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wondering

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I mid August of 2008, I was in the middle of about a 30 minute walk and all at once I felt a sharp pain behind my right knee. I didn’t think too much of it and continued on. After a couple of minutes, my right foot started feeling a little numb. Again, I continued the rest of the way home and rested it when getting there. The numbness went away within the hour.

I did the same walk a couple days later and the exact same thing happened to me again and I followed the same procedure as I did the first time it happened. Again, the numbness went away within the hour.

Through late August of 2008, I continued to have the sharp knee pain and foot numbness so I thought I better have a Dr. take a look at it. The Dr. thought it may have been a Bakers Cyst and asked that I get an X-ray (to look at the joint) and an ultrasound to look for the cyst. No cyst was found and the Dr. recommended physical therapy. I turned down the offer of physical therapy and just stretched things myself. While at the Dr. I was also asked if I had a tetanus shot lately. I couldn’t remember when the last time I had one was so they gave me a tetanus shot. A day and a half later, I woke up with a swollen lymph node above my left collar bone. I went to see the urgent care on a Saturday morning and the Dr. confirmed the swollen lymph node. He ran some blood tests and said everything looked okay, but he was starting me on an antibiotic that I can’t remember the name of.

The next Monday morning the lymph node swelling was down slightly, but I was very worried at this time so I went to see my primary physician. He also did several blood tests, and an abdominal/pelvic CT which all came back normal. He had me see one of the surgeons just to get their thought of the situation. They didn’t see anything to be concerned about either. The surgeon recommended I get an ultrasound on the lymph node just to see if everything looked okay there too. The ultrasound looked fine except for the node still being a little enlarged. I just left things as is and the lymph node swelling went down to where I actually had to search just to find it.

On September 19th, 2008, I had a physical given by my primary physician and again, everything came back normal. I did have a sinus infection and my Dr. asked me I wanted to get a sinus CT being I have had some sinus surgery in the past which I thought wouldn’t be a bad idea being the ENT would want that anyway when I would decide to see him. My Dr. also prescribed an antibiotic for the sinus infection.
On September 26th, I had the sinus CT and everything was relatively normal besides some mucus thickening which was probably part of the infection and some sort of holding cyst.

Late September (26th was my first visit) I started having the foot numbness without the pain in the back of my knee. I was actually having some major tightness in my right, outside shine muscle. This concerned me a bit and I thought I would have the chiropractor take a look at things too. I went through a couple of adjustment appointments with nothing helping. He then took an x-ray of my spine, but didn’t see anything glaring. Throughout the couple of weeks of adjustments, I also noticed my left foot going numb and then my hands going numb from time to time. These periods of numbness would often be while sitting in my chair at work or in my truck, but they would happen other times also. After telling the chiropractor of the new symptoms, he referred me to a neurologist.

On October 7th, 2008 I went back to see my primary physician again to explain the numbness and he agreed about seeing the neurologist. He also recommended having a brain mri which I did on October 17th. The brain MRI also came back normal.

On October 21st, 2008 I went to see the neurologist for a consult. The Dr. looked at the MRI, listened to my story, ran some basic tests that included reflexes, walking heel to toe, strength tests for my hands and feet, etc… and she thought everything looked okay, but it wouldn’t be a bad idea to have an EMG done.

On October 25th, 2008 I went to see another neurologist at the same clinic that did the EMG. After the EMG (electrodes shocking me and needles in my muscles (arms & legs) the Dr. said the only thing he could see was possible incidental mild carpel tunnel in my right arm and borderline carpel tunnel in my left arm. At this point I just wanted to know “Do I have ALS or MS” The Dr. told me the good news is that you don’t have ALS and it doesn’t look like MS from all the tests that have been done so far. At this point I’m feeling pretty good about not having ALS.

On October 27th, 2008 I went back to see the original neurologist to go over the EMG report and she basically said the same things as the Dr. doing the EMG procedure. She thought it wouldn’t be a bad idea to do a c-spine MRI just in case that would show anything. I did the c-spine MRI that day and the Dr. told me a couple days later that was normal too.

