New here/Scared here

[twinmommie72]

Hi everyone...I posted here about a month ago scared my diagnosis would be ALS. Friday August 6th, I was diagnosed. Still in shock...:-( I started out with a few words coming out kinda weird then one of my clients asked if I were intoxicated because of the way I sounded. It started the questions in my mind, then off to the internet I flew trying to figure it out. I typed in "38 and ALS"...The article came up that it was impossible and it set my mind at ease for a week or so. It continued to worsen so off to the Neuro here in my small town I went. They did a spinal tap/MRI and he said it was all normal and all of my symptoms were in my head. Also I needed to "grow a backbone" and reduce stress. I asked for a copy of my records and could clearly see that the spinal tap was flagged with high amounts of protein. After seeing a great Neuro in Richmond then at Duke it was confirmed. How dare the Doc here in my small town tell me it was in my head...

So...Here I am. Frightened...:--(

 

[stilljennifer]

Welcome to the "in your head" club. I am being told I have PLS or SMA or MSA now.... after two years....but that it is definitely upper motor neuron related now... before I was even told I might have "conversion" (pretty much the in your head stuff) disorder... So the last few times at my neuro's office weren't too pleasant (for him, not me ) when I asked if he still thought it was all in my head he said, "definitely not".

I'm so sorry to hear of your diagnosis. I hope they are wrong I see it says twin mommy... how old are your children? what are your other symptoms now? How long did it take to get a diagnosis?

 

[handinhand]

Hi, welcome to our little corner of the world...smile! I am sorry that you have all this going on and really sorry you have a dr that is not very considerate of your feelings. I can't imagine how awful that can make you feel? I hope and pray is is something else than ALS... You are in the company of many who can help you along this journey.....we were all scared to death hearing this kind of news. You will still have lots of living to do, just start planning more of the things you want and start living every day...big hugs to you, Linda.... We r here for you....

 

[John1]

Hi twinmommie,

I am sorry your fears were confirmed. You will find lots of help and support here. I am a bit confused by part of your post though. You imply that the diagnosis was based on the "high amounts of protein" in your spinal fluid. Spinal taps are only used to identify non-ALS explanations of your symptoms. They are not used to diagnosis ALS except in the sense they can exclude other possibilities. In short, the high protein content is not related to your diagnosis. Have you had an EMG? It is the most useful tool to confirm a diagnosis.

-John

Hi everyone...They did a spinal tap/MRI and he said it was all normal and all of my symptoms were in my head. Also I needed to "grow a backbone" and reduce stress. I asked for a copy of my records and could clearly see that the spinal tap was flagged with high amounts of protein. After seeing a great Neuro in Richmond then at Duke it was confirmed....

 

[twinmommie72]

Hi there...Im sorry that statement was misleading. They did do 2 EMG's that showed "worrisome for ALS". They did a series of blood work that they have sent off to Hopkins and other testing centers. He mentioned possible "copper defiecny" or AIDS/HIV or even Auto Immune disorders. I just dont understand how we got here...with ALS. Im just so scared. My twins are 3 years old...Im not ready to leave them. So much left to do...So much.

 

[jemahiser]

Twin, I was mis-diagnosed for 2 yrs. Finally on my second EMG they figured it out. Keep gaining all the knowledge you can and chin up. Some days it's easier then others. Take control of your own care. Make them explain every thing and ask questions. Good luck on your journey God bless.

 

[TedH5]

twinmommmie, I understand your fears and concerns. I too was recently diagnosed and it is all quite overwhelming. Understand there is no book that says how to react. We are all human so there are going to be emotional moments which is normal and frankly quite healthy. That being said I said when I was told it may be ALS before my official diagnosis that the sun was going to rise the next day and so was I. Life is far from over for you! Make every day count appreciate your family and friends and do not take the little things for granted. Life is not over, you are the same person you were before the diagnosis. Enjoy your family! I know it is all overwhelming and remember the people on the forum are always here for you but I believe it is vital to maintain a positive attitude and outlook and to lean on the power of prayer! There is life after diagnosis, remember that and live it to it's fullest. God Bless you and your family!