Status
Not open for further replies.
Hey... well, my first neuro had a crappy bed side manner when he gave me the news so I left him and found a God sent Neuro who is awesome and upfront with everything, especially since my husband does have a lot of questions for him he will take the time to explain... I see my Neuro in 2 wks for my 4 months check up and hope and pray things are alright? I go to MDA clinic too for yearly check up (My Neuro is in charge of the clinic too) I do take rilutek daily and some vitamins too... and baclofin (idk on spelling) for twitching (if needed).... Well, you hang in there... Stop freaking out...until you really have too... keep us posted and Iʻll pray your results will benefit you... Aloha :)
 
deniseannette,

Nothing's changed since the last time you were here. Your old symptoms don't point to ALS and your new ones don't either. Running from doctor to doctor and then ignoring their advice is simply a waste of time and money.

Go back to your primary care physician and start this whole process over but this time banish all thoughts of ALS/MND from consideration and discussion. You don't have it -- the neuros agree.

Most of all, do what that primary care physician tells you to do. If what's troubling you could be diagnosed by a non-medical person with an Internet connection, the experts would already have figured it out. Do what they tell you to do, take what they prescribe for you, and see what happens. If you have bad side effects from a medicine, tell the doctor that prescribed it so that they can change the prescription to an alternative that doesn't cause that side effect. Who knows, getting that side effect from a particular medication might be the final piece that unlocks your medical puzzle. But your doctor won't know that unless you keep him/her in the loop instead of running to another doctor or trying yet another herbal remedy.

And for heaven's sake, if your doctor recommends some psychological help, do it. Given that the incidence rate for MNDs in your age group is smaller than your chances of being struck by lightning in a given year and you show neither symptoms nor progression resembling those of ALS, your worry about it is based not on evidence and reason, but something not reasonable and not reality. Find out what that is and do what it takes to free yourself from it.

Good luck.
 
Deniseannette,

You have been diagnosed as being anemic. The only way to treat it is to take iron supplements. Euro-fer is simply a brand name for ferrous fumarate otherwise known as iron. (This is the form of iron that is kindest to the stomach. In other words it is the easiest to tolerate.) This is not some new, exotic, experimental therapy.

It takes months of iron supplements to replenish your iron stores. Short of a blood transfusion, there is no quick fix for iron deficiency anemia.

Palpitations are not one of the known side effects of taking an iron supplement. Anemia may cause palpitations, however. Anxiety may cause palpitations. Has no one suggested getting some psychological support in the interim? You are anxious, depressed and seemingly fixated on having a neurological solution and that is a horrible place to be. You need help that this forum can't give.

Jumping to the conclusion that you have a motor neuron disease instead of addressing the one definite diagnosis that medicine has been able to give you is makes no sense.
 
You have lyme disease or a coinfection. Look on lymenet.org., your symptoms are textbook.
 
Make sure you have your GP run labs before you start pumping yourself full of supplements, some vitamins and minerals in high doses can be toxic and DEADLY (I had low iron for a while when I was younger, then it went too high, I am not sure which felt worse).
Deficiencies in Vitamin D, Vitamin b-12, and iron can cause muscle issues.
Make sure you drink plenty of water and cut out most of the caffeine and all of the artificial sweeteners from your diet. Dehydration can cause muscle issues. There is an increase in instances of neurological disease misdiagnosis in people with Aspartame intolerance.
Also, I see that you frequently have swollen lymph nodes, that is a sign of your body fighting infection. There are a ton of auto-immune diseases that cause muscle atrophy....... and the good news is, auto-immune diseases (Unlike ALS) have treatments.
Good Luck!
 
Thank you all for you comments. I'm going back to my primary doctor on Monday. I did see an internist yesterday (I was referred). It was quite disappointing. She said that I am in fact not anemic. My iron is low but not to the point that it would be causing all of my symptoms. She tried to say in the nicest way possible that she could no longer handle me. My symptoms were not something she could handle.

I have been tested for Lyme. It came back negative. It was at a regular walk-in clinic though. If my symptoms progress. I'm def going to look into seein a Lyme litterate doc.

B12 test came back normal at 361. Normal range being 133-675 pmol/L

I'm going to look into to sleep apnea for real this time. At first i didnt want to believe that I had it but now it just seems more apparent. I've also been getting night terrors and horrible headaches. Its usually to the left side and then the pain moves to other spots. I also notice that when I'm ready to go to sleep i have a hard time breathing. I can't get comfortable. I can't breathe comfortably. Sometimes, I start dreaming right away. The dreams are disturbing and so vivid. I can remember everything. Today I felt like someone was suffocating me against my pillow. They had such a tight grip of my head. The other day I had a dream that I got into a car accident and killed my sister. The dreams are so horrible. I'm waiting for a date for my sleep study. Does sleep deprivation cause muscle twitching? I'm so exhausted and dizzy. I just want it to be over. I know I'm moving away from ALS. Which is a good. I probably shouldnt be on this board anymore, but i love the advice I'm getting and I hope its okay if I post a final diagnosis on here.

Thank you all for your support
 
Sure, when you get your final diagnosis I'd like to know what it is.
 
Status
Not open for further replies.
Back
Top