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Als or anxiety or something else .. scared momma

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Katmccoy85

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Hello my name is Katrina I am a 34 year old mother of three and soon to be grandma..

first off I’ll start by saying I have had anxiety my whole life nothing to seriously crazy ... I have had breathing issues since I was a small child although I don’t use an inhaler often..

my problems started about 6 months ago I should also mention I am a former smoker but only smoked for about 7 years total off and on.. it all started with increased difficulty breathing which all my long xrays and even a pulmonary test was normal. Then I bagan having difficultly swallowing solids only and that is still accruing to this day liquids no problems at all.

Then I got the biggest scare and I will admit I am terrified we went on a camping trip and I got cold so I slept in my truck in a crazy position I am sure .. two days upon returning home my right leg became very weak and then my stupid self googled it and found als now I don’t know if it’s my mind or what I have no idea but now for two weeks I get these painless twitches from right above my knee all the way down to my calf they happen on the inside and the outside and my leg feels weak as well as muscles burning sometimes like I went and did a crazy work out which I did not.. then about a week ago I started getting twitches everywhere just not as much as in my right leg .. my arms feel heavy and I get the burning muscle pain. I am honestly terrified..

I have an appointment for another pulmonary work up on Thursday as well as a sleep study and a neuro appt on the 6th If June .. I saw the chiropractor today as well .. besides the swallowing all the body symptoms started happening two weeks ago is it possible for als to progress that fast ..

also had a clean mri .. my blood work was normal except for a slightly elevated inflammation in my body that is non specific. I will also state that I am 5 8 and over weight I am 240 pounds but prior to now I was 300. I have Avery large chest and would like to get a reduction but I won’t until I know what is going going on with me. Also I lost my mother in law in November to a brain aneurism and since then I don’t get drunk but probably have had 2 beers a day on most days.. I also have mild dull lower back pain but honestly what is freaking me out is the twitching in one leg for weeks and the weakness I have not noticed a difference in muscle bulk or size .. any insight would be helpful I am truly honestly terrified
 
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lgelb

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First, sorry for the loss of your MIL and kudos on your weight loss and leaving smoking behind.

Even if ALS progressed that fast, it doesn't progress like that, to answer your question.

As you know, weight loss can affect nutrition, depression can affect aches and pains, and even beer, let alone the above, can affect breathing.

So I'm glad you're following up with a sleep study, etc. since weight is a risk factor in sleep apnea, and since your PFTs were good, you don't need to worry about any relationship between your breathing and ALS.

Twitches and feelings of weakness don't count toward ALS, either. So all in all, you may well find multiple things to work on, and maybe reason to start using a CPAP with the sleep study, but you're in the wrong place here, which is great news.

Given your history, I would also be cautious about chiro care at this point.

All the best,
Laurie
 

Katmccoy85

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Thank you I have never seen a chiropractor until today what issues can a chiropractor cause if you don’t mind my asking
 

KarenNWendyn

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Katrina, please read this if you haven’t already done so: Important - READ BEFORE POSTING! Answers to common concerns about possible symptoms!

Your symptoms do not suggest ALS. In particular, the bulk of the symptoms coming on over two weeks and leg suddenly becoming weak over two days definitely is not consistent with ALS.

If you had ALS with trouble breathing, your pulmonary tests would not be normal.
Trouble swallowing solids could be anything.
Twitching — read the sticky. Twitching is common, nonspecific, and meaningless.
Arms “feel” heavy with burning muscle pain. ALS doesn’t feel or have burning muscle pain.

You have chronic health issues with your weight, smoking history, and alcohol use. Also severe anxiety. This will all affect how you feel. The sleep study is a great idea. A program of healthier eating habits, staying off cigarettes, adequate water intake, regular moderate exercise, and only occasional use of alcohol will do wonders for your overall well-being.

Did your primary care physician check your muscle strength?