On October 30th, 2008 I was having major burning pain in my knees and some muscle tightness in my legs. They were not hot to the touch, but felt that way under the skin. I called both my neurologist and my primary physician to see what they could do for this pain. My neurologist said if it is knee pain, I would have to talk to my primary physician. My primary physician gave me a prescription for neurontin. I took the following amount on the following days:

October 31st - 300Mg Neurontin
November 1st – 600 Mg Neurontin
November 2nd – 900 Mg Neurontin
November 3rd – 900 Mg Neurontin
November 4th – 900 Mg Neurontin

November 4th, 2008 I went back to see my primary physician about the knee pain and now having more muscle tightness that was not improving and he recommended weaning off of the neurontin and gave me a prescription for prednisone. He also had me setup an appointment with one of the Internal Medicine doctors. I have listed the dosage of both the neurontin and prednisone below:

November 5th – 600 Mg Neurontin & 60 Mg prednisone
November 6th – 300 Mg Neurontin & 60 Mg prednisone

November 6th, 2008 I saw the Internist and she listened to my story and was going to run additional blood tests and rescheduled an appointment for November 18th, 2008.

November 7th – 60 Mg prednisone
November 8th – 60 Mg prednisone

November 7th & 8th the muscle tightness in my legs has gotten much worse so I stopped taking the prednisone completely not knowing what is causing any of this.
November 10th, 2008 I went to see my primary physician again and he did some more blood tests, but couldn’t give me any further information. I felt very light headed and kind of dizzy. I also have felt very tired for the last week or more.

I am so scare of ALS right now, it gets very difficult to even eat. The numbness is still there from time to time, but right now the muscle pain is the what is really bothersome. I could literally vomit at any given time I am so worried. I know this has been log and drawn out, but any help and/or words of wisdom would be appreciated.

Thank you for your time
 

wright

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What on earth gives you the idea you have ALS? Not one thing you just discussed points towards it.

Get off of the internet and let your docs figure it out.

One other bit of advice: keep it shorter if you continue to post because not many people are willing to read such a long post.
 

wondering

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I am sorry for such a long post, but I wanted to be as thorough as possible and I thought including all details might actually give someone some ideas as to why I should or shouldn't be worried about ALS. Again, I am sorry for the long post.
 

broodjeaapspeciaal

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I agree with what wright said. Surfing these boards increases your anxiety.. and anxiety will mentally destroy you.
 

wondering

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I was just looking for any other ideas or confirmation of my symptoms and thought others here would be bale to help with that. I have also had muscle twitches in both leg muscles over the last 3 or 4 days.

I'm not trying to get to wound out of shape, but instead looking for answers while my doctors are trying to the same. Any ideas or thoughts of the symptoms and situation I have explained would be appreciated.

Thanks again for your help and support
 

brendapals

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First of all, yes, wright is right, turn off the computer and rest your anxiety!

Second of all, please, please talk to your pcp- you do not need to abruptly stop taking the prednisone, that right there could have made you have the nauseated feeling.

Once again, rest, rest, rest, then enjoy life and let the docs do the work. Just my 2 cents.

Never give up,
Never let up,
Never lose faith,
brenda
 

patricia1

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No Way Is This Als
Go See A Infectous Disease Doc

Pat
 

Zaphoon

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Wondering,

I was reading through some of your post (got lost in it and couldn't find my way out) and had to ask myself if you were for real. Then it occurred to me that you probably would not have bothered with such a long post if you weren't. Hmmm. ?

Here are some rules to follow that may help your anxiety (if followed to the T!):

RULE #1: You cannot have ALS until a certified, highly trained, highly respected neurologist says you do (this should be of some comfort). AND, you can lay no claim to having ALS until the same neurologist gives you permission. If you do otherwise, even if it is only to "suspect" ALS, you will make yourself sick and those around you crazy.

RULE #2: You must trust and not second-guess the diagnosis of any highly skilled physician that says you do not have ALS. If you do otherwise, you must join your local I.A. chapter (Idiots Annonymous) and attend meetings regularly until such idiocy dissipates.

RULE #3: Do not break rules #1 & #2.

ALS is among the worst sicknesses to dwell and anx on. You will be much better off if you never think of it again (unless you are told you have it).

Zaphoon
 

BethU

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Welcome to the forum

Hi, Wondering ...

Just thought I'd chime in. I know what it's like to have a ton of really baffling symptoms, and have every neuro tell you something different. In my case, it went on for two years.

I agree with those on this forum who have said your symptoms don't sound like ALS, and I hope your doctors will be able to give you a diagnosis soon.

