Im at the end of my rope..

[mars]

Please im just looking for help here and mean no disrespect to any one suffering with this horrendous affliction..

Going crazy here.. twitching, numbness, cramps, vibrating all over body. Been to ER many times. Just went to Neurology and had the nerve test and the DR looked puzzled at what is going on with my right leg, they said it was not nuropathy tho as i do have type 2 diabetes.

But refused to tell me anything till the other Dr calles me, they had a lot of trouble getting any results with my right leg, and the one dr doing the test said "This cant be right" and i said "Is it me or the machine" She told me, "It could be booth" My HART DROPPED! Since then i have been in a state of unreal fear. Im going CRAZY here.

Here a list of that i have been dealing with since June 2009

Pain that travels around body
Over the summer i had pain in the middle of my breast bone that made thing i was having a hart attack.

Also in the summer my legs and arms were so stiff i felt like i could not walk, not so much weak but unreal pain

Numbness in hands and legs
Twitching all over
I went to ER because i had intense spasms in bladder
Vibrating in hands and feet
Head busting pains in my face and jaw
Muscle twitching in legs and hands, i can see it, like popping under skin
Some times i feel like my leg is not there
Sometimes i get pain from any kind of activity
I have had 2 centrally hurnated discs, L4-L5-S1 since 2005
I have had weeks of vertigo
TMJ
Panic attacks
Feelings of unreality
Feeling of falling when in bed
Zaps in head that are scary
Shocking sensations
Unreal crushing back pain
Sciatica

I take benicar for HBP, blood sugar is controled well with diet but i think im lacking some kind of nutrition since i started this diet in june around the time all this started. I take mega does of B12, C, Magnisum and COq10 but nothing had helped.

I have had EKG's of hart that show some slight abnormality, but a CT angogrom said my hart was fine, i had CT scan of abdomin that was fine. Like i say nerve conduction test shows some issues with right leg but they have not called me back yet, Tested negative for Lyme. Im going insane here, fear of ALS or MS.. Or who knows what. I have ether constipation or extreme gas and runs, im a mess and losing it. I live in constant fear and anxiety. I have been in a state of nervous break down for half a year over health and life stress. Told i have PTSD, Anxity, Stress and all the rest.

Is there any hope?

The nuro Doc did tell me i had not out ward signs of any disorder, all kinds of motor tests were 100% ok. They only wanted to test me for nuropathy but told me I DID NOT HAVE THAT

Sorry for spelling and gramour mistakes, im freaking out here, im sorry every one im just so lost and freaking out :sad:

 

[mars]

I would also like to add, i have sensations of tingling and bugs crawling around lips and face.

I have a hard time swallowing, voice seems week when tired too. But that comes and goes, had that for years.

some times i get tingling on tong

 

[Ratman55]

Hi Mars: It's understandable why you are so anxious with those symptoms. While you do seem to have some that may indicate ALS, yours is not "typical" of how this MND (motor neuron disease) presents. First, without accurate tests EMG, NCV etc, no doctor will make any valid diagnosis. Secondly, ALS typically presents subtly with specific weakness, fasciculations in limb or limbs, problems with speech, swallowing etc. My neurologist said that there is no typical presentation, however. You did not really say how this all began. I'm not a doctor, but in this forum we are told not to jump to conclusions. Some of us received accurate diagnoses early and others had such broad and varied symptoms that their diagnosis was more difficult. For now, try to stay calm until your neuro can make better sense of your symptoms. Lastly, muscle weakness that is caused by wasting (atrophy) does not come and go so much. When these neurons die, they don't come back. If your weakness is sporatic, it is likely caused by another issue, not ALS. Read other posts here from members with more time on the forum. Stay around and good luck. Sorry, you're having this happen. -JK

 

[paleshia]

seems to me the first thing i would do is ask for help to get the anxiety under control...with everyhing going on...i bet you can hardly think straight. also, i never had any sensory issues like tingling or numbness. good luck and try to find ways to make yourself relax.

take care

 

[mars]

I had a nerve conduction test on Monday, but no word yet. I called yesterday and they said it's too soon. I can't take the stress. I fear I may have to wait till Monday. All I can do is sit and wait.

 

[ktmj]

mars,

obviously something is wrong and "wearing you out" physically and mentally. A lot of us have been there and you will get through the mental part.

As for the physical, it sounds like a neuropathy with all the sensory symptoms you describe. Or something totally different.

It would be very abnormal for ALS. Repeat that a few times. Let that thought carry you through until you get the EMG results.

 

[ktmj]

mars, let me clarify something.

Even neuropathies are sometimes very difficult to diagnose. There are forums for neuropathy sufferers too, and some of them took years to diagnose. Hang in there.

 

[mars]

Thank you every one.. thank you so much, still waiting to hear back from DR

 

[mars]

This has been going on since June, today i have less twitch but now i have pains in the center of my chest, breast bone and in my back. I attempted to be active today and used these muscles and now this pain. I had not had any upper body pain for a few days. Im not weak but just in pain. Im sure now i wont hear anything from nuro doc till monday. I feel hopeless and insane.

