NEWLY DIAGNOSED with Bulbar Palsey

[Janie H]

I don't know what a Peg and vent is? Sorry, I try to research but too many horror stories out there. Depressing

 

[pearshoot]

how does your family know you have lyme/ they are in denial. you need their support for this journey. work on getting your body as healthy as possible

 

[Txgirl]

Thanks for the advice, I have been doing a half hour on the treadmill, 5 minutes on 5 off. My biggest problem now is some of my family. They keep telling me that the doctor is wrong and that I have lyme disease, I would love to hear thoughts on that. I wish it was lyme but I have a very good doctor, I hope he is wrong but i have accepted the diagnisis and am trying to stay healthy and live every day to the fullest, I don't want to keep wondering what is wrong ( I did that for months) my sister is insisting that I get a second opinion. I spend 2 days at a ALS clinic, thay seemed to know what they were doing, my doctor has been a ALS specialist for 35 years. I hope he is wrong.

Sorry that you are facing this issue also, hope your symptoms are no worse than mine, jumping muscles, choking mostly.

Hi Janie,
My family, mostly my mom insists that the doctors are wrong. She was calling me everyday with a new diagnosis for me (anything other than ALS) She just can't accept it.
She has come up with Lyme, celiac disease, vitamin deficiency to I just don't pray enough. If I prayed enough it would all go away.
I finally had to get firm with her and let her know that two very good Neuros and ALS doctor has said I have ALS and I have been tested for everything else & all negative.
She has since backed off a bit. I think it just takes family a little longer for it to sink in and accept it. They go through a denial stage. Good luck to you.

 

[Txgirl]

I don't know what a Peg and vent is? Sorry, I try to research but too many horror stories out there. Depressing

Peg tube is a feeding tube. A vent is a ventilator.

 

[R9L13026]

Percutaneous endoscopic gastrostomy is an endoscopic medical procedure in which a tube (PEG tube) is passed into a patient's stomach through the abdominal wall, most commonly to provide a means of feeding when oral intake is not adequate.

I had to look it up also.

 

[Cricket]

Hi Janie, i personally think that you have a great attitude. I think sometimes it is really hard for our family and friends to accept this kind of diagnosed (completely understandable too). Everybody around me tried to find a reason other than als and were searching for cures. It did get a bit annoying. I didn't want to put my energy there. I wanted to get on with life and enjoy it. That took awhile for some of my friends to understand: accepting the diagnosed did not mean that I was giving up. Wishing you all the best.

 

[RobbiJ]

I too have been recently diagnosed. 12years ago I had an abnormal mammometry. It showed significant weakness in my upper third esophagus, I had the test because of difficulty swallowing liquids. This has very, very slowly gotten worse and now I also have problems with dry foods such as crackers. My tongue is atrophied and I occasionally have a weird jerk in my jaw when I'm trying to speak. About 5 years ago I started noticing difficulty climbing stairs and getting up from chairs, etc. this has also gotten worse so I now use a walker most of the time...partly for balance, but mostly for support. I have stiffness in my legs as well. 2-3 years ago I noticed weakness in my arms and I started dropping things. That is when I first went to the Dr. I've seen 2 neuros, a rheumatologist and an orthopedic rehab specialist. I've had many, many blood tests, MRIs of my head, neck and spine. I've had a muscle biopsy. The 1st neuro said I had moderate sensory neuropathy of the surel nerve (in my leg) probably due to my type 2 diabetes. She only did the needle EMG in one spot after the finding on the nerve conduction study. The rheumatoligist ordered a muscle biopsy which ruled out a myopathy but suggested a mild nerve denervation. She referred me to another neuro. More tests...all blood work has been pretty normal, except a mild hypothyroidism. The last EMG showed severe denervation of my r leg, hand, forearm, shoulder, tongue and cranial nerves. Nerve conduction study normal...surel nerve not tested. Diagnosis: probable MND. I've been tested for SMA and Pompe disease, negative. Next week the lab is coming to do antibody testing for MMN. The neuro said unlikely as I have no conduction block, cranial nerve involvement and mild infrequent UMN signs. He is leaning toward PMA. Any thoughts? Sorry for the long, rambling thread.

 

[Janie H]

Thanks, my son said that they are going through the denial faze, I am bringing my sister to the doctor with me next time, I want her to have my power of attorney but she needs to stand behind me and accept.

 

[Janie H]

Wow, sounds like you have it worse than me. Mostly my sister wants to to get a second opinion. I can't go through that again. You are right about the denial, why do I feel hurt by this? I don't understand myself. They love me or they wouldn't be looking everywhere for another diagnosis. I had a MRI, EMG, 14 vials of blood work, I feel that lyme would have shown up.

 

[Janie H]

They think that the end stages of lyme cause the fasciculations, I had a low grade fever a couple of times after working out, I have since slowed down.

 

[Janie H]

Thanks, they showed me the peg tube at the clinic, said that you could still eat while having this.

 

[Janie H]

I think it's because I'm still going to work, feel fine most of the time, glad to hear that this happens to a lot of us, I am bringing my sister to the doctor with me next time, I want to give her my Power of Attorney but she has to believe that I am sick. I know it is rooted out of love but I feel annoyed, as many tests as I have had, I feel that Lyme disease would have shown up in a blood test.

 

[Janie H]

So sorry, I understand how all the tests wear on your nerves, I saw my family doctor and told her that the pressure was to much to handle, she put me on Zoloft, after about a week or so I was much more able to handle things, I am supprised at how well I handled my diagnosis, it's the months of tests that wear you out. Once you know for sure what you are fighting, it actually gets better.

 

[skikaz]

Hi Janie, do you to the Charlotte ALS Clinic or do you travel to Columbia?

 

[Janie H]

Charlotte clinic, very nice people