Meanwhile, you are welcome to join our forum, and lurk or ask questions and participate as you need to. Hopefully, you'll learn a little bit about ALS and get some support while you wait for your doctors to figure it out.

Take care!
 

wondering

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It has been about 3 weeks since my EMG in which the Dr. said everythign looked good to him. At that time I was not having the muscle pain, muscle tiredness, and the muscle twitching I am having now. My leg muscles (all of them) have not loosened up in over 2 weeks and I've noticed the numbness in my hands and feet has all but gone away. Does anyone have any ideas or thoghts they would be willing to give me?
 

Jamiet

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u need something to keep you off this board.

Anxiety meds.. wellbutrin worked for me.

Stay away from an ALS board....it will only make things worse! trust us.

YOU 100% DON'T HAVE ALS

Rgds,

jamie
 

houman

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Hi there,i have just registered on this web site and couldnt find how to send messages bu i went through some questions and found your profile.im origionally from iran currently living in new zealand and my mom is back home which they dont have a standard levels of knowledge or equipments im so worried for her
june 2008 my mother felt pain in her ears as she says she felt some thing is shaking in her ears.after seeing specialists they told her there is nothing wrong with her ears!she went home but pain was still there so she went and saw her dentist to see if that is related but they all said that there is nothing wrong with mouth either,in July the pain developed from just ears to throut and tongue.by this time she went to all the possible doctors but no one could see any thing wrong.she did mri and spinal tests and nothing was wrong untill once when she was washing dishes my dad kissed her shoulder and she suddenly felt paint in her whole body especially in her mouth and then started crying for 15 minutes and after that the severe pain went away but all this time she felt her tongue is shaking from underneath but nothing is visible.she saw a neuralogist and he said it could be MS which after a few tests he said there is no singns of it
in Nov 2008 that crazy pain came back to her and stayed for 4 hours which as my mom says the pain was mostly in her tongue and she felt weak as well in her whole body.nothing wrong with the arms or legs till now,
so she has had a couple of painful situations but rather than that the shaking feeling in her mouth and around her neck is scarying me!
so basically since 4 months ago her problem hasnt progressed but hasnt decreases either.her doctor said its low level of ALS but i just wnated to know some other peoples opinions as well

thanks
 

wondering

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I'm not sure what to tell you except for you should probabaly create a new post. It looks to me like what you are asking is something completely different than this posting.

Thanks
 

patricia1

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Hi there,i have just registered on this web site and couldnt find how to send messages bu i went through some questions and found your profile.im origionally from iran currently living in new zealand and my mom is back home which they dont have a standard levels of knowledge or equipments im so worried for her
june 2008 my mother felt pain in her ears as she says she felt some thing is shaking in her ears.after seeing specialists they told her there is nothing wrong with her ears!she went home but pain was still there so she went and saw her dentist to see if that is related but they all said that there is nothing wrong with mouth either,in July the pain developed from just ears to throut and tongue.by this time she went to all the possible doctors but no one could see any thing wrong.she did mri and spinal tests and nothing was wrong untill once when she was washing dishes my dad kissed her shoulder and she suddenly felt paint in her whole body especially in her mouth and then started crying for 15 minutes and after that the severe pain went away but all this time she felt her tongue is shaking from underneath but nothing is visible.she saw a neuralogist and he said it could be MS which after a few tests he said there is no singns of it
in Nov 2008 that crazy pain came back to her and stayed for 4 hours which as my mom says the pain was mostly in her tongue and she felt weak as well in her whole body.nothing wrong with the arms or legs till now,
so she has had a couple of painful situations but rather than that the shaking feeling in her mouth and around her neck is scarying me!
so basically since 4 months ago her problem hasnt progressed but hasnt decreases either.her doctor said its low level of ALS but i just wnated to know some other peoples opinions as well

thanks

A LOW LEVEL OF ALS tHATS LIKE SAYING SOMEONE IS ALMOST PREGNANT .

NEVER HEARD SUCH A THING AND THERE IS NO PAIN WITH ALS IN THE BEGINNNING!

TIME TO SEE A NEW MD.
 

broodjeaapspeciaal

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I agree with patricia.. there is no low level ALS.. only a slow progressive form.. but the disease is still a monster.

Oh, and ALS has nothing to do with pain. Not in its early stages anyway..
 
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