about to be diagnosed ar 3 months pregnant with two year old baby

[sarah loves mya]

Hello,
My name is Sarah and I after a battery my tests my doctor basically he said it may be all and we are going for the egg today...I am freaking out have no money haven't been working and have a two year old daughter.....I have been an absolute mess about all this even though I can't change it I'm so mad it's happening to me how do I keep my head up and shot the little time I have with my daughter ...what should I do about my pregnancy as I know it's making all this worse..... I am 14 weeks along with breathing problems weakness and visible muscle wasting on the right side along with twitching like you wouldn't believe.....sometimes I feel like ending it know cause I don't think I can deal with all this

 

[Nikki J]

Since you are not yet diagnosed your thread was moved. I so hope they find another answer. If you are really in Charlton and not masking your location for privacy I hope you are being seen at the U Mass ALS center. Please do not accept a diagnosis from anyone who is not a neuromuscular specialist. Are you having an EMG today? Good luck

 

[lgelb]

Sarah,
It is most likely something else, but all best hopes for the EMG. If it is ALS, or anything more treatable, I am sure you will be eligible for additional State assistance.

Best,
Laurie

 

[AP1981]

Hi there,

I was diagnosed with bulbar als at 34 when my 3rd child was 5 weeks old. Symptoms started at 18 weeks of pregnancy but diagnosis took a while.

I am sending you positive vibes that you do not have als.

If you do, I am happy to share with you my experience of being pregnant with als.

 

[sarah loves mya]

scared to death

I recently had an egg on both right arm and leg with a clear reading .....which would be great but the neurologist doing the test was talking to me when I told him how I feared having all and my symptoms....when I told him about how I think my food goes down the wrong way and in return have been getting multiple r esp it or you infections from that he asked me to stick out my young and said he wouldn't rule out Buber onset and he's probably testing in the wrong area......I had asked him to test the area and he said my doctor had to order it....I am furious and upset with a 2 year old daughter and I'm four months pregnant ......any suggestions or anyone with Bulgar onset that had similar symptoms??

 

[sarah loves mya]

Re: scared to death

I meant to say liquid

 

[Atsugi]

Sarah, I think you meant to say you had an EMG test, not an EGG. The EGG glues a bunch of pickups to your skull. The EMG involves needles in your body.

Too soon to call this ALS, Bulbar or otherwise.

I merged your two threads to keep the history together. Please inhabit only one thread. Thanks.

 

[sarah loves mya]

Yes thats what I meant._._thanks for your help

 

[Nikki J]

Do you have an appointment with the ordering neurologist? Did that person know about your swallowing issues? I would not read too much in the comment of the EMG doctor about not being able to rule out bulbar. Of course he could not as he was not asked to EMG the area. Again, I advise you to get an opinion from UMass ALS center. It does seem if have significant atrophy in your right arm and leg as you implied, a clean EMG there then the odds are high this whole thing is something else but an assessment from neuromuscular specialists should give you either a diagnosis of something or a direction to pursue

 

[sarah loves mya]

No I realized that my chewing and swallowing was not that good._.I dont choke per say on liquids._some comes back up after i drink and I cough alot after drinking ._._swallowing foods is difficult as welll._._its progressing very fast ._.I lost twenty pound in two weeks

 

[sarah loves mya]

I thought it was just stress but Iam also not sleeping well .._but This saturday that just passed I got my fith respitory infection and am starting to link that to aspiration??

 

[Nikki J]

You can't know that. Stress, being run down, allergy season making you congested and vulnerable.any or all could be causes Instead of theorizing with little evidence you need to go back to the doctors. Who ordered the EMG ? A neuromuscular doctor? A general neurologist? You need to speak to that person but you also need to see your pcp and your OB. 20 lbs in 2 weeks? That does not sound like ALS but sounds extremely dangerous for your baby. Please make calls tomorrow morning first thing.

 

[sarah loves mya]

A general nuerologist._.I need answes because not knowing is wreaking havoc in my life._._ I dont understand why they would want to put a hold on this im not working and I feel the anxiety of it alll is too much for me to bare ._._Sometimes I just want to give up my relatonship is straining thin with my boyfriend._.I allready made custody arrangements for my daughter and at tge rate this whatever it is is moving I would think it would be easier to end it all._._You people are soooo strong on this site._.Sadly I dont feell that I am._._ and I wish this god awful disease never exsisted._. I I dont even know what to do anymore I always made the money._.Independent and now I am worthless and dont want to livee my life this way:?::?:

 

[Nikki J]

Ok one more time- you are not diagnosed with ALS. You had a negative EMG of areas you say are affected. You are guessing that symptoms that could be many things and have not been professionally evaluated are( then you have 2 issues you think? Bulbar ALS and something else affecting your limbs?). No one here can diagnose you but you clearly need help. For the sake of your daughter and your unborn child please make those calls I suggested tomorrow. Consider counseling -whatever may be wrong physically you are not dealing with it very well right now and I am sure hormones are not helping. Since I suspect you are going to have a hard time believing any other answers I again suggest making an appointment at the UMass ALS center. Appointments with neuromuscular doctors usually require a wait so get started tomorrow. You can always cancel if things are resolved to your satisfaction. I recommend this NOT because I think it is ALS because I don't think it is ( but I am just a random person on the internet) but because I do not think you will believe it is not easily.

 

[sarah loves mya]

Has anyone else with Bulgar palsy had reoccurring respitory infections