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Krfbmk

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Joined
Sep 18, 2016
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Learn about ALS
Country
CA
State
Ontario
City
Ottawa
Hey forum..

38 year old male here from Canada..
I have been struggling with some not so nice symptoms since February 15, 2016. I will try my best not do give you an extremely long story, as I have noticed when people reach out for help it sometimes can lead to writing a novel, and I don't want to lose anyone because of an overly long post.

One morning I woke, and went to take a shower, and all of a sudden I was having a standing balance issue. Not dizzy, just unsteady. This has NEVER gone away, and it's with me all day. I have been to a few hospitals and they all told me it was either vertigo or anxiety. After seeing my fam doctor she referred me to a neurologist, and I have also seen a internalist doctor. The neuro was a joke and didn't even properly asses me. He started sending me for sleep studies, and after doing a few of them, it turned out that he actually attached my name to the wrong file, and I was doing tests that weren't even related to my symptoms. I asked to see a second neurologist and he told me from my symptoms that I explained to him it sounded like it could be stiff man's disease and or early onset of Parkinson's, but he didn't want to commit to an actual diagnoses, and said that the stiff mans disease would be one in a million. I had to debate with the neuro to even get an EMG, which is next week. It just feels like everyone is sweeping this under the rug and nobody is taking me too seriously. I don't do drugs, drink, and or smoke. I am straight edged and know when something is wrong with my body, and I'm in trouble.

Anyway, my symptoms are as follows, postural instability, but my walking is fine, although sometimes my leg on the left side gives out. Pins and needles down my legs, and sometimes in my face. Super cold feet, and sometimes hands. Still have strength, but I am also developing a small tremor throughout my whole body in both my hands and legs, but only when I make movements. I'm dropping things a lot, and becoming very clumsy. Cognitively I've taken a hit too, and I scramble for words, and sometimes get confused real easy. I have extreme stiffness in my shoulders (neck & shoulders) like a coat hanger, and sore joints in my elbows, and hip. I also get mucsle twitches through my body, and sometimes they hurt too. I have had MRI's in February, March, June, all for my head, neck, and spine, everything came back clear, but they did find some mild arthritis in my C7 spine, but they said this is normal, and in my lumbar spine they found a minor disc bulge and a small annular tear, but they said that these things would not be causing my symptoms. I have had tons of blood work, and no signs of infection, and no diabetes, my b12 levels were good also, and no thyroid issues. Even as I type this I am feeling a weird sensation, almost like I know I am typing, but it kind of feels like my hands aren't my own. I also have tinnitus, sometimes blurred vision that comes and goes, and now blood pressure problems as well 155/101, and honestly it just feels like my body is attacking myself, and my brain is frying. Sometimes my legs also feel very heavy.

I have no wife or kids, and not a lot of friends, and I feel like I am at the edge of my mental health, and the fact that this has been going on for over 8 months with no diagnoses, I'm getting scared now that I am slowly passing away. I have spent thousands of dollars on eye tests, chiropractors, acupuncture, physio, and no relief.

Anyway, the reason I'm here on this forum is because my internalist found in my blood work that my CK levels was high, like at 1300 compared to the normal 180. After a few more tests and plenty of water, my levels have gone back down to 189. My family doctor told me that she was worried about ALS, but after the CK level went down, she wasn't as worried. I do have an EMG test coming up on October the 4th. Is there anything I should know? Any good questions to ask? If I have an abnormal test, does this mean I have ALS? If I have an abnormal test should I then ask for a nerve study? What will a nerve study test show? I try not to google my symptoms as it only ads to my anxiety, but according to google it seems like a neurological issue, either MS, ALS, or Parkinson's.

I am isolating myself, and I'm more worried about becoming so sick, that I won't even be aware that I am sick..If that even makes any sense. I own a home and am now on LTD, but my finances are running out, and so is my energy.

And you know what? I wrote a novel..
Sorry

Please help... :(
 
You have my symptoms that sound nothing like ALS. Your EMB is right around the corner, and it can rule ALS out. No, you won't need any other tests if it clears you.

Some of your symptoms can by explained by the stress you are feeling, so please try to relax so that you can seperate anxiety issues from other problems.

Also, stop isolating yourself!!

Becky
 
If your gp based her fears of ALS on that 1300 CPK that says to me she knows little of ALS. Your symptoms while distressing don't sound much like it anyway.

