Scared of neurological disease
Posted , 7 users are following.
Dear all,
I will type maybe a little bit longer post, and sorry if I mistype something as English is not my maternal language.
I really seeking for reassurance as I am scared to death. I am sorry in advance for possibly confusing text, i haven't sorted it in my head still.
My first problems began around four years ago. I had stomach issues involving Helicobacter Pylori and Hiatus Hernia. That caused some chest pain, lack of breath and so on so I was scared that my heart will stop working and used to go to a lot of cardiologist, ambulances etc... That caused a lot of anxiety for me as I was living alone far from home on college. In that time a started feeling my muscles getting tired pretty fast, mostly my shoulders, calves and sometimes even chewing muscles. Back then I visited two neurologist and they said everything is ok, I did some tests for Miastenia and Lyme disease and they were clear. My problem with stomach was found and threated and that's when chest pains stoped and anxiety calmed.
I felt this tiredness in muscles all along but wasn't anxious about them and lived a full life until a year ago when I started telling that I am just waiting for tiredness and weakness to progress.
I graduated veterinary college and started working, came back home in february and then I started feeling like I am getting tired easier even then before, but it wasn't that I couldn't do something. I just felt that if I lean across the table to take something when I get in primary position my legs feel tired and weak. All this four years I had moment when I feel like I am floating while laying in bed, or like there is an earthquake and ground is shaking while sitting. Not always, but sometimes, especially when I am tired. Then a 3-4 months ago I noticed my neck was feeling heavy, like I couldn't keep my head straight, but I could. I noticed that my muscles would start shaking on some most common actions. The most when I am nervous or anxious about some situation, but even without feeling that way.
Then, three months ago worst moment ever came. I went to google and typed neuromuscular diseases reading symptoms of all of them. I came across ALS a that's when biggest problems started. Culdn't sleep, couldn't eat, couldn't think anything except that. I went to see neurologist and she said that all looks ok, she suspected for possible miastenia or polidiscopatia and sent me to emng. She said that if it was ALS i would probably be dead by now. Emng was clear. My antibodies from blood for miastenia were clear.
Then one day I was taking lunch with my friends and it felt like it's hard for me to cut the meat with knife, but I did it. Few days after I got drunk and in the morning my hand(fist) including carpal wrist felt really, really weak. Not all the time but often. Then a month after my right hand fasciculations and fibrilations started all around my extremities, sometimes neck, torso and so on. It was a month ago. I started taking magnesium, b vitamins(but blood tests were ok) and fasciculation are much less for the past five days. Still there but much less. They are not tipical. It is not a long period of time for one musle. It is just i feel it for a second and it is gone, sometimes it is longer. Sometimes like there is a worm under my skin moving. I was on ALS forums, red about peoples experiences and found myself there. For example, one man said that his right hand was shaking while yawning and that he was yawning a lot, and it is the same with me. In that moment when I saw that I jumped out of my skin.
I still do everything with my hand, there is no weakness that I can't but there are moment when I feel like powerlessness while holding something in my hand or just hold hand in some position. I didn't drop anything when I feel it but it is a strong feeling. Also, I got a feeling that when I do something with that hand it's like after activity I feel a couple of fasciculations, and by observing it I think there is a small atrophy, but I am not sure if it is natural that one hand(I am a lefty and this is right) has less developed muscles than other.
I didn't lose strength. I measure grip strength, and it's the same, just this feeling that is driving me crazy, including fast tiredness of other muscles, but fast recovery to.
Please tell me, can all of this be anxiety?
Sorry for the long post,
hope to get some answers.
Thank you in advance
0 likes, 26 replies
Stiffers Rogola
Posted
Hi what you've been through is very similar to me. Over a year ago I experienced a chest pain that caused me to have a panic attack, the pain lasted weeks and lead me to see cardiologists etc. after I got the all clear i started to develop muscle aches, mainly in the calves when I woke up. I thought i had weakness, sometimes I thought my arm would just hang but in the gym I could still curl and bench press heavy weights. I googled these symptoms and worried about MS, but I never got any actual weakness. Next the twitches started to begin, mainly in my calves but then all over. That was it, I had to have ALS. Even as writing this I still have the muscle twitches, my neuro doctor had reassured me that nothing is neurologically with me but that I am 'a little messed up in the head'.