Assuming your strength is normal and you can still do everything you could do 6 months ago, ALS is not a consideration. I’m sure the neurologist will reassure you.
 

lgelb

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The short story on chiros and naturopaths is there is a greater percentage of quackery and incompetence (as judged by if what they do or fail to do makes problems better or worse) than in other fields, based on the teachings and history of those fields. I'm not snarking at the good eggs, but there are a lot of bad apples and when you're in pain and scared, you might not be checking references, publications and résumés.

There is a classic scam where chiros read X-rays and diagnose all manner of things in order to justify manipulation of the spine, which can itself cause and worsen nerve damage.

So given that you feel your condition is unstable, that's not where I'd be hanging my hat.
 

Katmccoy85

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<quoted text removed>

Thank you for your reply .. no but the er doctor did a simple strength test he did say my right leg was a bit weaker than the left but that that might be due to me being left handed .. I have literally Terrified myself and my thoughts and prayers go out to anyone suffering from als I have convinced myself I have this disease and I pray I really don’t. My nephew suffers from duchennes muscular dystrophy hereditary on his mothers side and I just wish there was a cure for these illnesses .. I will update my progress my last pulmonary test was in August so hopefully the one this month proved the same .. thank you all
 
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Katmccoy85

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I thank you all for your replies, I am looking forward to the additional testing. Would like to figure out what this is. My breathing has become more difficult and by shortness of breath what i mean is my oxygen level is normal it just feels like i have to work harder to breathe and when i lay down my oxygen level drops. My recent blood work just showed that i have low lymphocytes whatever that means, and the muscle weakness that is rapidly spreading. I just feel completely exhausted. I have not been sick but I am wondering if I have developed some sort of illness that is being over looked.
 

KarenNWendyn

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I am wondering if I have developed some sort of illness that is being over looked.
That’s certainly possible. You mentioned you were seen by an ER physician but apparently not by an internist or family practitioner? A good general exam by either would be a suggested next step (as well as to continue working with the pulmonary doctor).

Anyway, ALS would not cause the symptoms you report, or the low lymphocytes.
 

Katmccoy85

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I do just want to add a couple more things as I was kind of scattered brained last night and then I will leave this site but will post an update. My symptoms started as breathing difficulty but hard to explain i am getting enough air but it feels that breathing is un natural and I have to work harder to do so. Than swallowing solids became difficult and it doesnt get better it has gotten a bit worse. I have weakness in my right leg with almost constant twitching and I also have sporadic twitching throughout my whole body, the twitching began just days after the weakness began and has not sub sided. I have had a brain MRI which was clean and an ANA test which was clear as well, I have had some minor abnormalities in blood work that nobody is concerned with. I also experience mild headaches and extreme fatigue, my eyes feel dry often as well. Could this be anything other than als? I also have some mild blurry vision. I previously stated that I am getting a burning sensation in my muscles but that is only when I am using them and they tire easily. it seems most of weakness is in my right leg and right arm also with some neck stiffness. I will admit I am absolutely terrified and it seems my symptoms worsen daily.
 

codyclan

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It could be lots of things other than ALS. Seriously, none of your symptoms sound like ALS. Dry eyes, blurry vision and headaches-nope, not ALS. I could say that I have trouble swallowing some foods and breathing sometimes feels more difficult. I have GERD and mild asthma, not ALS.

Clearly there is something going on and you need to work with the docs to get to the bottom of it, but you really are not describing ALS. Please work with your docs but do yourself a favor and stop googling ALS symptoms. Post after your neuro appt on the 6th but there’s nothing we can do for you till then.
All the best,
Tracy
 
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Katmccoy85

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I have seen my pcp many times but was mostly for breathing and swapping issues .. I did just have a oft and sleep study I am waiting for those results . But in the meantime my symptoms continue .. I still have swallowing solids issue , intermittent breathing difficult but with normal pulse ox and now the weakness and heaviness is in my whole right arm. I am not sleeping well at night and having some right hand difficulty mostly just doesn’t feel strong.. it is crazy how fast all these symptoms started .. originally breathing and swallowing and now the whole right side of my body feels weak and heavy and wide spread muscle twitching .. the twitching had lightening in my leg.. however I can still do most things just seem to tire very easily .. I hate worrying about this yet it seems that even if not als it has to be a neurological issue if the whole right side of my body is affected along with swallowing issues right ? Ugh I’m sorry to be a bother but it seriously seems like everyday something new happens
 

lgelb

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Assuming you mean PFTs (you already said those were normal?) and a sleep study, the results should help narrow down the possibilities. It's always worth looking at your bed positioning/surface and chair(s) with fresh eyes when you have an arm that goes wonky.