There are many things that show in an emg and most abnormalities are not ALS. There is a specific pattern that is seen in ALS. Even then there are often other things to be excluded before any diagnosis. And there are emg abnormalities that are distinctly not ALS

You will likely have a nerve conduction study as part of the emg. They are usually done together. If your ncs is abnormal it points to something other than ALS. Do not fall into the trap of reading your report and seeing something abnormal and assuming it is the emg part, and further that it is ALS. We have a lot of people who post their " abnormal emg" results and it is clearly the Ncs

What you need to ask if you do not already know is when and how you get results. If your neuro does the emg I expect you will get a preliminary report immediately. If it is another doctor you may not as they would send your doctor the results. If you have a patient portal be wary of viewing results you may not understand.

Good luck
 
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This set of symptoms somehow fascinates me, so I want to address your questions and concerns.


Also, I’m not a doctor, so I normally don’t offer a diagnosis. Anybody who suggests a diagnosis over the internet is foolish. But I know ALS fairly well. You did not describe ALS at all.


Your specialists have not diagnosed you. That’s most likely because your problem is outside their specialty. I think your neuro relented, giving you the EMG, only to keep you happy. He knew your problem wouldn’t show up on an EMG.


I would tell you to cancel the EMG, but I know you’re too worried to do so. EMGs look for lots of things. A “bad” EMG could mean a lot of things. It’s only one part of the equation.


Your doctors are not taking you seriously because you are not paying attention to them. They know what they are doing.


Here’s a list symptoms that I’m sure you’ll agree have absolutely nothing to do with new onset ALS. Tinnitus, blurred vision, blood pressure, Pins and needles, cold feet, and sometimes hands, Cognitively…scramble for words, sometimes get confused, weird sensation…feels like my hands aren't my own.


The doctor you need is a GP medical doctor. A family doctor or Internal Medicine doctor. They are trained and experienced to lead a health investigation into whatever specialty is called for.


You might think that clumsiness, dropping things, and leg giving out are ALS symptoms. They are symptoms of many other things, too. Don’t jump right to a rare fatal disease.



Your legs feel heavy. That’s a sensory issue. ALS is not a sensory disease.


Twitching is common to many problems. So common, they don’t mean anything in my view.

OK, so what’s left?


brain is frying, energy running out, isolating yourself, “scared now that I am slowly passing away.”


Those might be physical or mental issues. I suggest seeing a doctor who is an expert in both the mind and the body: a psychiatrist. (Not a psychologist.) The psychiatrist went to med school and became a physical doctor before getting into the psych stuff, so they know how one affects the other.

“spent thousands of dollars on eye tests, chiropractors, acupuncture, physio, and no relief.”


Not surprised. Don’t see anymore “alternative” medicine people unless a medical doctor orders you to get a specific treatment from one. These people should not be allowed to call themselves doctors.

Why are you on LTD? What is keeping you from working?
 
Hi Atsugi,

I appreciate you taking your time in responding to my post. I was in the mental health related field for quite sometime, and I am well versed and educated in mental health related symptoms. I took time off because I decided to deal with a few things that I kind of avoided, mostly from my past when I was a kid. So I am already seeking treatment for this. I was actually in a pretty good place up until the day all of these symptoms started. Let me be clear, and in no way do i mean to come across rude or disrespectful, especially when someone as yourself is kind hearted enough to take interest in my story.. But these symptoms are causing my anxiety/depression.. Not the other way around.

My mind isn't broken and I'm still able to function for the most part, and someone with severe and debilitating mental health issues aren't usually so invested in getting better, and or aren't taking care of themselves properly.

When I say that I feel like I am fading away, it because I feel like my body is attacking itself. And when I say that my brain is frying, it's because the tinnitus in my ears feels like its literally frying my brain. The isolation part is more my pride not wanting to let me people see me with any symptoms.

I know how it looks, but even when or if I have taken anxiety meds which doctors at the hospitals have given me, I still feel the pain, pins and needles, balance issues. I even went to see a specialist that tests for vertigo and he put infrared goggles on my face and tried every which way to provoke vertigo symptoms, and nothing. He them did some postural tests and after giving me a Romberg test, I failed this test miserably. He said that he was going to send a report back to my family doc, but in he seemed to think the issues was either coming from the cerebellum and or spine. Neuro docs have given cerebellum tests and there didn't seem to e any issue.

