being exacerbated by anxiety. Only by addressing that anxiety can you separate what is mind and what is not. Get started on that process before more of your young life passes you by.

Best,
Laurie

 

[Jackie92]

Thank you guys so much for finding time to reply. I want you all know how strong you all are. Als is the only disease that hasn’t been ruled out. It’s been a year of ungoing doctors appointments and I feel helpless.

 

[Nikki J]

I agree with the opinion and advice above. I do not think that your statement ALS is the only disease that has not been ruled out is accurate. First there are so many very obscure diseases that you probably have never heard of.

Secondly ALS diagnosis is not a matter of just ruling out other things. It is finding a pattern of abnormalities on clinical exam ( which you apparently did not have) and on EMG and THEN ruling out mimics.

Please get help for your emotional issues as you go through your testing. Let us know how the emg turns out

 

[Jackie92]

Thank you Nikki for ur honest advice. I’ve just had so many tests during this year I think I pretty much checked everything. The emg is the only test I haven’t done.

It’s hard for me to accept its anxiety because it’s not letting me function. I worked at a mental health clinic and I know anxiety can manifest in physical ways but not to the point where u can’t function.

My life was perfect before this. I have an amazing fiancé and family. I never felt depressed at any point.Me and my fiancé just bought a house together and he’s waiting for my to feel better to plan a wedding.There is not a day that I feel ok all the symptoms I have mentioned are pretty much present 24/7 plus many more I forgot to mention. I also get muscle jerking. I can hear my muscles when it happens and it’s quite disturbing.

 

[Atsugi]

Hi Jackie, I'm feeling very sympatico right now, and I really hate knowing you're suffering like this. Let me add a couple things.


First up, forget ALS. No way, no how. You didn't say a single thing that had anything to do with ALS.


The people up above in this thread who have replied to you already: I cannot tell you just how amazingly smart and experienced they are about ALS. They said, politely, that you don't have ALS. I agree. In fact, the neurologist who saw you and physically examined you didn't want to waste time doing an EMG. That's pretty reassuring.


When you said, "ALS is the only disease that hasn't been ruled out," I physically laughed. Sorry, but we'll just chalk that up to hyperbole. If your disease is neurological, there are way over a hundred more possibilities. ALS isn't one of them.


Of course, I see anxiety. But I'm not a doctor. I will, however, assure you that anxiety can indeed manifest very strongly in the physical realm. Even to the point where you cannot physical move because of the painful spasm. I have worn a neck brace for weeks, solely due to stress. Muscles can jam up painfully for weeks on end, "nerves" can cause the extremities to bounce around, making writing impossible, throats get so discombobulated that speaking is embarrassing. I usually put my stress in my back, but sometimes my stomach will spasm painfully, forcing me to lean forward. All stress. Stress can be brought about, I'm sure you know, by either positive or negative things. What changed in your life just before your symptoms first started?



As to suicide, I'm sure you know that these symptoms are temporary, and suicide is permanent. So just set that aside for now.



I hope you have a family doctor. If not, get one. A board-certified medical internist or general practice or family physician with an MD is what you need to do a proper investigation. They are trained to run the investigation, so they will send you to the appropriate specialties to cover all the bases as needed.


My favorite doc is a psychiatrist who not only follows meds, but also does talk therapy. As you know, the psychiatrist is an MD who knows both the body and the mind and how they interact. You can make some phone calls to find one who will give you the full hour to talk, who will develop a relationship so they get to know you inside and out.


Good luck to you. Let us know what the EMG report says.

 

[Jackie92]

Thank you Atsugi I really do appreciate everyone’s concern and honest opinion. I have been really strong for a year and kept telling myself it’s stress and it will
Go away. Until one day I was at work I was feeling so sick and I had a trouble speaking with a patient I ranned to the ladies room and started crying my eyes out. I came back home and decided not to go to work. I’ve been on medical leave for three weeks and I’m not getting any better.I have seen s psychiatrist a few times also a therapist. Psychiatrist prescribed me anti depressant which I did take for over 4 months and hasn’t helped. I am taking gabapentin right now 300 mg a day which kind of helps but I still feel exteemellly fatigued and crampy all over my body. My left leg feels so heavy that I feel like I’m dragging my foot. All of your comments are very reassuring and it did make me feel better because I know you have the experience first hand what it’s like to have als. I will let you guys know how to emg goes. My neurologist said that he will only test my arm and a leg and depending how it goes he will decide if he wants to full body. I guess if he finds anything suspicious that’s going to be the case. Thank you so much for your time.

 

[Jackie92]

Update

Hi everyone. I just wanted to post and help to
Those suffering with health anxiety. I want to take the time and thank all these people who although are suffering from a terminal illness take the time and try to calm down to all of us suffering with health anxiety. You guys are truly one of a kind and I wish you all a painless and comfortable life. If you have physical symptoms that are similar to als symptoms please don’t try to diagnose yourself. I did that for about a year and a half I was terribly depressed because I knew I had the disease and was preparing myself to die. I was in bed depressed sad and mind u doctors kept telling me that I’m fine and this is just anxiety. In my head I kept telling myself that these doctors do not understand anything and I thought I was smarter then them. I was having all this depressed thoughts on why is this happening with me and why am I going to die at such a young age. I was even telling my fiancé that he should not be with me because I’m going to die soon. i didn’t even calm down after seeing a neurologist and insisted him to do emg even though he didn’t see a reason why.I had the test done today and it was normal. I do still have symptoms such as weakness, muscle cramps, heaviness, swallowing
Problems, trouble with my speech but guess what? I’m healthy and I need to accept it. PleAse do yourself a favor and instead of Googling symptoms and waistimg peoples time get tested and get a peace of mind. I hope my experience helps few of you. Thank you

 

[ShiftKicker]

Mod note: moved post to original thread to keep everything on one place

Jackie, thank you for returning to post an ending to your story here. It will help other people who come here and who are feeling anxious.