No idea where this belongs (maybe ALS/ MS?), and this is long.

[mlp123]

I am a 45 year old mom of three. I have terrible health anxiety that is the result of both a long history of general anxiety, and a bunch of actual health stuff. For example, once I started breast screening, every mammogram resulted in a call back, ultrasound, biopsy, etc., and so now I am terrified of my annual mammogram, and spend a lot of time worried about inflammatory breast cancer. I am at higher risk of breast cancer due to so many benign findings and family history. I have terrible gastrointestinal symptoms, diagnosed SIBO, and IBS, and recently did a stool test that showed fecal occult blood. I am now having that rechecked and am actually submitting that test to my doctor today or tomorrow. It is probably IBS/ SIBO, as I had a clear colonoscopy in 2016, but I still have to check it and go through the anxiety of testing and waiting for the result and possibly a colonoscopy during covid.

The reason for my post though is mostly having to do with neurological symptoms. I have had three significant episodes of symptoms. In 2018 while my emotionally neglectful hoarder mother was dying, the day I signed the hospice paperwork for her I suddenly had vertigo, visual disturbances, dysautonomia type symptoms, crazy low blood pressure. This episode went on for a few months, I was evaluated by a very highly regarded university neurologist who specializes in dysautonomia, and all tests were normal. I had a clear brain MRI at that time. In 2019, after a trip to Central America, I got a severe GI illness upon my return home, and after a month of remaining ill and losing lots of fluids, my feet and legs went numb and I had a lot of visual and cognitive symptoms. Testing revealed that I have Pernicious Anemia (B12 deficiency, my stomach doesn't process it), and the illness pushed the B12 issue to the forefront. I started a course of B12 injections and have continued them regularly, and my neurological symptoms went away and stayed away until November of 2020.

I am in the US, and I was VERY ANXIOUS ABOUT THE ELECTION. Also, I am supervising remote learning for my three kids. I recognize there were and are some stressors. I have lost 30 pounds since my kids started school due to being so anxious (or because I have colon cancer, see above). I was previously a mental health professional, and I understand somatic disorders, and I work with a trauma therapist twice weekly, so I understand that what I could be experiencing is a functional neurological disorder or something along those lines. Nothing I have done medically has done anything to help my symptoms- not adding more B12, or more potassium, or magnesium. My doctor prescribed a short course of steroids just to see if it might help, and that not only did not help, but it resulted in me breaking out in hives all over and in getting oral thrush. The oral thrush made it difficult to swallow. I think I also have some GERD which makes it difficult to swallow. And now, in addition to the tingling and weird sensations in my right leg and left arm, I am twitching all over. The twitching all over has led me to a new worry- ALS. I had actually reached a point where I was HOPEFUL that I might have MS, because it is not fatal and has effective treatment. But once the twitching started, I focused on ALS and have spent as many as 6-7 hours a day reading about ALS. I know rationally that numbness and tingling doesn't fit that, and that cognitive fog doesn't fit, and blurred vision doesn't fit- but I keep going back to ALS.

I have not done a good job of ANYTHING I should be doing to manage my anxiety. I "know" better. I am still Googling all day. I am constantly distracting myself by scrolling Twitter to read news about politics. I have a terrible time meditating, it makes my anxiety worse. I previously dealt with my anxiety through exercise, but due to my neurological symptoms I have not exercised and have mostly been in bed for the last two months. I can walk/ move, but I am often lightheaded and walking makes me more aware of my leg and foot sensations, which I want to avoid. I have done tiny amounts of walking just to prove to myself I don't have ALS associated weakness. I have a new neurology appointment in March, which seems like forever from now. Anytime within the day that I feel a little better, the twitching starts and the anxiety starts all over, and I am back to ALS even though it doesn't even make sense except for the twitching and swallowing problems (which are explained by other things). I am going to see a psychiatrist on Friday, as right now I am taking some Xanax from my primary care doctor but obviously need more or something different. I have been resistant to medications because my mom was a disaster and WAY overmedicated, and if there is anything I know for sure, it is that I don't want to turn into my mom. My therapist has assigned two workbooks for me that will arrive tomorrow, and I am going to work through those.

I guess I am posting to see if anyone can speak to how to address health anxiety when there are actual health issues. I know we all have actual health issues, so this may not be special or different. All of the anxiety and neurological stuff, and my decreased level of functioning has also created a new problem for me- depression. Severe depression with lots of crying, which is new. And the not eating due to anxiety along with the GI issues is also a huge problem. There is a chance that my neurological symptoms are related to malnutrition and malabsorption. Thanks for listening to my long story. I am trying to stay here rather than the ALS/MS forums and FB groups.