 

[ktmj]

mars, I know this is frustrating but you need to prepare for something. Listen to me carefully because my heart truly goes out to you. I have been in the exact same place you are now.

Your anxiety meter is max'ed out. I am NOT saying that you don't have some physical issues going on. Nobody knows your body like you. I AM saying that anxiety can make the actual symptoms much worse. The best analogy I can come up with is it's like pouring gas on a fire (since I'm a redneck that's actually pretty fun to do, but I digress).

Take the next few days and focus on the best few things in your life.

Now, my main reason for posting. Don't be too shocked to hear the words "you are fine neurologically" with the test results. Maybe they will find something definitive, maybe they will find something they want to explore deeper, maybe they will find nothing. Don't let any of those scenarios surprise you. Sometimes neurological issues, and particular neuromuscular, are hard to diagnosed.

Look, I know these are words on a page. Trust me I have been where you are, and it is a miserable place to be. Only YOU can pull yourself out of it, with the help of those you love and maybe some professional help.

My best wishes and Happy New Year.

 

[mars]

I hope they call tomorrow, i walked up and down the stairs a few times and my leg is twitching like nuts, it seems to get worse when i use my legs

 

[mars]

I have called and even went to the DR's office, i call every day. Nothing to tell me, im losing hope here. I have a few questions so ask of other members tho..

Some times i have no twitching at all, if this was ALS would that happen?

Some time i have very bad pain in my spine, i think is from my back injury, at that point i notice less twitching, why?

I notice my tongue is scalloping, been like this for some time..

I have problems swallowing but had this of and on for years, but is it correct that i would have choking if this was ALS?

I dont think i have any weakness, the nuro dr at the last visit said i was strong, but in the past i had been week but it goes away, does that sound like ALS?

I feel like some times entire parts of my body twitch at once and almost say there

I notice my right leg the one that the has issues getting the EMG device to work on looks smaller then the left, when they were doing the test the one with the thing that looks like a stun gun they could not get any results. Im freaking out about this the most.

As i sit here now i notice much less twitching then a few days ago but think it could be because the muscles are now dying, also i have a new pulsing like twitch in the right side of my head.

Im able to walk on tippie toes and do not feel weak, i feel shot because i have not slept in days tho. My left arm feels weak but i can lift 20-30 lbs with out much effort with sitting down when using that arm.

Its hard to deal with all this, it all started in June when i had pain in my right wrist and and kind of moment brings pain to my breast bone and upped back and arms, i seem to pull muscles so easy too, but this comes and goes.

Im sorry to ramble on like this, but im so upset and hopeless, and this jack ass dr not calling me back is making me freak out, i have been calling every day for over a week, going up to the office, pleading..

Sorry every one..

 

[GlenBrittle]

Hi Mars,

Twitching can be caused by so many things. The worst of which is ANXIETY.

Coming and going pain is not a symptom of ALS.

ALS weakness , is not something you can feel , it just happens and never gets better.

Is it possible that your doctor is waiting for a specialist to interpret the readings ?

YOU NEED TO RELAX ! I know , it sounds like a brush off , but its not , just do it.

Glen

 

[irismarie]

Don't say sorry to us, dear Mars. We are sorry for you<<<<

you are being your own worst enemy at the moment with the terrible stress you are going through.

In life there are things we can change and things we cannot change. Find a way to work on the things you CAN change and try to let go of the things you cannot change. No amount of anger or movement or tears will make the doctor ring until he is good and ready. Maybe he has not called yet as he is giving himself time to learn more about your case. Maybe he is just a selfish idiot as some of them are. The only thing being mad about it will change is that you will feel worse.
Rise above him and his delay. Whatever is wrong with you is not going to change that much in a few days

To be honest your symptoms are not typical of ALS but that means nothing. Clearly you have SOMETHING wrong.

Now your excess of stress is clearly going to make your symptoms worse - I think we can all assure you that is the case - so you could do yourself some good by trying some kind of relaxation. Lie down and close your eyes and imagine a beautiful place where you would love to be - or maybe take a look at my garden album on this site and imagine yourself lying under the walnut trees, looking up at the blue sky through the dappled shade of the leaves. Leave the anxiety and fear and anger back over there and visit the South of France in your dream state. It is hot and the cicadas are clicking and the nightingales are singing - yes they sing in the daytime too in my valley. Nothing can touch you to hurt you. Gather some strength and little by little try to divide the strength into parcels you can pack into various areas of your life. This parcel of strength can work against your fear and help you to realise that fear cures nothing and aggravates much. this parcel of strength can spread itself around your body to soothe pain caused by stress and boost your own healing powers.
Let go of anger and fear. They are destructive.
Love be with you
IRismarie

 

[indigosd]

irismarie, you had me so relaxed that I almost fell off of my desk chair! Beautiful advice to soothe the soul.