In the middle of testing for ALS and Surprise Pregnancy!

[LeeLee07]

Hi all,
I am 40 and female. My diagnosis has been put on hold. My symptoms have been getting worse over the last year. Intermittent symptoms started with fatigue, weakness in wrists, tingling in extremities hands and feet and burning sensation, excess mucous and saliva, coughing and breathlessness, feeling like my tongue was too big for my mouth. The tremors started in my face, arms and lower back (painful), then spread to my right leg with tremors and sudden and extreme, prolonged weakness. I fell down a flight of stairs and ended up in emergency, then was referred to a neurologist. Lupus and Arthritis was ruled out. My lumbar MRI was clear. She was sending me for a thoracic and brain MRI when. SURPRISE, the unthinkable happened = I found out I was pregnant with my 4th child. She did a preliminary EMG but I do not have the results yet. She also ordered some very expensive blood tests, genetic testing etc. However, she didn't spend much time with me reviewing possible causes. Actually she didn't spend much time with me at all.

As soon as we found out I was pregnant she cancelled our appointment and the MRIs. No further follow up or testing can be done apparently while I am pregnant. Imagine morning sickness when you can barely swallow and hold your body up. The symptoms have not stopped and I am afraid. I feel so alone. My family doc is not supportive. It appears they are using the wait and see attitude but they are not communicating with me and getting in to see my doctor seems like a worthless exercise.

So I guess I am writing to see if any other women on the PLS network have gone through a pregnancy after or during diagnosis, and what I should do.

I understand they need to rule out other illnesses and the baby comes first, but what happened to supporting the patient? Frustrated and afraid - any advice would be very much appreciated. Particularly related to progression of the disease during pregnancy and prognosis for delivery under my own steam if it does progress to be ALS. Thank you to anyone and everyone on this forum for giving of your precious time to answer my post. I don't want to panic - working at positive thoughts and prayer. God Bless You All.

 

[liz]

Hi LeeLee -

Maybe you could suggest that your obstetrician initiate a consult with the neurologist. I would think your OB would want as much information as possible so he or she can help you manage the pregnancy safely.

Liz

 

[CindyM]

Hello LeeLee. I don't have any advice for you as it has been a long time since my pregnancies but I always found being pregnant to be a little overwhelming and I find these symptoms overwhelming so you are right to seek support! Hopefully you have friends and family nearby? Any other children?

Write to us anytime you like. Everyone here has felt alone at one time or another so we can all relate! You'll find folks are incredibly supportive. Cindy

 

[Al]

Hi LeeLee. I can see why the Doctor is kind of backing off. Don't take this the wrong way but at 40 you would be considered a high risk pregnancy in most circles.You are one in a million and they probably are more afraid of you than you can imagine. Possible ALS and a pregnancy is pretty rare. You should try to get hold of an ALS Clinic to see if they have anyone experienced in this.
AL.

 

[patricia1]

You need to go to a als clinic and be followed by both OB GYN and neuro.thru out your pregnacy and you mayn not have ALS Have you had a lumbar puncture Pat