[Lana]

Dear,

I am very sorry you have such a hard time, and I am hoping it will get better soon. I just wanted to offer some words of hope, consolation and encouragement, from my own experience.
My anxiety started when I was about 44 years old, and I am now more than 10 years older. It started with horrible fear of colon cancer, so I had my colonoscopy then, immediately, which was all clear. However, the vicious circle continued, and I honestly have no idea how many illnesses I "had". I saw numerous doctors, I saw 7 different psychiatrists/therapists, and was on Clonopin , Zoloft and Lexapro for years. Nothing really helped, or rather, every relief was short lived. Now looking back, I believe I have suffered from severe PTSD (I came to the USA from a war ravaged country), but also very severe post partum depression. None of the "highly qualified" therapists that I spent thousands of dollars on, ever diagnosed me with these two: it is me, myself, who worked on myself truly hard and realized what potential issues may have caused my depression, and then severe anxiety. I was laso scared to death that I will soon die and my boy ( born 1998), will be left without me. I was so fing scared by that thought that I never really got to enjoy my son when he was small and young ,( thank dear God, I am enjoying every minute spent with him now). In all this, over the course of several years, I developed bad IBS, and carpal tunnel in both arms, which got very severe. Naturally, at some point I started believing I have a brain tumor or something else neurological. Then I started being dizzy, and my left leg starting tingling , and then I lost hearing in my left ear. That sent me to brain MRI, and that was clear. The reason for ( sometimes severe) neurological issues, was actually my menopause, through which I started going around 45, and it kept on lasting forever. Menopause can be absolutely horrible period for many women (some have it pretty easy, like my late mother for example), but nobody tells you this. When I hear that menopause is hot flashes, I want to scream, because it is so, so, so much more, and worse.
What I am trying to tell you that you probably started peri menopause and it will bring the onset of a lot of issues, that feel truly real; I could never even imagine that peri menopause and the actual menopause can be so severe. I also want to tell you that the chances of you having anything serious with your colon, after clean colonoscopy 4 years ago, are close to none. I understand you have fear from mammograms, but you go regularly, and that should give you great assurance. Try to keep yourself away from toxic news , try to be gentle on yourself. I gave up on all the therapy and all the medication - I currently use only Amitriptyline to help my IBS, and this in a very small dose. I realized at some point that nobody can help my but me. Nobody. I know it is very hard, it can be unbearable, I have gone through hell. Do not get me wrong: i still suffer from health anxiety, and in the meantime I also became severe germaphob - but I am trying every singled day not to give in to these horrible states of mind, and fears. I actually am scared of fear itself the most. Please do not hesitate to PM me if you want, and all the best to you. Do not forget : much of it is the damned perimenopause and later menopause, do not forget that.

[mlp123]

Dear,

I am very sorry you have such a hard time, and I am hoping it will get better soon. I just wanted to offer some words of hope, consolation and encouragement, from my own experience.
My anxiety started when I was about 44 years old, and I am now more than 10 years older. It started with horrible fear of colon cancer, so I had my colonoscopy then, immediately, which was all clear. However, the vicious circle continued, and I honestly have no idea how many illnesses I "had". I saw numerous doctors, I saw 7 different psychiatrists/therapists, and was on Clonopin , Zoloft and Lexapro for years. Nothing really helped, or rather, every relief was short lived. Now looking back, I believe I have suffered from severe PTSD (I came to the USA from a war ravaged country), but also very severe post partum depression. None of the "highly qualified" therapists that I spent thousands of dollars on, ever diagnosed me with these two: it is me, myself, who worked on myself truly hard and realized what potential issues may have caused my depression, and then severe anxiety. I was laso scared to death that I will soon die and my boy ( born 1998), will be left without me. I was so fing scared by that thought that I never really got to enjoy my son when he was small and young ,( thank dear God, I am enjoying every minute spent with him now). In all this, over the course of several years, I developed bad IBS, and carpal tunnel in both arms, which got very severe. Naturally, at some point I started believing I have a brain tumor or something else neurological. Then I started being dizzy, and my left leg starting tingling , and then I lost hearing in my left ear. That sent me to brain MRI, and that was clear. The reason for ( sometimes severe) neurological issues, was actually my menopause, through which I started going around 45, and it kept on lasting forever. Menopause can be absolutely horrible period for many women (some have it pretty easy, like my late mother for example), but nobody tells you this. When I hear that menopause is hot flashes, I want to scream, because it is so, so, so much more, and worse.
What I am trying to tell you that you probably started peri menopause and it will bring the onset of a lot of issues, that feel truly real; I could never even imagine that peri menopause and the actual menopause can be so severe. I also want to tell you that the chances of you having anything serious with your colon, after clean colonoscopy 4 years ago, are close to none. I understand you have fear from mammograms, but you go regularly, and that should give you great assurance. Try to keep yourself away from toxic news , try to be gentle on yourself. I gave up on all the therapy and all the medication - I currently use only Amitriptyline to help my IBS, and this in a very small dose. I realized at some point that nobody can help my but me. Nobody. I know it is very hard, it can be unbearable, I have gone through hell. Do not get me wrong: i still suffer from health anxiety, and in the meantime I also became severe germaphob - but I am trying every singled day not to give in to these horrible states of mind, and fears. I actually am scared of fear itself the most. Please do not hesitate to PM me if you want, and all the best to you. Do not forget : much of it is the damned perimenopause and later menopause, do not forget that.

