nEWLY DIAGNOSED MOM

[JenniLee]

Hi everyone!

I was hopefull when I found this site; dedicated to this very subject.

I am a 37 year old mother of 2 young girls (6 & 5) who was just diagnosed with ALS Bulbar. I am so very scared and depressed. Today I have been more proactive than I've been in the 2 weeks since I saw the neurologist.

My friends and family say that I can "fight the fight" , but, I just feel so tired and sad. I had 3 teeth removed in July in prep. for inplant surgery. In Oct. my mother was going thru medical problems. My doctor prescribed "Trazodone" to help me sleep. I had such a terrible reaction to it the next day; dizziness, nausea, migraine, thumping in my ears. It eventually went away (actually, when I refused to take the med 3 days later). Within a few weeks my speech was slurred and then slowed. I thought it was my teeth.

In late December, I noticed my fingertips were weak ( couldn't tie balloons for my daughter's birthday) in my left hand. The funny ear thing from Oct. turned into a feeling of congestion between my ears, nose and throat; like I was all clogged up. I finally went to my AP and she said I had some inflammation in one ear, gave me clarinex and sent me on my way. I went back 2 weeks later, metioned the same thing, including my speech, and the weakness in my fingertips. The doctor did a neuro exam and found everything to be fine. She felt the speech would work out when my inplants were done, my fingers were probably a "pinched nerve", and I had ruptured a membrane in my ear that was "healing beautifully". Finally, I took my self to a neurologist and he did the diagnostic stuff; electo, and some blood work. In my follow-up, he sent to a specialist at another hospital, who, after reviewing my records and doing a few more test, came back and said, "I'm sorry, you have ALS". I fell apart while my husband talked to the doctor. The doctor made me feel like "here, Jen, here's a loaded gun...it will go off soon".......and then we left.

I will be going to Columbia in NY in April. I've been doing some relaxation, but can't get past the doom & gloom of that doctor. I want to be an optimist, but how?

Thank you for listening (reading).
Jen

[CindyM]

Hi Jen-so sorry you have this awful thing happening to you and your family. I am also glad you found this site - there are others here with young children who can definately relate and they should be checking in soon.

Meanwhile, is Columbia an ALS clinic? If so, you'll get lots of support, tips on how to manage and encouragement there. Some clinics even have support groups for spouses and children. Meanwhile, visit us as often as you need and ask whatever you need to. No subject is off-limits here, as you will see if you do a search from the tab at the top of the screen. Regards to you and hubby and the children. Visit when you are up to it and tell us how it goes...Cindy

[JenniLee]

Thanks Cindy! I truly appreciate the support. I'm going to Columbia for a 2nd opinion because they are supposed to be one of the top hospitals in ALS research and studies.

Jen

[ltr]

Hi Jen,

Really, really sorry for all you are going through. I hope to God the diagnosis is a mistake, you are so young. Please try to keep your chin up until you get another opinion. I was wondering where Columbia is and where you live? I agree with your family and friends to fight for a good life. I haven't been diagnosed with als, but I have similar symptoms that have depleted by quality of life. Since coming to this forum and reading how others have dealt with their illness, I have come to realize that, no matter what I have, I have changed, but I can work with my changes and enjoy my life. But, I will never stop fighting for a diagnosis and cure. I hope you can find the same kind of peace and end the doom and gloom you feel. I remember being there once too and it's horrible. I'm sure your kids want you to be happy, as do we. Keep in touch. Good luck with you upcoming appt. I will be thinking and praying for you. Leslie

[Beebe]

Hi Jennilee, Columbia Hosp. in N.Y. city is an excellent choice. They are doing private funded research there for stem cell. Jennifer Estess and her sisters started Project ALS. Her Neuro. is at Columbia. Where do you live?? You didn't post it. The reason I ask because we felt the same way when my son-in-law Jack was dx in Philly. The one support group was DOOM and GLOOM too. We are all in this together and are here for one another. My Best to you, Beebe

[Beebe]

Hi again, I apologize you're from Connecticut right. When I looked back quick I looked at ltr. Sorry...

