A Month of Tests and Appointments

[sjventures67]

In the last month I have a had a blood test to check my CK level and I also agreed for them to take blood to test to see if I had a defect in chromosome 9 which has been attributed to the familial form of MxD/Axs.On Monday I also had a MRI scan of my brain and which they also injected a dye into me for more contrast.They had. Booked an appointment for me to go back to the hospital in July but today I got a text asking me to return to the hospital on the 20th feb to see the Neurologist.I still twitch and have pain but 2weeks ago I went away to Bulgaria with my kids Snowboarding and managed ok but didn't push it.I am aware that they have been looking at using MRI and blood test for an earlier diagnosis so maybe this is it for me.I will let you know what happens on the 20th if I am in a fit state to do so.

 

[Jujulee]

Good luck Steve... I hope it's nothing bad. I'll be praying for you.

 

[Gloria123]

I'm sorry that you're dealing with this Steve. I can't imagine how nervous you must be, and I'm amazed they wouldn't give you any information (like the results of the tests, and why they are pushing up the neuro appointment).I will pray for you as well, and am hoping you can get through the next 10 days without much anxiety.Mitra

 

[DesertKnight]

Steve,I went back and read your old posts. All I can say is you've really been through quite a bit. I'm so sorry you're still waiting to get definitive answers. I pray you will receive good news at your appointment and that you will have peace in your soul as you wait the next 10 days. Hang in there!Frances

 

[SimonaStar]

I understand his post I can not speak English!what happened?@Crissi: Sei so lieb und schreib mir mal was die bei dem untersucht haben?Ich kann doch kaum englisch I pray for you too!!!!!!!!!!

 

[SparkySunshine97]

My thoughts are also with you, best of luckRegards Martin

 

[sjventures67]

Hi Steve,I've just read your posts as well. Prayers and thoughts are with you mate. Good luck for the 20th Pete

 

[twitchplaysp]

Your prayers worked wonders.The neurologist had called me back to give me the results of one of my blood tests.The CK level was 201 which in his words was the high end of normal.If there was something more serious going on it would be 600/800 even up in the thousands.He also discussed with me that the test for the mutant chromosome 9 is not ready for at least 12 months and it is only used for research purposes.He also discussed whether it would be of any benefit knowing that I had this fault and an example he gave me was that some time ago they started testing for huntingtons disease.he told of an example when 2 brothers were tested,1came back positive and the other negative.the brother who tested negative committed suicide because he could not cope with the guilt.This I believe was not an isolated case so whilst having a test would help in the diagnosis it offers no benefit to the patient if there is NO treatment,it just confirms that you are going to die.Anyway I have got go go back in July but in the meantime he is referring me on to a Rheumotologist fot the muscle and joint pain.The brain MRI report was not bak but he did show me the scan which showed a few white circles that the Neurologist expected to see in a scan of someone my age.

 

[SparkySunshine97]

That's great news! And even with your family history of ALS, your chances of not getting ALS are far better than 50%. Your symptoms are a classical example of BFS (anxiety first, then twitching and nothing else that could point to ALS).