Is this bulbar onset please help anyone who has this

[Nicky151179]

Hi everyone my symptoms started just over a year ago now and I've been to two neurologists but they are still baffled as to what I have.my symptoms began as feeling really really fatigued which was unusual and nausea,I went to doctor and he said it was ok I continued to feel worse then I noticed my face was beginning to droop both sides which progressively got worse along with atrophy in temples,eyelid droop,flaccid musckes face and body along with a lot of twitching when muscles are in use.i get twitching all over and people notice my facial twitching a lot,I have also lost muscle tone in arms and legs constantly pins and needles in hands and feet.they have tested me for ms,had lyme test,thyroid,lumbar punch,MRI of head and emg(which went for a short 10 minutes,also ck levels checked and checked for mg also all tests normal so they are baffled to figure out what this is and are watching progression and will re do tests later.have any of you had normal results to begin with and been diagnosed with als later?and do my symptoms sound like als? Your replies would be great as I am a mother with four children and I'm 33 I'm getting sicker all the time and the muscle loss is scary my face is a lot different then 12 months ago I also suffer from muscle jerks especially at rest and my tremors are bad.i also get very itchy and a rash on on my upper chest.i get constant leg twitches now and my neck hurts.i have an appointment coming up with neuromuscular specialist my doc think lower motor neurone as my forehead hasn't been spared it has wasted too.im really frightened and its so hard watching my body health and face change and get disfigured.i feel like giving up for answers as its only pointing to als can someone please tell me if this is familiar and if any of you with bullbar onset had same facial changes flaccid muscle,sunken temples,loss of muscle tone,droopy eyelids,fallen neck muscle under chin.anyone with als diagnosis please help and tell me if this sounds like you

 

[ottawa girl]

Nicky,

I understand you're anxious. Starting thread after thread may be therapeutic to you, but it's frankly irritating. Have you given any thought that everyone here has serious health issues? That we are all parents? That many of us have parents?

Everyone here is suffering, but only you are starting threads, asking basically the same question, in the hopes of a different answer. We have NO answer for you. NONE. We are NOT doctors. Your time would be better spent having fun with your children.

Suggest you contact your physician and line up some counselling and or medicine to get you through this trying time. Coming to this site ain't working for you.... Unless you're a troll in which case, our answers to date are evidently unsatisfying.

 

[vickim]

I don't understand why you are fixated on AL S. It could be anything. It is time to put on the big girl pants and take charge instead of this pity party you are stuck in.

There are many people here who are far sicker than you. They can't eat, drink, or wipe their own butts. You can still do all that right?

Go to the dr and go with an open mind. There are many tests that could still be done. It takes time, sometimes lots of time, there are people here who have waited months and years and some are still waiting. It took me 5 years.

I don't like getting on to people but I can't take people who talk about doing them selves in when there are others here far worse and still finding joy and living.

You have wasted enough time on fear and anxi ety and that is time you will not get back. You have started 8 threads with the same question. No one can keep up with them. Please for your own peace of mind stop and think about what you are doing. No one here is a dr and we have answered your question and tried to provide support

 

[Nicky151179]

It's taken many things to get this fear,so irritating as when u are judgemental to all the people.who come i.e. here looking for and if u think I haven't had real problems think again.it'st talent my face being paralyzes,sexual abuse at five,a man who use.to best me and then have his dog attack me,my husband having cancer and then holding our son dead in our arms and now this so next time u judge someone who comes on this forum scared with no answers think before writing.y something judgemental darling as I'm only 33 and have experienced alot of pain in my life and it's taken alot to break.what gives you the right you may have your answers some of us are still waiting

 

[vickim]

We have given you answers...your desparate posts are not getting you any where. We all have sob stories. I am not judging you. We are all suffering here and dying here. GO TO THE DOCT OR. Everyone has a hard life and those here know it better than you.

I posted on your other desparate post. I am done, but you need to think of your kids. They need you and you better start looking somewhere other than the internet for your answers. We are not drs.