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tsh61 08-08-2018 05:20 AM

ALS Question
I am a 57 year old female currently suffering from extreme fatigue, weakness in my legs, ankles, hands. I was recently diagnosed with high blood pressure and prescribed losartin with a water pill (together). I was in the hospital in April of 2018 due to shortness of breath, fluid retention and high blood pressure. I can barely walk for prolonged periods of time without numbness in my left foot that extends to my knee. Breathing is still difficult when I inhale. I do have pain in my body, joint pain, deep tissue pain. The pain is constant but moderate and uncomfortable all the time.

My cardiologist did an angiogram because I had an abnormal ekg on arriving at the hospital in April. No clogged arteries and he did an echo-cardiogram which appeared to be normal. He also did a carotid artery test showing high blood pressure. He suggested that i return to my family doctor because he feel, although my heart is functioning properly based on his tests, that we are missing something. I returned to my doctor and he wants me to walk everyday for two weeks to see if we can increase my level of activity because I am sure he thinks all of this is because I am terribly out of shape. I get very sick, physically when I attempt to do any physical activity for a prolonged period of time. I can do basic physical activity, such as shower, cook a meal, walk short distances very slowly, but within a short period of time my legs and body do not want to move, they become weak and I am not sure how to explain this but I have to actually focus to get them moving. It is hard to explain these weird symptoms. I also have a weird feeling in my neck and pressure in my head with headache and feeling faint at times like I am just not getting enough oxygen to my brain.

I am a person that researches everything, so of course I have googled all my symptoms, which is not always a good thing. From sleep deprivation, diet & exercise, etc. I have changed my diet for the most part, doing what my doctors are telling me and no improvement, in fact the symptoms are the same and progressively getting worse, but not rapidly. Then I wonder can this all be in my head and stress related because the general testing has all come back normal. Oh I did have a CAT scan of my chest at the beginning of the year because I was having repetitive bronchitis so saw a pulmonologist and ran testing for COPD and asthma/allergies, with the findings being mild asthma and allergies, which that i already was aware of and placed on a steroid inhaler which as not helped any of the symptoms.

Where do I go from here, my job will be starting in a couple weeks and I have had to deal with this for several months only to be slowly declining. So where do I go from here? I try not to over emphasize my symptoms to my doctor, I dont want to sound like a hyperchondriac or just a whiner, but how can I get them to understand I am really sick and I just want to feel better and have some real answers. I feel like we have been treating symptoms without really knowing the cause.

Are these early symptoms of ALS or would this disease have already manifested to a more severe level that the doctors would know without a doubt?

MSNik 08-08-2018 12:36 PM

Re: ALS Question
These are not symptoms of ALS and you need to stop using Dr Google and listen to your doctors....all of your symptoms can be explained by stress and if your doctor does not feel you are getting enough exercise and has prescribed walking two miles a day, you need to do it. You will find it gets easier the more often you do it. Take a friend with you and have a gab session OR put in some headphones and enjoy some music....listen to an audible book..but find a way to get moving and stay motivated! If you really do not think you can do it on your own, join a gym which has treadmills and watch TV while you are walking...just make sure you move your body!

ALS has very specific symptoms and you aren't describing them...moreso, if your doctor or the hospital even thought for a minute that this was worth investigating, they would have run the tests. ALS has a test.

I know you are overwhelmed and probably alittle scared...but you have to get yourself in the right mindset and make up your mind to listen to your doctor and make improvements to your body. Your head will follow and you will start to feel better!

Good luck!

tsh61 08-08-2018 01:11 PM

Re: ALS Question
I have done everything the doctor has asked me to do. I have always listened to my doctor and followed his orders. He did not ask me to walk two miles a day because at this point my legs would not even be able to do that. He asked me not to worry about distance or speed, My doctor told me to start at 10 minutes a day and increase a couple minutes a day for two weeks, I have a follow-up in two weeks and if there has not been significant improvement my doctor said we will investigate other avenues to find out what is possibly causing the muscle weakness. I assumed ALS symptoms progressed more rapidly and like I said if by now over the last couple of months it would have been a lot more evident. So what you are saying is the symptoms associated with ALS that are listed on the ALS Association web page is incorrect. Where can you find accurate information about the disease? Being an educator and a person who is very aware of how to recognize valid research has found that muscle weakness & fatigue are two characteristics of ALS, but these symptoms can be related to a myriad of illnesses. I was very active up until the last April, worked (taught school) full time and am completing my second Masters in two weeks, so I normally am able to handle a lot of stress and if this be all stress related, which my doctor and I have discussed, would be extremely awesome. But unfortunately my cardiologists feels that we may be dealing with something else. But at this time not sure what is going on. Inf act every symptom anyone ever has can be explained by stress.

WhatAreTheOdds 02-27-2019 09:24 PM

Re: ALS Question
My mother had ALS. It started in her hand. Her left hand fingers folded in like a first. She could not open her gas tank on her car or undo her bra, etc.... ALS generally starts in one area of the body, then becomes apparent in another part. Meaning it can start in upper limbs or lower limbs, or problems with speech. Her muscles wasted away rapidly with the weakness. Your symptoms do not sound like ALS.

Your symptoms may be neurological (I have Multiple Sclerosis). Unfortunately, there is no definitive test for MS. It can take months/years or happen quickly depending on the symptoms. I would ask your doctor to consider a neurological condition, if they havenít. It is at least worth exploration.

I really donít believe itís ALS. Remember it is a pretty rare disease. Be your own advocate. You know your body. If you feel like your not being heard, try a different doctor. Keeping a journal of your symptoms and how long they last will help you have these conversations.

Good luck

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