Lana, thank you for your reply. I am responding in tears because I just produced the third stool sample for my retest, and it was covered in bloody mucus. I had so much anxiety about doing the test for this reason, and it has come true. My doctor said to wait until tomorrow and submit a different sample, but I feel like I can't manage my anxiety about this now, and am just a disaster emotionally.

And yes- I am also perimenopausal. My cycles have been getting shorter and shorter, and I just had a 20 day cycle. That is part of what is happening.

I relate so much to what you said about not missing time with your son. RIght now, I am totally missing out on everything with my kids as I am consumed with anxiety and health issues. It makes me so sad. Thank you again for your reply.

[Lana]

Is there a possibility that you have intestinal infection? After two horrible antibiotics given at the same time to me almost 5 years ago, I was diagnosed with Clostridium Difficile intestinal infection ( the antibiotic killed all my good flora and the bad guys took over). Bloody mucus is one of the symptoms, and pretty bad diarrhea. Of course there is a medication for this, but they have to test your stool for all these things.

[pav1984]

There are many reasons for bloody stools and mucus, however dr Google will have scared you.

You sound like you have been under a lot of stress for a long time. You really need to find a way of relaxing (I appreciate easy said than done).

I found a lot of my issues went away when I discovered what was missing in my life. Turns out a lot my anxiety was linked to that. You just need to find what is the root of your anxiety.

Find something to focus on other than your troubles. Have a escape. Find something that you enjoy and throw yourself at it.

I hope you find peace of mind soon.

[mlp123]

I appreciate the responses. I did complete the stool testing for my doctor, and despite the bloody mucus stool, the stool tests did not have evidence of fecal occult blood, so no colonoscopy at this time. The fecal occult blood is more worrisome than the tiny amount of red visible blood, which my doctor is not as worried about investigating at this time since we know I have SIBO and IBS and have had relatively recent GI testing. My anxiety and my neurological symptoms are things he wants to address first. I have a telehealth appointment with a psychiatrist tomorrow morning, and know that I will need to do something different and more aggressive with medication. This is not the path I want to take, but I feel I have no choice because I am pretty much not functioning.

The complicating factor is that I do have something actually happening neurologically, and my therapist and my doctor do not think it is purely somatic. Living in my body, I don't feel like it is purely somatic. I am semi-hopeful that it is MS, but for lots of reasons (a clear brain MRI in 2018, for example), I don't think it will be. MS is treatable, and I want to treat whatever this is and start being a wife and mom and person again. It also could definitely be vitamin and mineral deficiency related given all of my GI issues and a previous neurological episode related to B12.

In order to avoid experiencing the neurological symptoms, I have stopped moving and have been basically bed or couch bound, and lost all strength, and have somehow decided I have ALS even though it doesn't even fit. I have blurry vision and tons of sensory symptoms, which point away from ALS. I guess I picked it because it is a fatal diagnosis, and I have twitching, and I had issues swallowing when I had oral thrush and am now hyperaware of swallowing. I am reading ALS stuff online all day long. FOR HOURS. As a previous mental health professional, I know that this is such maladaptive behavior, but I am still doing it. In reality, I just feel very unwell, low appetite, nausea, stomach issues, depressed, taking a medication for SIBO that has side effects, still having the neuro symptoms- so it is "easy" to lay here with my laptop researching ALS and trying to make it fit or not fit anything I am experiencing. Sadly my kids are watching my behavior, and I hate that. And hate that I am just not being a good mom right now.

