What do I do next?

[ash-rc]

Hi,
I am a 20 year old female who has been suffering symptoms, that, from my research are scarily close to those of ALS. I just want some insight on what would be a good decision for me to do next.

It started about 4 months ago, I will list my symptoms in progression
- awkwardness walking in right leg
- pain in right leg only when active
- widespread, small, short twitches
- pain and weakness in right shoulder (unable to "scrub" things)
- extreme fatigue
- weakness over entire right side of my body
-strong hand cramps/atrophy of right hand
- uneven shoulder muscles (comparing right to left, atrophy of right shoulder)
- twitching of tongue
- weakness in tongue
- longer, stronger twitching in back, shoulders, legs (now i can watch it happening and see my muscles moving.)
- throat twitching and weakness, trouble swallowing, hoarseness in voice.
- Weight loss ( I'm 5'3'' and went from 104lbds to 95lbs in a 2 week span.)
(there are many more, small things)

I went to a neurologist to be examined. He noted abnormal (hyperactive) reflexes in both my legs and my arms. I got blood work done- everything was normal. No vitamin imbalance, no lyme ect. I had an MRI of my head and neck- which came back clear. He then ordered for an EMG. He tested about 6 muscles total down the right side of my body. He found no abnormalities and told me, from that, he had ruled out ALS.

I hate to say it, but I think he ruled it out so easily based upon my young age alone. Before he even did the EMG he told me "this is going to turn out normal- with no abnormalities." He had it in his mind already. My condition is quickly getting worse. I want to, more than anything, have trust in my doctor that ALS has been ruled out, but I don't. I went in to get a second opinion, and she did not even note my very, very brisk reflexes. All she wants to do is take a second look at my EMG results from the previous doctor, and base her conclusion off of that- I feel. I'm not sure where to turn now, and I have strong belief in catching any disorder or disease, even terminal illness, incurable or not- early on.

Where, and what do I do now? I don't to just "wait it out" until it is absolutely obvious that I have the condition- until time for any kind of drug trial or research is cut short.

Can anybody give me some advice?

 

[notme]

Hello

First, with atrophy, if it's truly there, something would have shown up on the EMG. LMN issues always do. LMN issues are genaeraaly the cause of atrophy, I believe.

UMN issues don't always show on EMG...but ALS requires both UMN and LMN issues. Clean EMG normally means no ALS. What did the first doctor say about the brisk reflexes? And the atrophy?

There are literally dozens of conditions that cause body wide issues like you describe. ALS can move very fast, but it's very unlikely that it would affect only one side of your body. It normally starts either in the bulbar region or in the distal muscles...hands or feet. There are conditions which can start in the proximal muscles, though.

Brisk reflexes alone are not enough to say UMN. UMN also causes spasticity, Babinski, and other assorted things...none of which you mention.

Your age does make ALS unlikely, though not impossible. It's your description of symptoms that make ALS very, very unlikely. It's fast, but not this fast.

I'm not saying something can't be wrong, but nothing you've reported here screams ALS. Read the sticky posts. I'm not sure why everyone believes twitches mean ALS. The twitches in ALS happen when the muscle is dying. The EMG would have shown muscle death.

You also don't report any loss of function. If you had ALS with all the areas involved that you suspect, you'd be severely disabled by now.

What leads most with ALS on the search for answers is a loss of function in a body part such as a hand or foot. For instance, I came searching for answers because I lost the use of my left hand, followed by atrophy when the muscle died.

Good luck to you. Stop researching rare diseases and let the doctors find out what's wrong with you.

 

[trfogey]

Have you considered looking at benign fasciculation syndrome (BFS)? Your symptoms, as you report them, sound very much like those of BFS. Try reading the forum at a b o u t B F S dot c o m. You'll find a lot of folks with experiences similar to yours.

 

[LifesWorthLiving]

This sounds like bfs.....read my threads, they may help...

 

[wright]

Your neuro told you that you don't have ALS because you don't. Your brisk reflexes are symmetrical, which isn't considered abnormal in the absence of other pathological reflexes. You don't have muscle atrophy because it didn't show-up in the EMG. The progression of your symptoms is too fast to be ALS. Nothing in your story would cause anyone to think you have ALS . . . because . . . well, it just doesn't.

You're now questioning a trained neuro about his/her diagnostic abilities based upon your internet "research." You're 20 years old, which tells me that you might be a sophomore in college at best. Let me tell you what that neuro had to go through to become a neuro:

He/She went to college for four years and very nearly had nothing but A's in all of his/her classes to even be considered for medical school. He/She then took the MCAT (which is the hardest standardized test you can take) during his/her junior year and had to score very high on it to even be considered for medical school. Then he/she had to apply to medical schools where they were competing with literally thousands of other students in each of the medical schools they applied to. Then they had to be one of only 100 students that was accepted (the best of the best).

Once they got accepted, then it was another four years of medical school, where it is mind-boggling hard. After those four years of hell, they had to apply for residencies and match into some hospital to get further training. Then he/she had to get through residency (for a neuro, that is a minimum of another three years and more than likely at least four). Then if your neuro is a specialist, it's even more training. Then after all of that, they can finally see you as a physician in their own practice.

Now compare that to your 15 minutes of internet "research." Are you still going question his/her abilities?

Bottom line: RELAX and let your physicians determine what you have. From what you have shared, it doesn't sound like anything serious.

 

[Ms. Pie]

To gain weight, eat 3 meals a day.