Possible ALS/MND? Extremely Worried..

Hello can you tell us how you are right now?

Hello Nowhere Boy,

first of all, I would like to tell you that I am terribly sorry for what you are going through. People shouldn't suffer like that. I can imagine how you feel and how your life has changed: my mother is going through this exact difficult situation now in her life and its frustrating to see her suffer like that. She has many of your symptoms, 1 year now, (hers started with difficulty in speaking, then swallowing etc) and there is no diagnosis. She has done so many tests. We are wondering the same thing "Possible ALS or some other MND?".

Myself (28-year-old woman), on the other hand, suffer from anxiety, panic attacks and so on, so I can relate to you in this aspect of your life.

I want to tell you YOU ARE NOT ALONE. Please, try to be strong! You are a unique and wonderful human being and, as I can understand from your writing, you must have a great character!

In about 2 weeks we'll visit the UK, to see if we can get a diagnosis there. I will write back to tell you how it went.

Please, take care of yourself and again, you are not alone.

To all the sufferers out there, be strong, carry on, never give up hope and "This too, shall pass"!

 

Life can be very difficult when you have chronic illness.  The chances that is ALS are pretty slim.  It took hard work and a lot of study, three trips to the hospital, and finally am understanding my problems.  Yours will show themselves, but you will have to be your own advocate.  I have systemic Sjogrens, which is completely life altering.  It has attacked my lungs, and my nerves.  I was in the hospital for 15 days a year ago, after about 8 days of continuous IV antibiotics, I spiked 104.5 fever.  

The problem is that there are 90 or so autoimmune diseases, which are classified rather haphazardly, because not much is known about them.  I did not find any help with neurologists at all.  I found little help from Rheumatologists.  I went to the Mayo Clinic in Scottsdale where a Neurologist told me there was nothing wrong with me.  At the time he said that to me, my arterial blood gases showed a 53 percent on oxygen.  At 55 you are pretty much on oxygen 24/7.  Lucky me, I found an Immunologist who had studied at the Mayo in Rochester for 6 years.  He is amazing.  Turns out that there are not tests available which diagnose accurately.  For example, I have overlap Sjogrens, CREST as well, which means that I have some of the symptoms for Lupus, and some for Sjogren's.  The test for Lupus is only accurate 50% of the time.  You just need to go at this with the idea that you are responsible for your own health, and begin looking for small routines to soothe your problems.  For example, I have horrific neuropathy with this disease, so I have some numbing cream on the legs and pull compression stockings, the toeless kind, so I can roll them up or down and apply more cream.  

Then, there is the bright side of being handicapped, which I have become.  No one wants to hassle an old lady with a cane or a wheelchair, so when we travel I frequently get bumped to the front of the line.  Counting your blessings is good.  For pain relief, you just need to keep looking for help.  Asking, trying different things, because everyone reacts differently.

i am expecting some breakthroughs soon for some of these illnesses.  They are working on a drug for Sjogrens, maybe it will be ready soon.

if you have an autoimmune disease, you will soon know more about your illness than anyone, after all,it's you that is living it.  

I think the biggest help to me is that you cannot hold your thoughts on two things at once, so if you will immerse yourself in something else, and do not look at the pain.  Even then, mine jumped the banks just yesterday, so I went from 10mgs prednisone to 50 to get it under control.  As luck would have it, I see my immunologist tomorrow, and he will not like this, but it could not be helped.  Now I will have to start the taper again.  Tremors are pretty bad.  I am so sorry that some of you are so very young and have to deal with this.  I had no idea that people just live with severe pain.  Actually, I thought if you had this much pain you would die, but the human body is very resilient.  Just keep looking for those small, incremental, improvements in your quality of life.  

Did you hear anything more about your diagnosis?  I have similar sympthoms.  My advice is be persistent and be an advocate for yourself.   Treat the anxiety aggressively to take that out of the consideration.  

