Scared that I might have als

[Possum]

My symptoms started with weakness in my left hand, in October of 2013. Then later that month I started getting twitches on my left side that continues 24/7. Whole left side is weak, like I've had a stroke,but ER visit with MRI of my head showed no evidence of a brain bleed. Since that I've gone to 2 nerologists and one Nero specialist at the cleveland clinic. Dr Wilson at the cleveland clinic has ran multiple tests. Blood tests, nerve tests,tilt table test , and even a skin/nerve biospy test by punch biospy(which I don't have results back yet). Pretty much all the tests came back ok except the tilt table test. It showed I have POTS. posteur orthostatic tachacardia syndrome. Which basically means my heart rate and blood pressure goes up due to blood pooling to lower extremities and the heart having trouble getting blood back up to upper extremities , which symptoms of dizziness and light headed happens upon raising from a lying. My walking, dressing and trying to work with both hands is getting harder to do. Even getting out of bed is hard. I work as a caregiver in a hospital so I'm used to taking care of patients, not being one. Dr put me on one medicine, mestinon. It's supposed to give energy to your muscles but I haven't seen improvement with that. I see the dr again for the second time since all these tests next week. I'm scared that I might have als.

 

[Mediasmart]

Since that I've gone to 2 nerologists and one Nero specialist at the cleveland clinic. Dr Wilson at the cleveland clinic has ran multiple tests. Blood tests, nerve tests,tilt table test , and even a skin/nerve biospy test by punch biospy(which I don't have results back yet). Pretty much all the tests came back ok except the tilt table test. It showed I have POTS.

Cleveland Clinic neurologists usually don't miss ALS with all the test. I always wonder why people put themselves through this angst. A positive "tilt-table" test isn't on the list of ALS symptoms but what do I know.

 

[Possum]

Thank you for replying... I am 44 female with two kids and a husband. I am also having muscle crams in different areas in my body ( worse when it's in my abs) . What is your symptoms? Did you figure you had it before hey dianogis you? I so hope it is anything else but that! I am very anxious and emotional about all this

 

[Nikki J]

Did you have an EMG ? If so what did it show? Does your clinical exam show upper motor neuron signs? After seeing 2 or 3 ( I am unclear from your post) neuros if they are entertaining MND at all I would expect an EMG?

 

[Possum]

Didn't have a Emg test. They did do what's called a Qsart test with normal results and then did a test where they sent electrical currents into my arm with sensores all over my head to read the results of the currents(don't know the name of that test).

 

[Nikki J]

It sounds like your neuro is looking in a totally different direction than MND based on their testing so far. Did you ask if ALS is in their differential? Try not to focus on ALS. Make a list of questions for your next visit and include your concerns but find out where the neuro thinks this is going

 

[Possum]

Scared and want to be back to normal

It sounds like your neuro is looking in a totally different direction than MND based on their testing so far. Did you ask if ALS is in their differential? Try not to focus on ALS. Make a list of questions for your next visit and include your concerns but find out where the neuro thinks this is going

. I am having a hard time getting my left hand to have any dexarity and picking up things. My left leg has foot drop and I have twitches 24/7 on my left side. I keep getting Charlie horse like cramps in several places. This all has taken place since October 2013. I'm a 44 female who is afraid I have Als? Anyone have any advise?

 

[Dusty7]

"Anyone have any advise?"
Yes, stop worrying about ALS. As Media said, Cleveland Clinic is not likely to miss ALS, especially when the test indicate a problem with the Autonomic Nervous System, not the motor neurons. On the grand scale of things, it sounds like all they have found so far is POTS, and the prognosis for POTS is generally good. (Not like ALS.)

The neuros--the experts--are looking at your sympathetic nervous system, not your motor nerves. Let them see what they find... and in the meantime, stop worrying about completely unrelated diseases.

 

[Clearwater AL]

Dusty7 has given you good advice.

 

[Possum]

Do I have als

Does als usually effect same side of body? I have weakness and twitching on whole left side of body! Could that be als? Been happening since October...nonstop! Please tell me your story...

 

[Nikki J]

Please keep to one thread it is hard for PALS to go from one thread to another. This belongs in the DIHALS section anyway. I have merged your threads for the above reasons

 

[Possum]

Not sure how to work to work this ...tried to see if anyone replied to my posts and couldn't even find my blog to see. I'm not too computer savey. I was clicking on new posts and didn't see my post and didn't know what else to do...feeling lost

 

[Nikki J]

If you go to your profile and look under statistics there will be a link to your posts
You can find your profile by clicking on your username in top right where it says welcome possum

 

[skipper66]

Possum: You should direct your questions to a qualified md and not us. We told you more then once that your symptoms don't resemble ALS. That is all we are capable of doing. Keep a record of all your symptoms and went they occur and present them to your doctor. Then relax and get off the internet and spend time with your family. You are just causing yourself unnecessary anxiety. Good luck to you. Kim