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mdf3254

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Hello,

I'm not sure I can get PM's - so I apologize to Wright if this is a duplicate:


I have been going to various Dr's for awhile trying to figure out what my problem is.. here are my symptoms:

About 6 months ago I started having night sweats... no other symptoms... I went to my GP who sent me to an onc because he felt my lymph nodes were enlarged under my arm (fearing lymphoma of some type).

So, CT Scan and PET scan negative.. no cancer can be seen. For the last 2 months, the night sweats have subsided but I have some other strange symptoms...

I have a twitch in my right thigh. I also have a dent in my thigh muscle that I don't have in my other leg. The muscle overall seems smaller slightly when I compare the muscle ridges to my other leg.

I have no weakness in the leg - I run regularly.

My right arm is "tight" and slightly enlarged - my bicep muscle is tight and so is my forearm(swollen is too big a word for what is going on). My knuckles are swollen and my hand is sore along my thumb bone - the skin between my thumb and forefinger is swollen. My arm feels heavy to me.

My feet (both of them) are slightly swollen in the arch.

It's the muscle twitch and dent that led me here as I'm trying to find a reason for my problems...

I'm more worried about my arm and the upper neuron symptom of tightness than my leg as I have no weakness.

You think ALS be any stretch of the imagination?

Thanks in advance for your response.

Worried,

Bob
 

mdf3254

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Please if someone could comment I'd be most appreciative...

Just really worried here...
 

dimd00d

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Hi,

>I have no weakness in the leg - I run regularly.

When I've asked my neuro if I can have legs affected by ALS and I can run 5km every morning, he said to me - "ALS doesnt run".

Dents are normal, you probably havent noticed it before - I have a big one on my calf, from pressing on the chair leg every day (I keep my legs folded under it), if you had muscle atrophy, you would have weakness with it (and you dont ;) ).

As for the tightness - I dont know if its a UMN symptom, spasticity is, but from your description it is not that bad.

See a neuro and relax :)
 

mdf3254

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Thanks Dimd00d.

The more I read the less concerned I am about my leg - I just don't think there is weakness there.

My arm on the other hand worries me - it's the symptom of "hypertonia" that I think I might have. My bicep is tighter in one arm than the other - my forearm is tight - my fingers are swollen and my hand is too.

I don't think I have weakness in my arm but it's uncomfortable.

I'm just scared.
 

dimd00d

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You are welcome.

I am not a doctor, but I can give you some advice - stop strength and flexibility testing this arm every 5 minutes - I know you do ;)

If you want to, you can take some magnesium and B complex supplements, they should help you some with the hypertonic muscles.

I know you are scared, we all go thru this - a stress & single twitch & google -> ALS self diagnosis. You've seen alot of doctors for 6 months, if it was ALS, they would've noticed the symptoms and referred you to a neuro specialist.
 

awieleba

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I understand being scared, but your symptoms dont sound like als. I think alot of people can get a tight muscle. are you on any type of medication?

It sounds like with the night sweats and nodes that you have an auto immune issue running through your system. Back when I got sick (to long of a story) i got night sweats, enlarged node under neck (still have) and low white blood cells, elevated liver panel. I had to see a hematologist and almost have bone marrow biopsey. It all normalized. I then was left with twitching all over and weak muscles that shake. I am still hoping autoImmune but have twitching, brisk reflexes, myoclonus, shaking legs.

If you can still run, that is good. I cant, and I cant play my tennis.( I was obessed with it) I can walk and barely play 9 holes golf-I am thankful for that.

Anyway, sounds like you have a virus or somthing working through your body. Hold tight. You can run and do things normally. untill that changes, I wouldnt worry to much.
Maybe seeing a neuro will give you piece of mind, they will tell you if you have hypertonia or just stiff muscle. (certain meds can do that)

good luck

april
 

mdf3254

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Thanks again Dim.

It's just been weird - the night sweats stopped pretty much and then after investigating all cancer related possibilities I get this arm problem.

That' just f-d up - how could I be going down the path of night sweat related causes and then get this arm thing right around when the night sweats subside that sends me down the ALS path.

I know night sweats aren't a clinical symptom of ALS - just so confused.
 

mdf3254

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Thanks April,

I'm on no medications.

I guess I'll just wait and see if things get any worse (I guess they will if it is ALS).

I was debating on going to get a ALS evaluation done but maybe I'll wait until something else transpires.

I hate this.
 

mdf3254

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April -

Where are you at with getting a diagnosis?
 

dimd00d

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Ok, if this will help you relax some, here is my story:

It all started about 1 1/2 years ago with twitching in my left hand muscles and some back muscles cramps which I chalked up to sitting all day on the computer.

Then last october - paraesthesias up my arms and legs (the tingling feeling) - self diagnosed myself with MS - neuro said im an idiot.

Immediately after this - night sweating so bad I couldnt sleep and 'knew' I had a cancer for sure - one morning just ran to the hospital and demanded full CT scan - clear - neuro confirmed the 'idiot' diagnosis and the sweats just stopped the next evening.

Then I've googled twitches and guess what came up :) Started constantly strength checking myself for days - and surprise, surprise - my right foot arch was slightly swolen and right hand muscles slightly more tight than the left ones.

Long story short - I run more than before, can make much more pushups and my arms muscles are few centimeters bigger than before (I know, I measure myself from fear of atrophy ;) )...Neuro still thinks I am an idiot :)
 

mdf3254

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Thanks Dim -

In a lot of ways your story reminds me of mine....

Sounds like you're out of the woods - I hope to be but can't seem to shake the fear for now.
 

crystalkk

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Bob,

I am from Philly too. If anything it does sound autoimmune like April said, I would go to a Rhematoligist
not ALS specialist. How where your reflexes when the nuero checked them?
 

mdf3254

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In the litany of DR's I've seen, I've not seen a neuro or rheum guy yet as the cancer thing has just been eliminated from contention last week.

So, that's where I am.
 

awieleba

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ddog9876

Hi,

thanks for asking about my diagnosed.
I am in the same place as many on here. I have had mri, c-spine, low spine, ton of blood work, and a emg/ncv. they have all be fine. sooo, next up will be muscle biopsy and maybe lumbar puncture. repeat emg in november.

I have seen a rheumy already. My twitching the last 5 days has eased up about 60%, i hope that it continues. Still have a problem with leg and I feel weak in my arms. still no tennis or running. but I guess it is not getting worse. I was just bumbed that the mri on my spine was normal. Hoping for a pinched nerve or somthing to explain the leg. Oh well....

you take care, i really think that it is virus/auto immune. it doesnt even really seem on the radar for als. but what the h*** do I know.

april
 

mdf3254

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Good luck to you April.

I share your feelings on wanting one of the thousand of tests I've been through to show something (benign of course) but something.

It's brutal knowing there's something wrong with you but being unable to have the medical people figure it out.

I hope you find something "trivial" is causing your symptoms.
 
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