The mind is extremely powerful and you can convince yourself you have these symptoms and they will appear. My Neuro told me that he thinks my mind has been in such anxious state for so long that it developed a lower threshold for pain, causing the muscle aches.
I hope this helps, health anxiety is a thing and doctors can cause it with the things they say to you, please just take away from this that the mind is extremely powerful and can create real physcial symptoms. I noticed I often produced the symptoms of the diseases I read about, before I had heard of them I never experienced their symptoms.
Rogola Stiffers
Posted
Thank you for reply Stiffers!
I really hope that this is anxiety and that I will be better.
Mind is a powerful tool no doubt, it is just so hard to convince myself this all is from anxiety.
Stiffers Rogola
Posted
I agree, it took a neurologist to convince me. One thing I could suggest is to test yourself, I was always worried about weakness but proved myself wrong as I was able to lift weights that I could do before. Perceived weakness is very different to clinical weakness.
Rogola Stiffers
Posted
I am proving myself all the time. I am walking on heels and fingers. I am testing my grip on bathroom scale, and nothing has changed. ironically the hand I feel weak and awkward is stronger than normal one. So the only thing that calms me is these tests where nothing is changing.
MrFrisky Rogola
Posted
Must admit I'd never heard of ALS. Now there's one more thing to worry about!
Stiffers Rogola
Posted
I completely understand, but do you see that there is a definite mental element to your problem? Honestly, your situation is just like mine.
I think it was a few months ago I was worried about my right arm, it was always hurting and I felt like it was just dangling with no control. This went on for weeks and what I discovered was that was focusing so hard on the arm that I was creating a lot of issues myself. A good example is that I kept tensing my arm to check the muscle was still there and to stretch it out, this over time made it ache.
Anxiety can make you perceive weakness, it is well documented. Have you tried any CBT? This problem with health anxiety is extremely common, the therapy can help you create mechanisms to cope and overcome this without needing a doctors reassurance.
On a final note I wanted to mention a study that was done years ago. 30 neurologists all experienced muscle twitching and some cramps too, many perceived weakness in their limbs and worried it was ALS. Out of the 30 of them only one had ALS, the other 29 were experiencing BFS which is completely benign. In my opinion this is because they researched and knew so much about ALS, they may have had an ache one day or a muscle twitch (occurs in healthy people) and assumed the worst. From there anxiety and stress just make the symptoms worse.
Try something for your stress and anxiety, learning methods to cope and handle stressful times is essential.
Rogola Stiffers
Posted
You are right, and I successfully convince myself when I have a better day with weaker symptoms like yesterday. But in days when they are strong it is hard to deal with fear. But hey you are completely right, it all makes sense. There are no worse and better days in neurological diseases. There are just same or worst, can't be better when person has a disease.
I am seeing therapist for two weeks, but she said that while CBT is a possibility she would like to go deeper to root of my fears and dealing with reasons of anxiety and thoughts. So we are going that way right now.
Ironically, while I don't want to anyone to suffer and feels like I do, it is a relief to see people deal with almost same things as I am and still living a life. It is a shame that best years of youth pass by us in worries and a vitious circle of wrong thoughts and beliefs.
Rogola
Posted
So I am here with update.
My weekend and monday were good. I had just a few fasciculations, and wasn't feeling weakness in my right fist almost at all. I had tiredness in muscles which I was having for years but new sensations like fasciculations and right hand weakness stopped. On monday I had tough day working so in the evening immediately after stop using my hand(i was holding something previous while cutting with left hand) my index finger started twitching for a couple of minutes and than twitching started again all over my body. Not as frequent as before but for past couple of days it is here. The difference is that it is now more frequent in my arms, maybe even the similar as in legs, and before weekend it was more frequent in my legs with feeling of tightness in my calves. My hand started again feeling week today, also not as weak as before but this is how started last time.
So, as you can guess the fear is slowly consuming me again. My stomach feels really sick and I want to throw up.
I did a test on saturday and I am positive to helicobacter pilory, for the fourth time. I know it can be a cause of anxiety, it is a well known fact, but these physical symptoms are just not letting me go. It gets better for a couple of days, than it gets back all over again together with scare of a neurological disease.
I hate this.