[Mikael knoth]

Bill, thats so sad about your brother, my brother for the last year of his life was bed ridden , they got him out of bed sometimes and he would just fall when he used the rollator , just shuffling along. His blood pressure would drop . It really annoys me when drs dont want to investigate what actually was wrong with him. I’m going to mayo in Jacksonville this wed, very nervous , we shall see what turns out. Hope you are doing the best you can under the circumstances.

mikael

[Mikael knoth]

Sorry to hear about your loss. Both brother and mother were first diagnosed with Parkinson’s than that was changed ,never did come up with a diagnosis. Wish i would of pushed harder, i ,lived on the other side of the country.

[Mikael knoth]

Hi Bill I’m so glad that you are a slow progress-or but it still sucks for you. This December is 5 years,i have been everywhere you could go for als to be diagnosed. Local neurologist are a waste as they will say well you been to this place and I’m not going to contradict them. God forbid i did have this i would think i am a slow progressor too . I just want them to come up with something that is feasible and that i can at least face whatever it is. I do pray for people with als,its such a terrible disease, not that any disease is good. My brother and mother died of a neurological disease that they couldn’t pinpoint. I wanted an autopsy but my family said no. Hope you continue to be very slow with this disease

[Mikael knoth]

Hi Bill , i would never ask for a diagnosis online, symptoms vary too much with this disease so no two are alike , besides anyone could reply and lets face it none of us are doctors, i have seen dr vu early on i think after year and half, and was cleared by him. The think is that my symptoms continue to get worst and each neurologist has their own take on it, i have had it with these drs. I like dr. Vu very much.

[Mikael knoth]

G evening every one, i am the original poster on this thread, in the two years since this thread i have been to mass gen to see dr. Cudowicz i am sure i misspelled her name, but she said you had more emg than anyone i have ever seen. I know als you dont have it, she said she would test me for small fiber neuropathy, how this would explain my saliva and mucus was beyond me . Walking has gotten worse for me and my muscles are now painful with my hamstrings feeling tight. Also was walking through the airport just carrying my cpap machine and could only walk three steps all of a sudden my neck and upper back had severe pain with every step i took I couldn’t go to dr right away as i was attending my brothers funeral and my other brother was having major cancer surgery. My brother who passed away from a neuro disease not sure if it was Parkinson’s , my mother had the same thing. Got back home and went to v a to have an mri after my X-ray was suspicious, i herniated 2 disc in my neck, just by sitting on a plane. Saw the neuro at the v a , she was giving me the bum’s rush, she said what are you worried is wrong , i told her als was on my mind she took her reflect hammer bang my knee and said see you dont have als. It could only happen to me, i was ready to beat her with her hammer, decided to contact my neurologist at mayo and made a appt with him for exam and emg AGAIN! They seem to get stranger and stranger . It’s been 5 years , i am completely mentally exhausted. I ‘m hoping for some clarity on this visit. Even went to a functional dr who took 15 vials of blood including some gene work and was diagnosed with chronic inflammatory response syndrome. It’s such a cluster f***. Sorry but am very frustrated. Sorry for venting so much.

mikael

[Mikael knoth]

I know that this is not als but i thought i would post the results , well the biopsy came back showing severe sensory and autonomic axonopathy , have a video appt with the good dr at mgh to see where we go from here. thank you to everyone on this forum for their support.

mikael

[Mikael knoth]

G morning Tomoko

Thank you for the great information, in my family the males never lived pass 60 from heart conditions, my sibling and i are the first to reach the age we are, me being the youngest at 67. My older brother has some kind of neurological thing going on too, that is why i am anxiously awaiting to go to mass. gen to find out. i will look  on that area that y ou told me about. so you are considered atypical but familiar? this thing whatever is wrong with me has been given me a run for it, although trying to make peace with it. thank you for your replies . I’m happy you still go to the gym and family things , we should never surrender to anything . Hoping this finds you in a good space today and lots of energy.

mikael

[Mikael knoth]

Hi Bev , thank you for the encouragement.Some of these drs are just so bad. even my gp i had to correct her about what vitamin was what and she argued with me until i google it for her, this last mayo dr when i questioned the fib i said it was spontaneous action, he said no, i brought up mayo web site where it says it. he should of paid me. for a first class hospital that just sucked. i can imagine when people are weak and tired and they have to deal with these idiots. I hope the orthotic is helping you walk with more confidence and keeping you balanced. will keep people informed of what happens in boston.