Hi mike, hope you have got your answer by now. I just want to say that u seem to be worriying and getting stressed a lot. anxiety causes any false symptoms and it could feel so real that your mind will be convinced that it is true. please do not take me to be rude but I am saying these out of experience. I felt so many symptoms so real so many times and I did go through so many tests and found out everything is fine and again after a while the same worry starts and the same circle keeps happening. Now I realized that a person can believe in something so much that u'r brain will react according to it and produce the experiencing feelings and chemicals that enhance those feelings and seem it real to you. Your brain can even induce the after effects of anasthesia if you start thinking of how u would feel after anesthesia for a while and seriously get into feeling it. It happened to me when I saw youtube videos of anesthesia after effect funny things and suddenly my lips went a little numb and I jumped out of that thought circle and it went away. I might sound funny but its true. we are just hypochondriacs. take care my friend.

My husband has many of the same symptoms and has been diagnosed with Osteomalacia. Have your phosphorus level checked and contact an endocrinologist.

Hi there Nowhere Boy

I suffer from very similar symptoms to you and I have been absolutely convinced that I have ALS. However I am also prone to anxiety and I have been very stressed at work. I agree with the post above that our minds seem to be able to create these very physical symptoms and the more you worry about it, the worse it becomes. I found the Nomorepanic website section on health anxiety,where there are numerous posts from people like me who have experienced all these horrible symptoms which are all down to anxiety, very reassuring.

Als is fortunately a very rare disease and even more so for someone as young as you. Sometimes when my symptoms are really bad I get terrified again but I am trying to accept that I am my own worst enemy and I'm wasting my life worrying about these things.

So have you heard anything new?

I'm experiencing almost identical symptoms with no diagnosis yet have you heard anything

Mike what did you find out about yourself...What was your diagnosis?

Mike how are you these days?

Hi there, I know that i'm a little late to the party here but when I read your post I HAD to reply. I would very much like to get into contact with you because I have been living with these exact symtpoms since around 2010, so 5 whole years and going on 6(PLEASE LOOK TO THE BOTTOM IF YOU WOULD LIKE TO GET IN TOUCH WITH ME ABOUT THESE SYMPTOMS). I would like to get into personal contact with you because I do not wish to discuss all of my symptoms openly, but so far you have a complete checklist of everything wrong with me. I too saw my primary, a neurologist, a psycologist, a rhuematologist, a sleep specialist and so on and so forth, until I lost my insurance. Now I am basically disabled from these symptoms as well as my other autoimmune disorders. And No one cares because no one knows what's going on. Hell, they can test for my auto immune diseases but have NO idea what causes them or what I can do for them. So that's fun. I also have a sleep disorder. it was termed as DSPS, but I am not certain that this is a clear diagnosis, all I am certain of is the test results, which showed that my brain does NOT stay asleep during my REM cycles. Which is a serious issue leaving me with only a 67% sleep quality rating.

Now, In 2010 I started noticing memory loss, and slurred speech and slowed thought. As well as a persistant dizziness, lowered hand-eye coordination and the jaw and muscle fatigue began. At this point, I would pass out in odd places, fully unable to move. Sometimes this would last only a few minutes, other times hours. And I would cry and be helpless to move speak or control my eyes, as if i was experiencing locked-in syndrome.

Today, I suffer from all of these things, insanely bad anxiety, entire body weakness, INSANE TWITCHING ANYWHERE, often times for my in my calves, as in they will twitch VERY hard for a prolongued amount of time, say 40 minutes. Twitching in my eyes and a muscle in my ear, and in many other places. I get muscle spasms as well which are very painful. Often. At least weekly. 

I have, despite having to take care of myself and going out at least 4 times a week, developed weakness in all of my body. This is coupled with fatigue and both of these things never fade. Although some days, of course, are better than others. Exercise is very difficult, breathing is hard as my chest feels like I can't get enough air in and I end up continuously yawning when i'm exercising, my doctors don't have an answer for any of the previously mentioned things of course as I always run it by them. 

