My symptoms

[Guest]

Hello everyone.

I'm 35 male.

6 feet.

150 lbs

Had always considered myself the model of perfect health. Never smoked, never drank. And vegetarian for 15 years.

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I have had symptoms for almost 2 years now, have had some tests but no dianosis of anything. I had never thought of ALS until 4 days ago. I hope someone can offer some opinions as to what I might and might not have.

2 years ago. list of symptoms in order as they occured (more or less).

severe itching on legs - lasted 2 or 3 months. Still itch occassionally

slight tingling in left foot big toe, and in thumb of left hand lasted 3 weeks.

dermographism - lasted a year - still have slight dermographism

stiffness and slight pain in neck and shoulders - lasted off an on for a little over a year

dull pain on the left side of my chest. lasted for 6 months. disappeared. and has come back only a few times and lasted only a few days.

skin is very sensitive. it someone pats me on the back. it hurts. when I dry my hands with a paper towel, it hurts. started about 3 months in and still experience it up to today.

stiff calf muscles - happened on occassion first year. happens once every 1 or 2 months now

general pain / stiffness after letting go of holding an object, like a steering wheel. Or after carrying in a bag of groceries. Or after sitting for more than 10 minutes

stiff hands upon waking up - first 4 months - doesnt happen much any more

the feeling of weak legs. Sometimes when I stand, I feel like my legs can barely hold me.
started within first 3 months, and happens frequently to date.

arms feel week on occassion as well.

arms tingle, feet tingle, legs tingle, head tingles, almost on a daily basis. comes and goes. can be moderately severe for 3 hours, then disappear for 8 hours. started about
5 months after first symptoms.

muscle twitches in calves and arms. twitches are about the size of a nickel and are visible. Has never been severe, but definitely noticable and annoying. usually lasts half a day to a day. maybe twice or 3 times a week. symptoms started about a year ago.

some ringing in my right ear. 3 times a week. symptoms started over a year ago.

when I wake up in the morning, and sometimes during the day, my body, especially my legs, feel like they are buzzing.

I have basically gone the last 2 years with some sort of symptom everyday. Maybe I will go 2 or 3 days ..and feel really good. Then a week long period comes, where I have alot of these symptoms.

One of the last things that happened to me and now I'm trying to tie it into ALS is...

I was doing a semi-strenuous sport a few months ago. But nothing I hadnt done for years, and happened to look down at my forearm ..and there was a huge knot/ball. It looked like a golf ball under my skin. I went to the doc the next day ..and he said I probably tore some muscle and broke some vessels. It has since gone back to normal, looks wise. But now I have frequent pulses of pain in that arm, and my other arm. And my wrists now seem to have some weekness and occassional throbing pain. And over all
my arms feel weaker than usual.

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medical test history

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after about the first 4 months of symptoms started, I went straight to mayo clinic in arizona, convinced I either had lupus or MS. I made the rounds. MRI on head and Neck. Tons of blood tests. All the doctors basically laughed me out of the hospital saying it was just stress.

That was a year and a half ago and I continue to feel bad virtually every day.

The last doctor I saw was a rheumatologist. He put me through a few physical tests and tons of blood work. The only thing he found from the test is ..he said they showed I had some slight muscle inflammation. He didnt seem too concerned but knew I was.. and offered to refer me to a clinic in houston. I havent since gone for lack of funds.

One other thing that has always stuck in my mind is ..the neurologist as mayo said my reflexes were a little brisk ..thereby ordering an MRI ..but he also stated that ...both sides were equally brisk ....and said that it's possible i've just always had brisk reflexes ..and that some people do.

Thanks for reading and forgive any spelling errors.

Any ideas?

Thanks,

Brady

 

[Guest]

I would recommend going to a neuro specialist, although I did know a lady who had a knot in her skin and she ended up having Rheumatoid Arthritis. I am sure your Rheumy ran an RA factor? Do you have your paper work as to what tests he ran? There is also a form of RA that effects the muscle's and is called Berchets (sp). And also, Inflammatory myopthy. As for skin irritation, do you have redness? A good friend of mine was just recently diagnosed with a skin myopothy. (dermomyostosis, sp?) It is in the skin but can effect your muscle and it did for her. Just throwing out some possibilities. And, it would not hurt to repeat some of the tests and get mri's.

