early onset symptoms?

[amyecpa]

Hi Everyone. This is my first post, but I've been "lurking" for a while now. I want to start with saying that i am in awe of the positive and informative responses. I would also like to say that I respect what people living with ALS and their caregivers and loved ones go through daily. I hope my questions don't irritate anyone, because I know they've probably been asked a million times before. I did use the search option but didn't find the answers I was looking for (i'm not too computer savvy).

Here's my story..... I began seein a neuro after a developed right-sided numbness/tingling in 2007. I say numbness for lack of a better word. I could feel stimuli, right side just felt heavy and weird. All MRI's clean, but because this persists they continue to watch me. Recently my "numbness" has morphed into something totally different. I now feel like my muscles are involved. here's my recent (last month or so) symptoms.....

-tried to use a spray bottle with right hand, had to switch to left due to fatigue and crampy feeling; also happened pumping gas

-odd feeling while typing (just feel clumsy), but no major mistakes

-I feel i have a delayed response from my arms (i.e. i go to turn off light switch and my arms are just slow)

-my arms feel heavy (especially right)

Overall, I just feel like my arms/hands are working differently than usual. i have had nerve conduction study done with only minor issues in legs (overall clean report). the neuro did an EMG but a very brief one only on my upper right arm; it was normal. i don't experience twitching or fascilations, but I have developed an involuntary head movement (looks like a tic) and I have a resting tremor at night when I prop up on my pillow and view laptop. I am sorry for the long post and any responses would be very appreciated. Because of previous sensory symptoms, my neuro doesn't feel I have much to worry about. I've read where you guys say LISTEN to Dr, but no one knows like the actual people living with this horrific disease, so I just wanted to hear from the true experts. another quote from my neuro "ALS is a death sentence so there is nothing we could do anyway. We'll just have to wait and see". (not very encouraging) I'm like a lot of people visiting this forum just scared.

Thanks again -- Amye (33yo female)

 

[amyecpa]

Wow, I've had 100 views with no response. I feel like maybe I should elaborate. I am not a hypochondriac. I do listen to my doctor(neuro). He even feels that my symptoms are worth a monthly office visit due to the changing nature of them. He says that if he had never seen my MRI's he would be sure that I had MS, but due to the fact that I have absolutely no lesions on brain or spine, that is ruled out. I'm just getting to the point like okay "heard hoof prints, looked for horses, no horses, starting to look for a zebra". ( I hope that made sense) I'm not trying to talk myself into a rare Dr. Google disease, just running out of options. I have been tested for MS, Lupus, lyme, you name it.

I also feel that I was not clear with my previous post about how my arms feel... I feel like I'm losing control. They just don't seem to want to do what my brain wants them to. They feel weak and heavy. My pinky and ring finger feel useless (at times). I have done LOTS of research and I understand that these are not typical ALS onset symptoms, but there are always atypical cases and I just wanted to find out if anyone could relate. I also know that most ALS patients are exposed to A LOT of different tests and possible diagnosis before that are officially diagnosed so I wanted to see if anyone had any knowledge (you seem to be a VERY knowledgible group) as to what these symptoms could possibly indicate.

Again, respectfully yours,
Amye
P.S. I thank you in advance for your time and patience.

 

[Twinsmom]

Dear Amye,
Sorry to see you are at that limbo stage that so many of us are in. I don't have any brilliant words of wisdom other than, if the EMG/NCT is coming back normal, then that in and of itself would typically rule out ALS. Has the neuro you've been seeing given you any indication of what he thinks it could be? I would consider having a specialist in MND give you a 2nd opinion. Has ALS been discussed as a possibility?

Continue to turn over all the stones, and see what's under them. It literally is that tedious a process. You have to look under EVERY ROCK and then sometimes more than once, to find the diagnosis. Be strong, and don't give up.

Prayers for courage and grace to you,
Melody

 

[laurel]

Amye is your neurologist one who specializes in neuromuscular disorders? Hubby saw a regular neurologist for a few years, he diagnosed Carpal Tunnel and recommended surgery. He had done EMG's and nerve conduction test. Hubby had the surgery with worse symptoms after resulting in atrophy of the right hand and forearm and footdrop in rt. foot. Neuromuscular disorder neurologist very quickly diagnosed CIDP and hubby receives monthly IVIG with good results. The tingling is more indicative of sensory issues that do occur in CIDP. The skill of the person doing the EMG and nerve conduction tests is critical as we learned. It sounds like you need a second opinion. Good luck.
Laurel

 

[wright]

Hello Amye

Your symptoms don't sound a thing like ALS to me. There are certainly "atypical" cases as you stated, but there are still "norms" as to what happens and to what certain tests show (e.g. the EMG) with ALS.

Having said that, there is a form of MND called PLS that would not be detected by an EMG that your symptoms could point towards . . . BUT . . . given your duration of symptoms and how they are manifesting, you would certainly have abnormal reflexes and spasticity along with your other symptoms.

To me, it sounds like you have some kind of movement disorder. I would look into that as opposed to something like ALS or PLS, because what you have shared points away from both of them. I wish you the best.

P.S. As one of our moderators would say "Joel" . . . ALS doesn't have to be a death sentence

 

[victor11]

#

I understand about your worries--
I tried to make a thread, but couldnt write a new thread,

#I started having fascikulations in both calves in november, that went along with tingling and numbness.
I had appointment with neurolog in the beginning of march.
I have some problems with right leg when walking long.
Atrophy started to show inside both palms, first left and then right ( interossos muscles). Now I have an atrophy in calf, and right buttock have lost muscle.Also sometimes get sore in leg muscles.
Joints in hands and arm are cracking all the time.
I made an EMG april 6. They found some old changes in right leg, but say it comes from back, and nothing indicating ALS. They put needles in right leg, both arms and back, but not in left leg.
I don´t know how reliable this is, and I didn´t get any explanation for atrophy.
What is your experience about EMG-tests, how reliable are they? Can they for sure differ old injury from motor neuron disease?
I would be thankful to get any of your thoughts or experiences.

with regards
victor

 

[victor11]

How to make new thread?

It seems impossible for me to work it out, i don´t find thread-mark
I tried to contact moderator , but nio success--
Anybody knows?

 

[BarryG]

Victor11
Go to the top of the "Do I have ALS forum, Is this ALS" forum (this one) and on the upper left is a button marked "New Thread". Click on that and a window will open, fill in the title, post your question, click on "Submit New Thread" and you are done.

 

[victor11]

Thank you very much for your kind help
Best regards
victor

 

[amyecpa]

Thanks so much for the replies. I am being tested now for myasthenia gravis. My neuro and my GP feel that I definitely have something autoimmune going on. I've been researching CNS Lupus for a while and although I've only had one positive ANA, I do think that could be a possibility.

I'm just stunned to realize how completely ambiguous medicine seems to be. I guess I was living in a fairy tale world... I actually thought that when you have medical issues, you see a doctor, get tests, get diagnosed, then treated. HAH, was I ever soooooo wrong. This undiagnosed limbo is a form of emotional torture. I'm sure I'm not the first to ask "Dr. House, where are you?!?".

Sorry, had to vent. On that note, I hope I'm not being too insensitive. I do realize that no diagnosis (however hellish it seems to me) is a world better than the devastating diagnosed that some of you guys have received. I will cease and decist with my pity-party and say prayers for each of you. If I've learned anything in my 33 years, I am thankful for this moment and all that's in it. God Bless - Amye

 

[ValRunk]

Dear Amyecpa:

I was diagnosed with PLS in 9/2009.