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abbygirl

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8 weeks ago i had an infected toe. took an antibiotic. two days later had severe heat in my feet. each night it progressed up my legs and then to my chest and arms. it continued like that for approximately four weeks. had a brain mri, cspine mri, and all kinds of tests. all negative. the heat now is mainly in the bottom of my feet which turn beat red every night. palms of hands also beat red and tender. since then have experienced twitching twice in my left leg. also during intercourse my feet start to burn.
no weakness in muscles yet. but i am woken up nightly with penis errections. then last night i was woken up by a tremor in the back of my neck. like a washing maching in the rinse cycle. changed my neck position and it went away. small twitching in the neck during the day. i am waiting to see a neuroligist. i am worried about als as my uncled died of the decease. anyone with similar symptoms?:confused:
 

Al

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What would ever possess you to think that you might have ALS? None of those symptoms are even close. McMaster in Hamilton is as good as the Mayo if you might have ALS but I'd bet you don't. The burning sounds more like a diabetic neuropathy or some kind of reaction to meds.

AL.
 

abbygirl

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Thanks for the encouragement Al. The mind plays amazing tricks.

I continue to have twitches all over the body. Actually seen my first one under the skin next to my elbow. At least I know the twitches are not in my mind. They do not last long except for the one in my groin.

Feet continue to be the major problem. Helped my wife for an hour with yard work and they were on fire. Could be neurapothy. Diabetes tests have been negative.

Need to see a neuroligst. Keeping my McMaster appointment and trying to get into the Cleveland Clinic sooner

Thanks

Abbygirl
 

awieleba

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HI

I am wondering what antibiotic you were on? THere are ones that can cause BAD neuropthies. I was on high dose antibiotics for C-DIFF and I had some of that and researched on that I was on and it had bad side effects so I stopped, it was flagy. And I was taking anther one, I cant remeber the name and my doc said it can cause redness or flushing.....just a thought as this all appreaded after taking them. and you may have an infection in your body from the foot.

take care

april
 

abbygirl

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it was just novacloxin a simple penicilin. yes after i came off it the heat in my body went away for about a week. then returned after i lost control of my bladder. haven't had heat in the body lately. just these dreaded feet. constantly have to cool them down with water or a fan. And now the annoying/worrying twitching. probably from anxiety?

Thanks for you input April

Always appreciated.

Abbygirl
 

awieleba

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if you are having bladder issues and the burning pain, I really think this could be MS. I was mis-diagnosed with MS ( I am not getting into details). also MS has 'classic' thing with the neck. I dont rember what it is called, but when you put your neck to chest and you get a zing.

Have you had a eval for MS? MS is no picnic, but alot of people live long and there are sooo many new medicines for it. YOu can get twiching with it also. I really think you need to look at that rather than this!

I wish you luck, it is so hard when you dont know what is going on.

take care

april
 

abbygirl

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had an mri of the brain and cspine. there were no lessions.
so they have effectively ruled out ms.
no zinging feeling when i put my neck down.
bladder is now under control. watching my sweets and drinking alot of
cranberry juice.


just burning/sore feet and a lot of sore muscles and twitching.

just an awful feeling to have things going on in a body that has never
been sick in all these years.

twitching is playing games with my mind. hopefully a visit with
a neuroligst will help ease it.

Thanks again.

Abbygirl
 

awieleba

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abby

there are other things for diagnoseding MS. You would still need to have a spinal tap to look for certain bands and a ncv on nerves.

have you been checked for diabetes? it sounds like neuroapthy to me, hold on to that.
 

wright

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As Al said, how on earth did you come up with ALS from your symptoms? That isn't even close to ALS and frankly isn't close to MS either.

Given the fact that your feet and hands turn red indicates some type of inflammatory response. It sounds severe enough to cause some local edema which could then result in the neuro symptoms that you are having. You could also have some type of neuropathy that is autoimmune in nature, given your infection. Your neuropathy (if that's what you have) also sounds as if it is a small fiber neuropathy, which is difficult to detect with EMG. Therefore, your EMG might very well be clean if you get one.

Relax and let your docs figure out what you have.
 

abbygirl

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Thanks for the input. I am starting to believe everyone that it is not ALS. Did you read my follow up thread called crazy symptoms update? i was asking for somebody to tell me i was over reacting to the twitching. Feet continue to be unbearable after less than 20 minutes on them. twitching has also become more noticable and in different spots. also when i went to bed last night my whole body jerked a couple times. Muscles continue to hurt.

Still trying to get into a neuroligist. Hoping the Cleveland Clinic can move up their october 8th appointment. Hoping the cooler weather will be better for the feet.

I am starting to think that i am in for a long diagnosed. Seems to be the norm.

Your input and time has been extremely valuable and is very much appreicated.

Thank you so much

Abbygirl
 

jskierz

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Your local doctor should be able to get you an emergency neurology referral at a Canadian Hospital. Your health care provider may not pay for a US consult. I was seen within two days at neuro clinic and admitted to hospital the same day as they saw me for the urgent referral for more testing.
If nothing else go to the nearest large hospital emergency and get seen by the oncall neuro - better than waiting for months for a possible appointment.
 

abbygirl

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Thanks for the tip. I have an appointment at the Cleveland Clinic on September 15th.
Yes i will have to pay out of my own pocket. Depending on what the neuro says I may then go to my GP and ask for an emergency referal to McMaster as you have suggested. I wouldn't go to any local hospitals for a neurological problem. I have also called my neuroligist at McMaster to see if i can move up the November 23 appointment. Either way I will get the recommended testing done ASAP where ever i can.

In Ontario, if you can walk in to the emergency under you own power the odds of them treating you is slim.

Again, thanks for all the valuable information and suggestions

Heading to Cleveland!

Abbygirl
 

abbygirl

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Question for Wright?

Have had two straight nights with body heat and muscle twitches and jerks.
Went to see my GP. Tested my reflexes and they are at 75%.
They were normal two months ago.
Any significance?

Abbygirl
 
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