Question for Jamie

[Pythia]

Thanks Cindy,

Its nice to know that I am not completely crazy! I hit a point of overload; I can logically understand that all doctors are not bad and some of them even know something but I have just gotten so angry and frustrated. I don't think my GP would very much like to see me in the mood I have been in :twisted:

 

[Jamiet]

Tom,

Have you been checked for lyme by western blot. Your issues don't sound like ALS, but you sound like alot of people who have lyme and or some other chronic infection of some sort.

 

[TomR1972]

Jamie

I have been tested three times, I know one of the tests was the western blot but none were through that Igenx lab that I have heard bad things about. I keep getting told that tics in California don't carry lyme disease. I have been in areas with tics and always check my body good for any on me. It says they must be in you for at least 24? hours i think? If so there is pretty much no way that could have happend. I am leaning more at time to not having ALS, but then again I keep reading those strange cases and feel like I fall right back in.

I am going to a neuro specialist at Stanford tomorrow. Probably just a consultation but we will see where it goes.

I am under the impression that once weakness starts it doesn't get better.... I have progressed but old problems have gotten better.

Jamie, I probably read like you do on the net for anything related to what we might have. I am not finding anything that makes much sense for my symptoms.

I know the one caviat to this is that my wife is a vet tech and she has found tics on her and in the car from dogs that were brought in.

I have been fishing and camping in Cali where there have been lots of tics, but I am really carefull to make sure I have nothing attached to me.

How have you been doing Jamie? Still taking the lyme medicine? Any better? How do you juggle work/family with all of this. I am not that bad off at all compared to others but it significantly affects my abilities. My thoughts are with you and others who continue to fight. There was an annoucement the other day about a company who claims that a cure is around the corner. I have yet to make much sense about this claim as there seems to be a few like this each year. Let's hope they are on the verge of something great and that it can be fast tracked.

 

[Jamiet]

Still on meds, no change.

Something new, i'm positive on the hoffmans sign. I had my wife watch. i did it about 10 times, i showed her the video off the internet.

Well, the chance of me having lyme i would say, is about the same, as me getting hit by a mack truck while driving Jeff Gordon's (My favorite NASCAR driver's) car.

I may not have ALS, but i got something not right here folks...

Out for now,it's 5:00, i'm thirsty for a Bud Light, even thought i can't drink one..

over and out

Jamie

 

[brooksea]

Jamie,

Sorry you have no change on the meds you're taking.

the Hoffman's sign indicates upper motor neuron involvement correct? Is this the first time it has been positive?

I just don't understand why some are diagnosed immediately and some take forever, not that I want anyone to be diagnosed with ALS mind you. I feel bad for y'all having to go through all this crap just to find out what is wrong!

 

[mamaoftwo]

Jamie - how on earth do you home test for Hoffman's sign. Isnt that as tough as trying to do a home babinski? I have no idea how to do it far less how to read whatever I see. Probably just as well. Perhaps it is something to consider. Maybe you cannot do these tests to yourself. I dont know. Hoffmans is the finger one right? They all confuse me so much. I have all these tests repeated every time I go but I never ask what they see. Dont want to know...I believe it is called sticking one's head in the sand!

 

[qualitybabe823]

Hello everyone ~ My husband is going through the same scenerio as all of you who are undiagnosed. I totally understand your frustration with the doctors I have had my own personal issues with them, but I also understand this is a very hard disease to diagnose and may come across as doctors withholding information or mistaking information, but they need to make sure that all of the information from your bodies have presented themselves before making a final diagnosis of a life threatening disease that has no cure. I say this because everyone reacts differently. Hopefully, most people will turn to their families for love and support and fight with every ounce of their being, but there will be a person who just cannot mentally handle it and make irrational decisions, so it is imperitive to get this right. It is definitely not easy for them to give this diagnosis either, so they want to make sure they are correct.

I definitely know that some doctors are jerks, but for the most part, they really do care. I work for doctors and believe me I hear in their voices when they dictate a terminal diagnosis for a patient or have a death of a patient. They too question "what could I have done differently." The "God" persona that some give us is just a coping mechanism for them too. Who wants a crying doctor when you need someone strong to support you and find the answers.. that's why I'm not a doctor. We have dealt with some awful bedside manner, but for us our anger/frustration is with this disease and not the doctor. They cannot help it if all of the pieces of the puzzle from our test results don't fit. They have to diagnose us from the information they put together, which is the best that they can do.

I don't know at what stage of an illness that you are, but hopefully you are all still able for the most part to enjoy your life, interact with your families, go to work, enjoy your hobbies, etc. We could get hit by a bus crossing a street tomorrow... we don't know, but we have to try to enjoy what time we do have here with our loved ones and try very hard not to let our worrying rob us of that. Believe me I know how hard this is. Even as I am writing this, I also wonder if I have 6 months, a year or 20 years left with my husband and what will he have to endure, but I know that tonight we will have dinner together, laugh, maybe go out and get ice cream, and watch Friday night TV. We have to live in the now and the now is what we do know which is... yes something is wrong, but he is still alive with us and we have to do our best to cope with what we have.

Please don't be angry with me for trying to give us all a pep talk and show that there are 2 sides to this awful process of diagnosing. I just want us all to enjoy this weekend and try not to dwell on the negative.

My best to everyone.
Pam B in Va

Thank you for the pep talk, it's so easy to let ourselves go and dwell in the fear that is ALS. It tends to take over your every thought. WE do have to remember that there is the now and enjoy every minute of it while we can. If it is ALS, it will rear its ugly head soon enough and then there will be plenty of time to mourn. I myself needed this pep talk and I appreciate it. Thank you again.