mikael

[Mikael knoth]

Hi Tomoko

Wow your als took a long time getting diagnosed, i would of thought atrophy would of been a red flag. You have very slow progression i gather since its been ten years since your first symptom. Where do you live? this site seems to be a great site to communicate with people. how are you doing right now? i think its important to know what is going on with your body .not knowing is so bad. i think i would do better with an answer to my ailment. hope all goes well with you registering .

mikael

[Mikael knoth]

Hi  Susan

Yes I am a vet. I kind of wonder why all my emg are just one arm and one leg one time they added thoracic and another added my tongue( that one was only because I insisted. I am making my way to mass general next , have been in touch with them. Dr that I’m seeing is in charge of the clinic there. Makes me mad that I had to go to a shrink because I was told this is from anxiety. The shrink advised me to Perdue it since he thought I wasn’t imagining this crap. I’m sad right now knowing they are just waiting for failure. Thanks for replying. How long did it take you from the start to be diagnosed.

[Mikael knoth]

Hi Tomoko. Sorry that you and your mom had the same condition I’m gathering you have familial als. How did yours start? I get sick of going to drs only to be disappointed with diagnosis that don’t make sense and I keep getting worse but not worse enough to send up a flag. Which don’t get me wrong I don’t want to get worse. I’m rambling as I am just frustrated over being in limbo. Never heard of the company you are signing yourself up for. Would like to hear more of your journey to diagnosis. 4 years is a long time.
mikael

[Mikael knoth]

Hi bev I think bulbar because my mouth fills up with saliva and I have to remind myself to swallow. Also nose runs while I eat. I don’t think it’s bulbar onset since it started in my legs.
sometimes I wonder if the drs are not open to things like mercury imbalance   I’ve had an mri about 2.5 years ago had a spur on  c-6

c-7.  Also noticing I sleep but stilll very tired. Will be going up to mass general as soon as they send me a date.
mikael

[Mikael knoth]

Hi Bev, sorry you have been diagnosed with one of these damn diseases , at least its slow progression and hopefully they will come up with something before yours gets any worse. . they won’t even entertain any motor disease, which i really don’t understand , i know my last omg stated a few fibs in one muscle the gluteus maximus. i asked if this was acute and the dr at mayo said no, which according to mayo info site it is acute , this was the first time i showed any acute and the damn dr doesn’t know what he’s talking about, i told him i was worried about bulbar and he replied well we tested that area in the spring and i said no you didn’t and he looked at the record , knew i was right and just answered you don’t have bulbar, very disappointed in mayo. sorry about the rant. i really need to see someone who is going to state what is wrong with me , feel like i’m going crazy wondering. thank you for listening

hugs

mikael

[Mikael knoth]

Hi  i’m truly sorry to find myself asking things, i have asked at other sites and i either get shut down or people tell me to follow through. i would post in one of the forums if i’m allowed to but don’t know which one.
nov 2016 pads of feet felt stiff
mar 2017 touching my skin anywhere below my waist makes my feet tingle
apr 2017 fasciculation’s started in my right calf (leg leg feels the straightest), in the next few months they went all over, i take magnesium so they have quieted down quite a bit
aug 2017 dealing with mucus, no allergies but it continues to this day
as time has gone on i now have trouble with saliva , my mouth filling and than i swallow it and the mouth fills up again.my nose runs terrible when i eat.
i can walk but it just feels weird, i was a runner
had a laminectomy l4-l5 in jan 2018 but hasn’t done anything
here’s the worst part of my story
i have been to local neuromuscular drs 2 of them here in st petersburg fl
i have been to oregon science and health
columbia presybterian
johns hopkins
mayo at rochester once
mayo at jacksonville twice
bay pines v a , since i am a vet
67 years old and going on 3 years with whatever is wrong.
i have had no acute on any of my emgs until 2 weeks ago at the mayo, they picked up a few fib potentials they say tied to s-1
what is happening is not normal they diagnose radio-apathy and axons neuropathy but say no als
even started with a shrink because i thought i was letting my mind dictate my symptoms, he was the one that said i should pursue what is wrong. i am really at a loss what to do , so to end this saga  , i don’t want to upset anyone and i’m really not looking for nasty replies from people , i feel bad enough posting on sites for als. thank you for reading this and any help with direction would be appreciated . happy holidays to you and your.
Mikael