Status
Not open for further replies.
Lori - you and I think a lot alike! I believe 100% that we have to be our own advocates and definitely not be jerked around by the docs.......like I was for a year and eight months. I had two negative EMG's, neither showed that I had myopathy. I think the first one was too early (the first week of symptoms) and the second one, done by a resident, was one needle stick!

What really bewilders me, and other members I have spoken to, is that we know the criteria for ruling out these diseases, but why is it that some of us have some tests, but not others and others have other tests, but not too many of us ever get the full list?

I had to beg for the tests that I did get and I have to date never had a spinal MRI or x-ray other than my neck, never had a 24 hour urine for heavy metals or poisoning, a myelogram or the high resolution test. I know for a fact there is something terrible going on in my back, since I can no longer sit up straight and I can feel the burning pain. I also have a lump in the back of my neck, but because the size of it fluctuates my gp doesn't think I should worry about it. Imagine, not worrying about it!

The docs tried to make it sound as if this was all in my head and as soon as I left their little network, went out on my own to a neuromuscular clinic (thanks to this forum) I got my biopsy and diagnosis. I still have many questions and they still don't act like my condition is any big deal, but at least I am getting the treatment. I really love it when they tell me how I feel and how I couldn't possibly feel.

Sorry for spouting off, but you are so right and you're wonderful for making sure they didn't miss something with Timothy. Do the same for yourself too. ~Leslie
 
Lorie, thank you for that thorough list of diagnostic procedures. That is exactly what I spent weeks trying to figure out when my dad was first diagnosed, had they done everything possible to rule out other possibilities and what results pointed to ALS. That list should be printed in a brochure for potential PALS along with a clear explanation of the disease process and the symptoms to be aware of for other diseases that mimic ALS. Holly
 
We Are Not Stopping Now!

WE ARE NOT STOPPING NOW! NO ONE SHOULD!

We, most of the time, get treated like numbers. Thats why I wanted the Specialist that Researches to see Tim. I had to convince him, he didn't want a conflict with Tim's ALS/MDA Doctor. The only reason we see him is because of MDA benefits. But he also said he would not turn Tim down. I am getting our M.D. to make the Recommendation for Tim. Thank God for Doctor's like her! She is wonderful. She knows my history and now that she sees Tim. There is nothing she wouldn't do for us. All I have to do is ask.

Don't forget about the LYME Disease Test that should be ruled out. It mimmics ALS.

Also, through the Specialist/Researcher I seen week before last, He wan't's my other Doc. to do a Thyroid Test ,Magnesium and Calcium test. I didn't realize until I started reading up on Throid after my visit, that it can cause Muscle Twitches and Cramps/Atrophy. Depending on the type you have and how far it has gone. But there is Treatment. Right now, as usual I am just waiting on them. The Doc. seen even though my EMG/NCV came back better than normal. Last August it was not Normal. But, I still have the sam symptoms. He knows I am not "Crazy". He didn't tell me what to do, He is telling the other Doc's what to do.

I get frustrated just knowing it took them 7 years just to suspect Tim had ALS. thats why I am going all the way, non-stop untill all test are done.

I listened to an Ear Specialist four years ago, I had four ear surgeries that turned my head into something horrible. I had shigles virus in my right Ear, Suffered with Sever Pain. The first surgery, left me with a High Pitch Sound in both Ears. I barely can hear out of that Ear. It turned into Menieres Disease with Vertigo. He told me before the Surgeries "I Would Be Just Fine"! Then he did every sugery he could think of to get rid of it. Yeah Right, I am now living with his "Just Fine".that was very,very hard to do. And still is. It never goes away. That is just an example of what Highly Recommended Specialist can do for you!

We all have to stick together, Make sure that we get the best care for our Loved Ones and Our Selfs.

Stay Tuff Leslie and all my other Friends!

I Care About ALL Of Us! PALS and CALS!

Lorie, Sorry this was so long!
 
Status
Not open for further replies.
Back
Top