Frustrated. My story

[sjob]

hi everyone!
(not diagnosed)
i´m a 31 year old male with a strange story of symptoms. I´m not really here to get a diagnose but i have bin dragged into this dr. google phenomenon. I just want to tell my story. Maybe someone want to comment. I feel a little bit alone with this. If you are tired of storys, do not read.

I have had a crazy year.
- april 2009 my wife and I got married (in New York).
-june 2009 my wife told me she was pregnant
-june 2009 my father was diagnosed with lung cancer, the ugly one (non smoker)
- 17. of august. The day my life really turned upside down. Do not ever think its going to be the same. Eating dinner and suddenly it felt like someone put electrisity to my head. Nausea, dizziness, fever followed. Thought i got a stroke. MR + all kinds of tests showed nothing. it continued several times a day. No sleep. Then 2 weeks later burning and tingling sensation all over my body + electrisity and no sleep. I was going crazy. My right arm and leg felt weak (do not think it was) Thought i was going to die. Almost prepared for it. Taking as much care of my father as I could. Poured out hope and coping with my own fear.
Then the muscles. Whats it called? fascikulation. All over my body. Dr. google led me to you.
I got an appointment with a nevrologist. He was fast. Reflexes ok, a little bit slow on right leg. Spinal punction, blood tests negativ. Then I told him about EMG.

-EMG of limbs october negative

It is all in your head!

- My father died 23. of desember (he suffered bravely, 62 years old, miss him)

- Alot of my symptoms went away, but fascikulations stay.

-EMG march of tounge negative

It is all in your head!

Weekness continues, espesially i right leg. I can run but it hurts and its heavy. It gets worse.

Can not believe that it is all in my head.

New second appointment on monday at one other nevrologist. (no specialist in NMD)

One question. could that first EMG in october be to early to diagnose ALS

I have the most respect for you people coping with this disease.

I do not know if there really is something wrong with me but it sure feels like it.

I wanted to share a short version of my story. I have followed you for a number of months now crying and laughing. Taking care of a perfect 4 month old girl.. Days go by.
(Sry my english)

 

[Al]

Welcome but sorry you think you need to be here. Sorry for the loss of your dad. I'm no doctor but your symptoms don't sound like ALS to me. Stress, which you've had lots of can do strange things. See what the second neuro says and let us know.

AL.

 

[JeffP]

i to am sorry about your dad like al said you you want get a second opinion but it doest sound like als to me just my opinion jeffp

 

[wright]

Your story is not the story of someone with ALS . . . it isn't even close. Why? Because your symptoms came-on literally overnight (that doesn't happen with ALS) and all of your symptoms (except for the fasics) went away (that doesn't happen with ALS).

Fasics can happen for so many reasons and the story you have presented (i.e. the changes in your life along with the illness of your father) could certainly be one of those reasons . . . and in my opinion . . . THE reason for your fasics.

If you present with lower motor neuron symptoms and they were due to ALS, then the EMG would be indicative of ALS . . . so to answer your question . . . NO, your EMG could not have been done too early, because by the time ALS symptoms present, the disease process has been going-on for some time, and the EMG would show that.

I wish you peace.

 

[sjob]

Hi all

Thank you so much for your replies. Good words warms my heart.

I have red on this forum that there is a number of ways ALS can show itself. I am worried. Not about fascics but the weekness with fascics. I too agree that it would be a strange line of happenings if it turned out bad. (but I do not feel lucky) I try to see the facts but it also includes a NMD disorder based on my symptoms. But I am not a nevrologist.

I`m really trying to live day by day.

The reason I posted was to tell my story and show my sympathies to you living with this diagnose. I have followed you for a period of time and felt it ok to "show" myself.

I am sorry if I offend you. I am not going to run you down but i will put in a post now and then if it is ok. If there is anything I can do, or not do, let me know.

Take care good people

 

[Twinsmom]

Sjob...no offense taken! Posters just trying to reassure you your symptoms do not look anything like ALS. So...something ELSE is where you should be looking for your source to diagnose what's going on with your health.

You have had a whirlwind of a year! My condolences to you for the loss of your father. BUT...on a happier note, if I count correctly, you should be a new father by now, right? I pray the blessing of a new baby and all the craziness that brings to your life will be a positive distraction from your worries.
Peace,

 

[sjob]

Well. Back from the neuro.

Result:
No abnormal reflexes
No muscel waist
No sensory abnormalitys
I dont know what Hoffmans and Babinski is, but probably ok

It is all in your head.

No EMG is needed.

Apparently I have to live with a week leg and fasics. Thats me now. Hoping for no worsening. (If so I can`t walk anymore)

This neurologist also said that ALS almost always starts symmetrical?