Let me give you a few of examples.. One time in the middle of the night I got up to go to the washroom, I fell right on my rear end, and hard,for no reason. I didn't wake up with anxiety, and when I wake up, I usually feel rested, not stressed, And or not filled with anxiety.

Anytime I go to the washroom, when I pull my underwear's down with hy hands, by hands tremble with that action until i release them. Basically anything that involves any type of strength of gripping, creates this vibrating sensation, but it does come, and go, but it's there more often than not.

I have hopes and dreams, and believe me when I tell you, I could think of a million better things to do with my time than hang around hospitals and or doctors. To me, and from my experiences this doesn't sound like a typical person with depression. I have anxiety yes, damn right, but it's been brought on by these symptoms, and because they are not going away.

I would love to get back to work in some compacity but I can't stand properly, and it wears me down mentally speaking, like I'm just exhausted because it actually takes serious effort to not wobble. It seems to be coming from my hip/spine.

I've thought of many things.. When I was younger I had problems with sleep. A doctor in my teens prescribes Seroquel, and it is an anti psychotic med, I told the doctor that I didn't have mental health and he told me that there was studies done and that seroquels side effect helps dramatically with sleep, and he was right. I've taken it ever since, but at a small dose, usually 50mg.. So from investigating any meds I am taking Seroquel does block dopamine which can effect both muscles and nerves. A psychiatrist squashed this theory by saying that the does is way too low to have that kind of affect as he would consider if I was on higher diesels such as 300mg and up. I've even considered Lyme disease, but then again, I'm at the mercy of a doctor in the US, and Canadian health care doesn't have the proper testing for Lyme, and they don't even recognize it as something that can even happen down here.

After reading your symptoms, you're right, it does not sound like traditional ALS. But it does sound like MS, or Parkinson's. I think what really put me in a bad frame of mind was that my family doc wanted me to complete that EMG test to rule out ALS. She kept talking about ALS.

Anyway, in going through all of this, I have a very strong new found respect for people of all ages that are struggling with this horrible disease, and for anyone who does have ALS I take my hat off to them and respect them for the strength that they must have to face it. I also pray that they have loved ones to take care and or help them during this disease.

The last time I got an MRI of my head was in February. We are in October now, do you think maybe considering that I feel like my symptoms are worse now, that a follow up MRI of the head would be out of the question?
I appreciate your advice.

Talk soon
 
So sorry you are suffering so much.

The great news, after carefully reading your posts is that ALS just is NOT on your radar. I wish you all the best working with your doctors to find and solve what is going on.
 
Well, Krfbmk, I considered what you wrote and several things came to mind, but I'm no doctor so I won't pretend to know what I'm talking about. I agree with you, this does not seem to be "all in your head."

Like the others who responded here, I/we know ALS pretty well. Better than some (most?) doctors. You've really attracted answers on this thread from some really very knowledgeable people.

There's no ALS there. Your symptoms are important. They're real. They're just not ALS.
I can't comment on whether you should get another MRI. Ask the doc.

I wish you good fortune, but you'll have to find it elsewhere. Good luck.
 
Thanks for your quick response Becky. The fact that you took some time out to respond to my post, means more to me than you will know.

I have a cat, so for now, he keeps me social :)

I will work on the people thing after this EMG test. I hope that you're doing ok though.
 
Hi,

Let me put your mind at ease about the Romberg Test. Years ago, I was dx with Meniere's. I had terrible vertigo attacks, fullness, ringing, and my balance was off. Before I was dx they put me through all kinds of tests thinking I had benign positional vertigo (those eyeglasses and repositioning you in every imaginable way) but they could not find anything. I ended up going to University of Pittsburgh Balance Center and received more sophisticated testing. It showed that I had vestibular nerve damage, cervical vertigo from a car accident, and migraine associated vertigo (I never connected the migraines to vertigo). Failing the Romberg test can mean too many things to list. In fact, some normals fail it because they may have never done anything to help themselves become adept at balancing. So, I still don't know if Meniere's is part of my dizziness causes but look at all the other things they discovered that contributed to my dizziness and balance issues.

I read your post very carefully and I don't see anything that would lead me to believe you have ALS. I'm assuming you got an MRI of your neck, right? Forget doing another one on your brain, there's nothing to show. Your brain has been cleared regarding anything that would show up on an MRI.
 
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