[pav1984]

A doctor once told me that a good phrase to say to yourself is "It hasnt happened yet". There are lots of things it could be but google will tell you the worst one.

While you wait for your docs to diagnose you, why dont you try and accept you have symptoms and carry on with your life and get some enjoyment out of it? For example if you get a symptom just brush it off as something that happens and then think no more of it (easy in theory I know).

You sound like you are not enjoying life which is such a shame. Worry is perfectly normal and waiting for diagnosis is always hard but please dont let worry ruin your life.

I hope you get the all clear by your docs. I think you hit on an idea with your gut issues being linked and a vitamin issue.

[emmegee]

Hi There,
A lot of what you are going through resonates with me. I have had debilitating HA at times throughout my 49 years. Single mom of 2 teens in the US and this past year has made my anxiety increase.

I have not had a significant episode in a few years, but recently started "paying attention" to little symptoms and now I fear I'm back on the HA train. I also went through both the MS episode about 8 years ago and the ALS episode about three years ago. I also experience weight loss during my episodes. Survive via lots of therapy, work to keep me busy...

One thing that helped from my therapist was trying to think of three possibilities whenever I catastrophized to the worst-possible outcome. For example, right now my asthma has been acting up. My mind immediately goes to lung cancer, or congestive heart failure or something terrible. What I should be including in my thoughts is that maybe I am just experiencing normal allergies right now.

I try to force myself to keep busy, go for a walk, seek out friends to talk to. I have relied on meds throughout my life too and glad they are there if I need them.

[mlp123]

I am posting again, just so I post here and don't end up posting on the ALS Forum in the "could this be ALS" section. My thought process is so strange, and my behaviors are so maladaptive. So I have these neurological symptoms, and they include twitching- twitching is one of MANY neurological symptoms that I am having, so my brain attached to ALS, and won't let go. As I mentioned above, my symptoms are really more in line with MS or B12 deficiency, and I have lab testing that supports previous B12 deficiency. What is confusing is that the symptoms returned in spite of being treated with very regular B12 injections, which calls the whole thing into question diagnostically.

Being undiagnosed is terrible, and I really am totally at peace with the chance I have MS. It is treatable. But I have irrationally attached onto the possibility of ALS, I guess because it is probably the worst possible diagnosis neurologically, plus I have the twitching, plus I have issues swallowing (which could be explained by GERD and recent oral thrush, and it is really just feeling like swallowing large pills is difficult, or small amounts of food remaining in my throat- and of course, all amplified because I am anxious and hyperaware).

My symptoms are sensory- I have tons of tingling, etc. Sensory symptoms point AWAY from ALS.
My twitching is all over- my eyelid, my foot, my arm, my stomach , my back, everywhere. And it has decreased in frequency. It is anxiety, electrolytes, Benign Fasciculation Syndrome.
Brain fog, blurry vision- these are not ALS symptoms.
My left non-dominant arm seems slightly smaller- this is normal. Also, I have been basically bedbound for three months. I have lost so much strength and stamina as a result, which is to be expected.
My left arm feels strange, my left hand feels clumsier. Who knows if this is true, or if I am just hyperaware of it. My perceived arm weakness might relate to ALS, but I can still do everything, there is no "failing". Actions with my left hand just feel awkward.
Exercise exacerbates the neurological symptoms in my legs. This is not ALS- probably I could not be exercising with ALS.
ALS is not episodic. This is my third flare/ episode- this is MS or a vitamin deficiency, or something.

Anyway, I could go on and on. I am just looking at myself and my thoughts and find it so strange that I can be so irrational and panicked about something that I can also recognize is highly unlikely. My symptoms fit MS and I am accepting of MS, but I have to move past that to try to believe something worse? And try to make my symptoms fit ALS when they don't? I keep walking on my heels and toes to check that I can. I look at my arms in the mirror. I do various strength testing, lift small weights, to see if I can. Keep reading the ALS forum. If I move away from ALS, or feel a respite from focusing on my symptoms, I focus on different symptoms- I have calf pain that is obviously bone cancer. I have SIBO and IBS, but I decide it is stomach or colon cancer. I am just angry with myself that I can't get this under control, especially when part of me can "see" what I am thinking and doing doesn't make sense.

Thank you for reading all of this. Not looking for answers or reassuring, just trying to type something out to reinforce it to myself.