I would believe that after 9 months and all those tests I have to be clare. I would at least get a "maybe, or you come back after 3 months. But there are no guaranties in life.

I thank you so much for your support. Your all in my prairs.

Just some information. The first nevrologist said that he had done one "mistake" in his 40 year carrier as an specialist.One guy he said that he didn`t think had ALS, showed up at control 6 months later with ALS. The rest was pretty clear to diagnose. But you have to exclude. I would think its hard to put on a definite diagnose when not all tests are done. But at the end, is it really that hard to diagnose? Wright?

 

[Twinsmom]

It is a disease that has no ONE diagnostic test to confirm a diagnosis. You basically must test for EVERYTHING else and have them ALL ruled out before an ALS diagnosis is given. It is one of the most mysterious diseases in that there is no clear cut way of diagnosing, no way to stop it's progression or be cured of.

If you are still having symptoms, your doctors should be doing MRI's and other diagnostic tests to see if its a muscle condition, pinched nerve, viral infection, etc.

Peace,

 

[sjob]

Hi Melody.

sorry if I write uncleare. Because that is what I know after reading up. That is why my nevrologists confidense worries me. What I was thinking is that is it possible to go from no als-possible als- als. Im afraid they miss something because of the rearness of the desease.

I want to believe that they would have to find something wrong after 9 months. Abnormal reflexes or something. I dont know. Time will show.

I pray for you all.

 

[sjob]

Hi all

I wright a question here and maybe someone sees it.

I wonder about weekness.

I can still run but my right leg makes me stop earlier because it gets tired and hurts alot. I feel the weekness is located on the wrist. After a short workout it gets really sore. When I do other strength test (walk on heels/walk on toes) its ok. There is clearly something wrong with the leg. I have had this problem for 9 months now with slow (really slow) worsening. My neuro told me that they would see clinicle weekness by this time if I got it. Is that some of your believes? I do not trip or fall. Maybe because I am too focused on not to.

I would think that if I had weekness I would not even ask this. Do you agree? Im so afraid its early faze.

Popcornmaschine on right leg. And battery AAA on foot. Goin crazy.

I`m left alone. Have no one to go to. Every neurologist an GP are done/tired of me. Is it possible to ask for more?

Pease and prairs

 

[sjob]

Sorry my english

 

[sjob]

Hi.
I`m now getting weaker in my right calve. Alot of fascikulations in calves. some can be seen some can not. Some mild cramps. I have now again got a new appointment at a nevrologist for another EMG. I would like to ask some questions that may have been answered before, but can not find it:
1) Is the EMG test just the needle. How can you then test between toes, under feet and top of feet etc.
2) Earlier the nevrologist have just tested big muscle groups. Is that normal? I would guess that he can not catch early onset decease?
3) Is there some spesific muscle groups that are victims for early onset (limbs)? Should I ask to check them spesific?
4)Can you have ALS with no babinsky sign or brisk reflexes?

I have worked and studied health care for 8 years. I do not want to read up on this yet,because I do not know the outcome. I just want to be at most prepared.

It has been 10 months with symptoms. 3 EMG. 2 of them in oct/nov 2009(do not think he was accurate with his needles). One march 2010 of tounge and shoulder. One second oppinion without spesific tests. All came out normal.

God bless

 

[Northern Dancer]

Sjob,

Remember that only a neurologist seeing you in person can diagnose you. You should have more confidence in that person that anything you can find here.

This is a forum based on personal experiences and everyone feels things differently. With all the neurological pathology that I have, I did not notice anything that made me wonder what was wrong. Relax. Ask your doctor if you would benefit from a medication that would control your panicking. Right now that is your biggest problem, no?

All my best,

ND

 

[sjob]

Hi there ND

Thnx so much for the reply.

I agree with the medication, but I do not see myself panicking. But I am depressed. I was on medication but seponated it in february. I go regulary to a psyckiatrist. I see this appointment at the neuro as the final struggle to find out what is wrong. If this turns out with no diagnose (which I doubt), I must go on. I`m not saying that it is ALS, but something is wrong. I have no right not believing my nevrologist. I trust him, but one thing I have picked up is that it is complexed. Those questions is for me to feel that I get the best investigation as possible. I do trust my neuro and we have a good tone.

Are the questions silly?

tudelu

 

[Northern Dancer]

Sjob,

There are no silly questions - only silly answers. Have patience. This all takes time. Sometimes symptoms are baffling. Really good doctors are not afraid to say " I don't know." Until then, stay on your medications. Breathe slowly. Try meditating - it can't hurt.
Wishing you peace and hope.

Northern Dancer