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jpsugar123

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The neuros said that because nothing showed up in my mom's antibodies test that she has ALS. I don't know, maybe I'm in denial but I don't believe them. They took the antibody test back in January when she just had plasma apheresis AND was on steroids for 2 months already. They are soley basing their decision on that f-ing antibody test that could of been wrong due to the plasma apheresis and the IV steroids (solumedrol). We are thinking of taking her to the NINDS in Bethesda, MD. Is that a good place for a second opinion OR should we take her somewhere else that is better than that? Please help us!
 
Was this an antibody test taken from the serum of the spinal cord or what? I was not aware that there is such a definitive test for ruling out ALS using antibodies.

I haven't had time to read all of your posts regarding you Mom, but has she been seen by an ALS Clinic doc?

I'm so sorry y'all are going through this terrible situation. It really saddens and frustrates me to read the stories of people that sit in limbo waiting for a diagnosed. My husband and I were "lucky" in that he was diagnosed immediately. :-?
 
The neuros said that because nothing showed up in my mom's antibodies test that she has ALS. I don't know, maybe I'm in denial but I don't believe them. They took the antibody test back in January when she just had plasma apheresis AND was on steroids for 2 months already. They are soley basing their decision on that f-ing antibody test that could of been wrong due to the plasma apheresis and the IV steroids (solumedrol). We are thinking of taking her to the NINDS in Bethesda, MD. Is that a good place for a second opinion OR should we take her somewhere else that is better than that? Please help us!

I'm so sorry that this was put to you in this manner! Absolutely go to a second opinion! The steroids can skew any sort of antibody test.. plus, some have autoimmune or inflammatory disease without producing the antibodies.

As for the NINDS, I don't know if you're referring to NIH, but if you are, from what I understand, all one needs is a letter from their doctor stating that they need to be seen there. If accepted, all medications, tests, etc are without charge or very little cost. This is only what I was told, but it is a reliable source.

I've been very happy with Johns Hopkins in Baltimore. It also would be an excellent choice for a second opinion.

Good luck to you!
 
They took her antibody test I believe through her blood. But it does seem odd that this doc would say it's ALS (the ALS foundation people were in her hospital room yesterday along with a social worker) soley based on that test. Also, that test was done in January from a different doc. This new doc didn't even run new tests! She also sent her "people" to tell Mom and Dad yesterday instead of showing her face. What kills me is that mom doesn't show ANY UMN signs and I called the new doc on it. I asked her last week about that and I grilled her about some other things until she left the room all flustered and hasn't been back since. (I'm on to you b*tch is what I'd love to tell her). I am just so freaking MAD right now! I wish that my mom's mylein sheath would grow back and she could walk into that office in a year and say, "look at me now!". I also think it's wierd that the OB/GYN that took out her left ovary Labor day weekend has an office right across the hall from her GP. Her GP referred her to the first neuro who said it was something with conduction block. He in turn refers her to this new chick. It's like they're all friends and I think they're hiding something about her ovary surgery. THe minute mom woke up she was covered in bruises from her neck to her butt. She was SO sick afterwards and ran a low grade fever until November when the doc put her on Solumedrol in the hospital. She also had a consistantly high white blood cell count(well over 10,00 and as high as 18,000). SO this is all very suspicious to me. We ask each doc about if the ovary surgery could of messed her up and they're all quick to say NO. I'l keep you guys informed because I feel like no one understands me like people who are going through this too. Stay strong!
Jessica
 
I have been diagnosed with ALS, but show very little UMN signs also. I was told that either it is ALS and these symptoms will eventually show up, or I will plateau or improve and then we can go back to the drawing board as to what it really is.
 
I got the name of that antibody test finally. It is called the paraneoplastic antibody test. Also, looking through 200+ pages of medical reports from one doctor I discovered the her cerebrospinal fluid IgG is elevated and so is the albumin levels, but the IgG index is normal. She also has two oligoclonal bands. Her CSF proteins were a little high. This just isn't adding up.
 
Dear Jessica

Just wanted to let you know I am praying for you, of course your Mom, and your entire family.

I am not a doctor, nor can I interprete test results, blood work, or any such medical result. But I do know how many years it takes to complete medical school then to do internship, residency and sub-speciality to be a neurologist.

Your mother has been through so much and any child, no matter how old you are, wants to see her get well. It is so very difficult with this stinking ALS to accept that it could be a possibility. My sons, 34 and 30, were determined that my husbands condition was not ALS. We sought out the best neurologists and they all said ALS.

The only thing that helps me to cope or to understand anything about this, is to pray. God is there Jessica. Reach out now when things are so very hard and let Him do the rest. This is too big for you to handle. Love your mother and be there is any way you can to support her. The anger needs to released and give yourself a break honey.

Will be praying,
Patty
 
So sorry

I am so sorry about your mom. I know that antibody test has to do with cancer. Some cancers can cause neurological symptoms that can mimic neurological disorders. For instance certain lymphomas can present with ALS symptoms. Paraneoplastic antibodies are caused by either cancer cells or from antibodies our body makes to kill the cancer cell. It sounds like your poor mother has two different things going on. Some doctors would have waited a long time to make sure that her other health problems were not causing the neurological symptoms,,,, in turn delaying diagnosis and care. When i first saw an ALS specialist he was very concerned about my other health problems, like for instance i get nausea and vomiting for no reason and i ended up in the hospital for dehydration. They kept me at the hospital because my white blood cell count was 17,000 and i had no fever. Just abdominal pain.. The cat scan was fine, and after not eating and getting fluids for 48 hours my blood count went back to normal and they still do not know what caused it. Because i had all these other health issues my ALS doc is trying to chalk it up to something else and my Internal doc is quite adimittent that the muscle issues is neurolgical.... I could not keep up with my job and lost it, then i lost my health insurance..... So now i am still sick with no help... I still see the ALS neurologist but no help. I am so sorry about your mother, and believe me i have lost a lot of respect for some doctors... But from what you wrote about the tests it sounds like they have really tried hard to find a different diagnosis and this can be hard for them to deal with too. They need to sit with you and answer questions you have even if you are upset, that is part of their profession....
 
Myelin Sheath

What is wrong with your mothers nerves? Myelin sheath is destroyed from our immune systems... Like MS. In ALS your myelin sheath is usually normal. After a lot of reading i liken it to this analogy...... Their are people, (Axons) a car (signal), a road(Nerve, myelin sheath) and the destination (muscle.) In MS the road is all broken up with scar tissue and such which makes the trip impossible leading to pain and muscle disturbances and ultimately wasting. In Muscle disease the people and car get along the road just fine but when they reach their destination the muscle is all jacked up. In ALS gradually there are less people that come along for the ride. In the end the car gets along the road just fine, it gets to the muscle but there are no people (Axons) there to feed the muscle.
 
Hi Jessica,

Did your mom get an EMG/NCS? I never saw a note about that. Peg
 
Emg/ncs

My mom has had many a EMG and NCS. The latest one showed that no signal was coming from the nerves, but sensory was intact. I do know that upper motor neuron signs were fine, just her lower motor neurons were not good according to EMG. It's hard getting info from the docs.
 
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