But I don't think we're in a position to narrow down the possibilities here, other than to say that we still don't think you have ALS. So we are chasing our tails here until you have results or the neuro appointment to report.
 

Katmccoy85

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Thank you for replying to my pft was normal but that was almost a year ago I just had another one should have results sometimes this week. I gues all I can do is wait to see if that shows any changes. Thank you so much for listening
 

Katmccoy85

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Hello Everyone, I am sorry to be bothering with another thread, IT is frustrating to look information up online because there are so many variants on ALS or other Neuro diseases.

A little back story I have been having shortness of breath for a year and I had a PFT done back in June 2018 which came back normal which is great. Around September 2018 I started having an issue swallowing solids only it is hard to explain but it started with an issue initiating a swallow and now feels like things get stuck or that food is moving to slow through my esophagus, About one month ago I developed a weakness in my Right leg and two days after the weakness began I began experiencing twitching in that leg and it would accur for most of the day. I am still experiencing the twitching but it seems the weakness has gotten a little better but I constantly feel twitching and now I am having twitching occasionally throughout my body including my stomach and throat but it is most prominent in the right leg.

I did have a barium swallow done and that just showed that there was a mild prominence of the cricopharyngeal muscle but other than that showed normal, I also went to a Gastroenterologist who tried me on acid reflux meds which did not work so I have since stopped those pills and I just had an upper endoscopy done on May 31 and he also did a widening of the esophagus at that time and I just received a call from him about the biopsies he took which are normal, He did some labs including an ANA test the ANA test came back negative but my C reactive Protein came back high.

I was told under 8 is normal and mine was 16.8. I also saw a Neurologist she did not do an EMG but I have normal reflexes and a normal gait and she did not notice any muscle atrophy or clinical weakness. I am over weight I am 5 foot 8 and I weight 250. The only other health concern that I have that is new is my gynocologist states that I have a very thick endometrial strip and I have an appointment to discuss a hysterectomy.

I guess my fear is that I am still experiencing the twitching and the swallowing problem and I have read that it is possible that an elevated C reactive protein can mean nerodegeneration. I am 34 years old mother of three and soon to be grandma. I am an ex smoker and I do drink occasionally. I also had another PFT done in early May 2019 and that also came back normal. I have been told my twitching in the leg can be a pinched nerve but I doubt that can cause the swallowing issue and I find it strange that I can be having the limb symtoms along with the swallowing issues. I am super worried and this is causing alot of stress in my life. I have been to the hospital three times in a 30 day period.

My neuro doc referred me to physical therapy and wants to see me back in three too six months sooner if my symptoms worsen. I really dont know what to think anymore I just try and ignore the way I feel but it is difficult to do so and I find myself falling into depression. I have a hard time even going to work and I work as a counselor.

Everyone says that ALS is very rare but I am reading it is the most common neurodegenerative disease in the US. I am going to also see a cardiologist due to sporadic rises in blood pressure i have been in an ambulance twice with BP 149/105 and a heart rate in the 140s the only mild heart issue I have is very mild left ventricular hypertrophy. I am having a hard time wrapping my head around all of these symtoms and I guess I am wondering does this sound like ALS and if not does anyone have any insight as to what could be going on. I have always been a well grounded person and I have a hard time thinking all of this could be a constant state of anxiety cause that would literally mean I am in a constant state of anxiety, especially with an elevated C reactive protein.

Please help any advice would be appreciated I am kind of at a loss. I have also had a brain MRI that came back normal.
 
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