Good luck with everything,

april

 

[Guest]

Thank you so much for your quick response. I am most certain the Rheumy ran an RA factor. I do have the paper work, but not with me. Thank you for mentioning other possibilities. I will look into those. As far as the symptoms I listed, do they ring any bells as far as ALS is concerned?

Thanks again

Brady

 

[Guest]

Based on what I just read , I would say you do NOT have ALS ! No , I am not a doctor , I am just a PALS with an opinion.

- with ALS , the weakness only gets worse , no days off.

- very little pain associated with ALS directly.
Indirectly , falling down is a ***** for aches and pains and pulled muscles.

I can not say what you have , other than those are some nasty symptoms. The twitches are just twitches , there are hundreds of reasons for them .

Be at ease Brady , you dont have ALS.

With patience, I hope that the docs get you figured out. Good Luck.

Glen

 

[Guest]

Agreed Brady. I'm no doc and don't have ALS, but sounds like something else and most likely treatable. Rest easy and keep pursuing something with a neuromuscular specialist.

 

[Guest]

Glen and ktmj, thank you so much for your replies!

I respect your words and ideas very much. And will take them all into account.

Also if anyone else is reading this post, and you have any other ideas, similar experiences, or opinions as to whether I should pursue ALS avenues, your responses would be appreciated.

Thanks

Brady.

 

[Guest]

Doesn't sound the least bit like ALS to me, but I'm no doc. I agree with April. Also, your symptoms sound a bit like Fibromyalgia or a connective tissue problem.

 

[Guest]

Many of your symptoms are sensory related (itching, pain, tingling, etc). ALS effects motor neurons, not sensory neurons. MS, on the other hand, does effect both motor and sensory nerves.

I'm not a doc, just a guy with a differential diagnosed of PLS but it sure doesn't look like ALS to me.

As far as brisk reflexes go, my neuros have told me that some folks just have naturally brisk reflexes. If you have a Babinski sign, that is usually indicative of central nervous system damage.

There are a few forms of MS that are known to elude detection in MRI's. Primary progressive multiple sclerosis is one of them. However, a spinal tap/lumbar puncture is usually very reliable at detectomg MS.

Zaphoon

 

[Guest]

Ravisgoyal ... what a coincidence you should find this forum at the same time as someone posts a question about "dermographism" (a form of hives), which has no relationship to ALS whatsoever.

Why were you browsing an ALS forum/support group? Your profile says you have no connection to this disease. Hope you are not implying that ALS is caused by stress and can be controlled ... and that you have a cure.

 

[Guest]

Dermographism

Ravisgoyal ... what a coincidence you should find this forum at the same time as someone posts a question about "dermographism" (a form of hives), which has no relationship to ALS whatsoever.

Why were you browsing an ALS forum/support group? Your profile says you have no connection to this disease. Hope you are not implying that ALS is caused by stress and can be controlled ... and that you have a cure.

Hi Beth,

I'm glad that someone asked me that question, well I have put an alert on Google with Dermographism as the title target, hence when ever someone writes anything related to this I get an email alert in my inbox so that I could help people suffering from Dermographism.

I have mentioned in my post that just like ALS/MND even Dermographism is related to stress. Now if you are confident that its not stress then its fine with me.

I just wanted Brady to get rid of Dermographism.

May be you don't know about Dermographism, just like I don't know about ALS/MND, I have helped people suffering from all over the globe, sometimes it could be really bad especially when people look at you while one is scratching like mad. I've been through this therefore I don't want someone else to go through the same pain again.

Hope I have answered all your query.

 

[Guest]

Thanks to everyone that has responded with helpful information. I have been in quite a panic the last 2 weeks. I'm at that point where everything seems to be piling up (symptom wise) and it'll be months before I can get in to see a doc

Of course part of the reason I'm writing here is to hopefully get some temporary relief by your words and opinions, but also to get ideas of how I should further approach my symptoms.

I'm not going to list all of my symptoms again, but if you need to refer to them, I listed them at the beginning of this post.

for the past 2 weeks, the 2 main things that have really been bothering me, are weak wrists/arms, weak ankles/feet and loads of twitching. There are several areas of twitching, and one area remains constant. The side/bottom of my foot. At any time, I can look at my foot, and see twitches. Off and on, I 'll get twitches in my calves, arms, and a few others areas.