My breathing has been interesting. Again, chest feels heavy, can't fill my lungs. At night it often worries me if i am getting oxygen and that I might die, because I cannot even feel if i am breathing. I will discuss this later.

My balance and co-ordination has been horrible. I am bumping into things, bruising myself, slamming myself into walls, dropping things, forgetting things, hurting others. Every. SIngle. Day now. Because it is SO BAD now. Still, no one seems to notice and my doctors ignore this as well. i have had official "dizziness testing" with a specialist and they found NOTHING.

MY muscles are decaying and moving around is a task as if i've been laying in bed for years. I walk every single day for 6 months now and yet I cannot seem to shake this. Every muscle is tired all the time, and I have to take breaks often, even though I am the sort of person who will push themselves beyond their limit to finish a task instead of opting to take a break.

I have had a sore through issue since before 2010. No idea why. Doctors don't care, again. My voice is fairly horse but not enough to bother me. My thyroid is inflammed/swollen, so my neck feels tender and it is uncomfortable for even small amounts of pressure to be against it such as a collar or a sheet and I have to adjust for this. 

Shaking and judders sometimes down my entire body but often through my head neck and arms. Uncontrolable. Spasms almost. Never had this issue in my life until recently. Now it happens to often that I forget it is not normal.

Chronic fatigue. Check. But of course this can come with a sleep disorder, again my doctors don't care about it and have NO treatement plan. Everything I do is drenched in fatigue. Going to bed i'm tired. Waking up i'm tired. Writing this i'm tired... my eyes feel heavy.. but if i layed down and slept for 10 hours, I would still feel the same exact way. If i did this for the next 10 weeks, I would sitll feel the exact same way.

Emotional Changes: I have become less self-consious, and more worried about hurting myself because of my proneness to accidents now. I often cut, burn, bruise myself every single day. Much care much be taken in anything I do, even simple thingns liek chewing beecause I often mess them up now. I never had this issue before 2010. Never. I was nimble as hell.   So, I cannot say how this has influenced the following, but I now have depression, and even more so anxiety. The anxiety is sort of getting out of hand. I'm not OCD, nor do I have psycological tendencies but I get stressed out at tiny things, easily aggitatted with things that I used to be able to handle well, cannot push myself too hard mentally or I panic. Ah did I mention the new panic attacks. Last time I tried to get a job I kept getting reoccuring panic attackks until I backed down from it. Of course, this could be because I have trouble getting out of bed and making myself food(and often don't even eat because of this), let along working 8 hours a day for minimum wage, but again I do not know.

I often have a burning sensation that I consider to be a fever, however, my doctors never MENTION that I have a fever, so perhaps we are the same here as well. I feel hot feverish and just burning up. almost all of the time. 

Now that it has been 5 years with many of these symptoms, and still passing out occasionally, but less frequently, and basically being locked-in, I have new issues. MY anxiety and depression have been getting worse. My heart races at night and I feel like I should check into the ER, but it is usually 2 AM and so I opt against it , having to tell myself, if I die tongiht then I die tonight nothing I can do at 2 AM. Heart racinng, cann't feel if i'm breathing or not. Entire body numbness.  The numbness i would describe as about feeling ONLY 20% of the feeling, from every singgle nerve, as compared to what it should be. This is not always the case, but it is more often than not it is right now. It isn't cold or anything and yet I can BARELY feel my fingers pounding against the keys on the keyboard. And yet the nuerologist gives me a clean bill of health. lovely. 

I too have a vitamin D deficiency. My doctors don't care, once again. They prescribed my walking in the sun every day 10+ minutes I do this as well as taking a D sublingual, since i cannot absorb well in my gut. I am also now deficient in Iron and Folic acid and B12. Supplementing all of these every single day.

Please, If you are still experiencing these things I would very much like to get into contact with you and perhaps we can join forces and figure out what is wrong with us. Please let me know how I could contact you. Thank you. Incase you don't have a good means of doing so, I will share my skype name, as it has no personal information attached to it , but if you do not use that please leave a way to get in contact with me if you prefer another method.  Audaerin