Looking for ANSWERS?

[violetivy]

Hi, I am 38 year old female. I have posted weeks ago about my situation, but now I only have more questions. I am still waiting for my neuro referral from my Dr. My symptoms are all over twiching, ALL over. My muscles burn after just walking up steps . I can't exercise anymore as I start sweating right away and get fatiqued. I have night sweats with some muscle cramping day and night. Some days are better than others, but this has been going on for six weeks and I'm frightened. I have all these symptoms and they have to mean something. I am so fatigued all the time and can't work or take care of my daughter. I take Xanax to help with the twiching, and it does take the edge off, but doesn't get rid of them totally. Today the twitching is in my lower jaw mostly - that's a new one. I don't know where to turn or what to do. ONe question about twitching, someone said it's not a key symptom for diagnosing ALS, but from what I'm reading here, often times that is what the patient initially presents with. I can see mine, but not all the time. I also feel like there are creepy crawlers on my head. My question is, does this sound like ALS? Thank you for your time. It is greatly appreciated.

 

[violetivy]

I might also mention that my legs get jelly-like at night because they are tired. I feel so racy and nervous most of the time, too.

 

[rose]

Violetivy, (love your name!) I do not know what to suggest, I know its hard to wait for the referral and appt. Some of the things you describe, such as the creepy crawly feeling, and limb sweating I think (but do not know it) go along with some autoimmune conditions and MS. They are not something that is associated with ALS. As far as you saying that you've read that many here on this forum started out with twitching as a first symptom. ~ This is the not case for those that actually have an ALS diagnosis, there are many that came here because of twitching, but they don't have ALS. It is a very small percentage of the population that starts with twitching first. Not only is it not a key symptom in diagnosing ALS, it is not even used as part of the criteria to be met for exploring a possible ALS diagnosis. As you have many other symptoms that point away from it, you should be highly encouraged. Good luck to you, I hope you get that referral soon.

 

[violetivy]

Thank you, Rose. This seems to just happen all of a sudden, so it's hard to know what the next steps for me are. I just made a last minute appointment with my dr. and i'm going to demand a neuro referral in person.

I see that you are a steeler fan! I am originally from Pittsburgh area, went to Pitt. I now live in NYC, but am still the biggest Steeler fan

 

[violetivy]

I would also like to mention that I love your name as well. I named my daughter Isabelle Rose.

Off to the Dr.

Thanks for much for your response.

 

[ktmj]

v,

I normally don't recommend this, but check out Isaac's Syndrome or Neuromyotonia. That one can be very aggravating, but typically is not debilitating and is definitely not fatal and has some beneficial treatments. IMO your symptoms much more closely resemble something like that than ALS.

You know, of course, we can't diagnose you. Just trying to get your focus off ALS because it does not sound like it.

Best wishes with your doctor journey - many here know it all too well.

 

[violetivy]

I just got back from the dr. he said i definitely need to see a neurologist and get an EMG (are they painful?), and mri. he said they would need to rule out als, ms..etc. I am upset because i have a little girl with autism and she needs me. anyway, i am calling to make an appointment tomorrow. hopefully they can fit me in this year (i live in new york!). thanks. I know i can't stop worrying, but this board makes it a little better.

Thank you.

 

[violetivy]

Oh, the dr. also said that i have hyper reflexes?

i will check out isaac's right now. thank you.

 

[Zaphoon]

violetivy,

EMG's are performed with small, sharp needles that feel like a pin prick when placed in your muscles. Not really painful.

 

[violetivy]

Thank you. I will take your word on this

 

[lovelily]

Hi violetivy...sorry for your symptoms. It's probably best to get a referral to see a neurologist, if you don't have one already. It makes your symptoms more legit.

The best to you, as you search for your answers. Oh, and don't mind 'zaphoon' about his upright honesty, on testing! He is a very helpful member, and fun guy~maybe next he'll tell us about his prostate exam. ;-)

 

[brendapals]

violetivy,
I've been absent a few days from the forum, but I wanted to jump in and say hello. and also relax.
I wish you all the best getting in to a neuro and finding some answers,
take good care,
brenda

 

[violetivy]

hi ktmj,
I just read all about Isaac's syndrome. Wow. It sounds like me. I will bring this up to the neurologist.

THANK YOU for pointing this out to me. Another possibility for sure.


-v

 

[lostinlouisville]

violetivy

Hi, I have alot of the same symptoms you do, After a year of Dr's they are leaning towards MS. I also have a child with Autism, He is one of my 7 children and I know how a mother worries about their kids when she gets sick. Please relax, Everything will be o.k. I am praying for you. EMG's are not that painful, just a little uncomfortable.

Renee

 

[violetivy]

Thanks. I have to say that I'm a mess right now. Going back and noticing things that I didn't notice before. A horrible pain in the foot that no one could diagnose. A horrible cramp in the back of my lower right calf, which I thought was a result of me not able to walk well on my foot, but now I wonder. Also, the fact that months ago I had to stop my regular exercise routine because I couldn't keep up anymore. Then the holidays came and when I went back to the gym (after a month), that's when I noticed the symptoms all at once.

I am a mess, I have to say.