[JenniLee]

Leslie,
I can't thank u enough for your words....they were so uplifting. I have a question, where on this site can you get info or advise on vitamens, supplements, alternative therapies? I hope we can keep in touch, you seem very strong to me...something I could use.
Jen

[JenniLee]

Beebe,
I'm from northeastern Connecticut. But, I'm willing to travel the country to find the best; not that I can afford it. I loo forward to keeping in touch.

Jen

[ltr]

Hi Jen,

If you go to search at the top of the page and type in what you are looking for, posts will come up. I have a post under general....Jamie suggested a neuro vitamin regimen for me and I feel much better since I started it. Less twitching, less cramping and some more energy. Check it out! I think it is the one titled good news/bad news. Look forward to your posts! Leslie

[JenniLee]

Thanks!

Jen

[CBowman]

Jen,

I know the feeling you are going thru right now. I have been dx with ALS on 2/15/07 and I am only 34 years old with a fiance and we wanted to start having children soon. I am going for a second look next Monday at the Mayo Clinic. You are shocked right now and the doctor may be wrong, ALS is hard to diagnose. I hope you do not have it. This site is a good reference, a chat room for people with ALS, you can come here and ask people questions about symptoms, problems, day to day struggles, etc. We are here for you, try to remain calm (easier said than done).

Chad

[JenniLee]

Thanks Chad!

Best of luck to you. I'll keep my fingers & toes crossed for you.

Jen

[patricia1]

Jen It all sound like that tooth is the problem he might of hurt a nerve I would have it removed asap and go to a oral surgeon not the guy who did it They never own up to their mistakes GOOD LUCK Pat

[patricia1]

Thats where my neuro is in philly Dr patterson she is in research for AlS she is wonderful Pat

[Tremayne]

I am so sorry, I know just how you feel I myself have just been dx with ALS,(november 06) so this is very new for me, I also have children 10,15,17 (all girls) I am 39, this is the most diff. thing I have ever had to go through in my whole life, i have cried so much that, I am cried out, I have bad days but, you have to go on, think positive, live for the now, and take one day at a time. I know that is eaiser said then done, but we have to go on for our own peace, so that we are strong for our children. Have faith, pray, and again just take it one day at a time.

[patricia1]

Hi Are you seeing Jeffrey Rothstein if you are the man has no emotions He came in the exam room looked at my medical records gave me a short exam and looked me and my husband and say YOU HHAVE ALS and asked us if we wanted to see his team or would we like to found a ALS clinic near us and left me and my husband in tears We waited 6 years to hear that DX. and it was a real shock we had no idea . So be perpared if you are seeing him >He has been working with rats in the lab too long Good Luck Pat

[patricia1]

thats what so strange no emg just went over my records looked at my arms and said als He is well known go on the internet put in john hopkins and neuro dept and he is one of the scientist He is in extensive research with als so I hope he finds a cure if anyone will it would be him, But his bedside manner is horrible. sorry I just want you to be prepared.Good Luck Pat

[hopealive]

Jen,

I am sorry to hear that you have been given that dreaded dx. My mother was dx'd with bulbar als this past september. I have found tons of great support here, and other places as well. Don't listen to anyone that tells you to just sit around and wait. There are many, many things out there to improve your quality of life no matter where your road takes you.

You are NOT alone.

Love,
Holly

[Meg1]

Before I go for my 2nd, I'm going to write a detailed list of EVERYTHING that has happened this past year.

Jen

Jen, if your plan is to give such a list to your doctor I would advise against it. Tell the doc your top three or four symptoms--these are the symptoms that affect your life the most--and let him ask if you if there's anything else he needs to know. If you have ALS it doesn't matter what has happened in the last year. No one knows what causes ALS so anything that happened before is irrelevant. If it's not ALS, a doctor other than an ALS specialist may be interested in a modified list but it's very important that you isolate a few REAL symptoms and problems. Doctors view people who show up at appointments with long lists of symptoms as hypochondriacs and these people are often not taken seriously.