My wrists and hands have felt very very week for the past 2 weeks. Granted, I havent dropped anything. But even picking up a fork, "feels" like it's hard to pick up.

One thing I've taken some comfort in ..is that one of my first symptoms that struck 2 years ago, was severe itching all over, especially my legs. But after reading through the als forums, it seems like person after person ..that has been diagnosed with als ..has complained of the exact same thing.

Like many others before me, I am extremely paniced. almost to the point where I can't operate. I'm having problems with my family, my girlfriend, my job, and with my own thoughts ...because of my symptoms

Can anyone please chime in with some more opinions as to what my symptoms might point to?

thanks

Brady

 

[Guest]

I have mentioned in my post that just like ALS/MND even Dermographism is related to stress. Now if you are confident that its not stress then its fine with me.

Ravisgoyal, we do not know what causes ALS and there is absolutely no medical evidence that we know of which claims that ALS is stress related.

 

[Guest]

Hey everyone. I'm heading to mayo - scottsdale - aug 11th. Has anyone been there for als? any opinions of that location? And can anyone suggest what to say and what not to say, once I'm there?

Also, if anyone has any opinions to my post #11 on this thread, I would appreciate it.

Thanks,

Brady

 

[Guest]

Brady you were assessed at the Mayo Clinic almost a year and a half ago. Did they do EMG and nerve conduction tests? Lots of your symptoms do sound sensory or anxiety related i.e. the buzzing, tingling, pain. Sounds like a good idea to get tested again and since you likely had EMG and nerve conduction tests comparisons can be made. I would write down a chronological list of symptoms--be very factual. I wouldn't use terminology like it "feels hard to pick up a fork". It is either difficult to pick up or it isn't in the mind of the assessor. My husband has CIDP and he couldn't turn a car key, pick up a coffee mug, or use any eating utensils by the time he got diagnosed. It was very evident on examination. You have to be careful to be very objective about yourself. Anxiety can cause many sensations--like buzzing sensations on the body or ringing in the ears. And the examiners will be zero right in on that and label your symptoms as psychosomatic and/or stress, and they could get side tracked as you are going in there with a label of "stress" from your last assessment. This can cause them to overlook legit symptoms if you are too focused on the feeling symptoms. They need facts and not feelings or sensations. Since MS has been eliminated, they probably will be thinking Benign Fasciculation Syndrome. But repeat testing is good as things like MS and CIDP can cause more damage over time and thus easier to diagnose as time passes without treatment. Good luck. Relax and stick to the facts--not feelings. Doesn't sound like ALS at all to me.
Laurel

 

[Guest]

Hi laurel. Thank you for the response. When I was at mayo a year and a half ago. They did not perform any EMG tests. And you're right, they are definitely ready to label my symptoms, anxiety. And I see your point about saying things like "feels" like. It just seems so real to me that it's hard to avoid saying things like that. But I will definitely take that advice. Thank you.

You said "They need facts and not feelings or sensations" ...what do you mean by sensations? ...I mean ..alot of mornings ..I will wake up, and my whole body will literally feel like it's vibrating just under the skin. Does that mean a sensation?

Another thing, I mean ...right now, I am in a very paniced situation. Things are falling apart over here quickly. So as part of me being paniced ...i've opted to go to mayo clinic, with the idea that I probably have als. Now whether anyone believes that I have it or not, ...should I bother with mayo? ...or could a local clinic do just a good a job ..with EMG's and that sort of thing?

I'm just really scared..

I really appreciate everyones opinions and trying to calm me by telling me it sounds like stress or something other than als. But like many others before me, I just have this deep down feeling that its als


within the past 2 weeks, the tops of both of my forearms have had this strange "sore" feeling, in the muscle. It's still there and hasnt gone away, and now I'm starting to feel it in my biceps. I just can't figure out what it is.

And then this morning while I was sitting down, I was watching my calf muscle have little random twitches, and I remember reading that if a muscle is relaxed, it's not that big a deal. So I flexed the muscle, and as it was flexed the muscle was twitching even worse. It looked like "rolling" twitches. I remember reading that those are the type associated with als.

Could that still be BFS? or should I really be concerned?

thanks,

Brady