Newbie with a list of symptoms.

[rose]

HappyP,


It is great that you were able to be seen with such short notice, and that you are already set for some tests. One question you might pose to your neurologist, if the MRI turns up nothing, is for another mri that is a coned down version specifically of your brain stem. (of course this may be the type you are scheduled for anyway) According to my neuro, just a more general brain mri, depending on what is to be found, can sometimes not be specific enough. Definitely insist on this, if the mri you're having today does not turn up anything, and you start going down the murky road to diagnosis, with everyone (you and doctors) making leaps of supposition.

We had a member who's husband was diagnosed with progressive bulbar palsy, despite normal EMG results, and normal reflexes, etc. They questioned it, (and actually asked for the coned down mri, but their request was denied). The neurologist, who had a huge ego, insisted this (PBP) was what it was. They got a second opinion, and it was found that he had oral cancer, which could have been treated much sooner. I hesitate to say this kind of thing for the potential fear factor, but its much better to understand the importance of getting at a valid diagnosis, especially if the timeliness of reaching a diagnosis makes a difference in outcome.

Ironically, while I was typing this, I received a private message from her. In part this is what it said:

The past year has been a challenge, which you all know a lot about. My husband responded to the cancer treatment in that he has been clear for the two tests post-treatment, though he still can't eat and probably never will. This is a function of the devastating radiotherapy he underwent due to the cancer not being diagnosed until it was in Stage IV, because he'd been misdiagnosed with ALS for five months. With me saying to all the doctors "I really don't think this is correct; you're not testing the proper area and all the tests are negative" and them ignoring me.

I am not by any means suggesting I think you, or anyone else has a tumor or cancer, just that it is vital that we have doctors we trust sort things out to the fullest possible.

Good luck to you. Know that we're here for you, and also that we human beings as a whole, have an amazing ability to cope and adapt to whatever we come across in life.

 

[rose]

Just an "edit" which I was unable to do earlier as I was called away from the computer. Currently this forum software has a glitch in it, manifested by adding the letters "ALS" when a poster inputs the word "diagnosis". So, in my previous post, in the last sentence of second paragraph, my intent was to say how important getting a correct di_agnosis is, if earlier treatment will make a difference in its success.

I hope this software glitch is fixed soon because I don't always catch it with proofreading.

 

[Al]

If you put in our short form for diagnosis it will change it to diagnosis for you. Can't even get it to quit here in edit D-x. So it will if you hyphenate it.

AL.

 

[Happyphysicist]

rose,
Thanks for the advice! I am a medical physicist is the radiation oncology field. I have spent my career fighting cancer with radiation. I took a look at my MRI last night and there were no tumors (to the admittedly untrained eye). I was hoping there would be, because that is something I could deal with. Never thought I would find myself hoping I had cancer, ironic. The more I read about bulbar ALS the more I am resigning myself to it. Which I know I shouldn't do but I don't want to waste a moments time making the decisions now that will be best for my wife and 5 year old son. I have an appointment with the neurologist in an hour. I assume the next step is an EMG, but I will bring up the oral cancer. He might be a little more responsive to me give my background.
Thanks again!

 

[TedH5]

Wait to see what the EMG says. Keep us posted and I will keep you in our prayers. I hope your appt with the Neuro goes well. No matter what remember if you do have ALS there is life after diagnosis.

 

[Happyphysicist]

Normal MRI, diagnosis bulbar ALS. Next step to see an ALS specialist in Indianapolis. Neurologist said they will want to do the EMG themselves.

 

[TedH5]

So sorry for your diagnosis. Getting a second opinion by an ALS specialist for validation as you are doing is obviously crucial. Hang in there! Trust me when I tell you that the sun will rise tomorrow and so will you! Stay strong and keep the faith!

 

[rose]

Well, this is the last thing I wanted to read! I do agree that seeing a specialist in the motor neuron field of neurology is extremely important before resigning to such a diagnosis.

I know you and your wife must feel devastated, just know, that regardless of the validity of your preliminary diagnosis of ALS, you and she will find a way to deal with it. Not something that happens overnight, but eventually there will be a New Normal.

I hope, if it really is PBP that catching it early will allow you to begin with Rilutek which is most helpful when started as soon as possible. There are promising trials ongoing. Not that its a "good" time to find yourself in this place, but, having hope helps tremendously.

Just know that you have a whole new family here, that you never even thought about existing, and we'll be here for you.

 

[KC2U2]

We are the one "club" that would love to never have a new member. Praying for you and your family at this difficult time.

 

[rose]

I wanted to add, and encourage you, especially given the age of your son, that you start working on voice banking as soon as possible. Even right now, simple recordings on any device you have handy, with things you want her to be able to hear in your voice.

If you do a search on this forum using the words "model talker" and "voice banking" you can read what many of us did with this program, while not perfect, is a voice synthesizer that can come somewhat close to how our natural voices sound. The process is called Voice Banking.

God this is hard. We have a "club" here which we don't ever want new members to be able to meet the admission requirements!

 

[Karin Bolette]

Hi- I have bulbar symptoms but at this time they do not believe it to be ALS.

I suggest that you get a referral for a video swallowing test. It was the first test that confirmed I had trouble swallowing. They take a video as you swallow foods with a little barium on it. It can one confirm your difficulty and suggest your Gp in what direction to go. Whether it may be MND, a tumour or a stroke. MRI is the first step you do need to go. Does your MRI include your Brain, brain stem and your cervical spine, which is the upper part of your spine connecting with our brian stem.

I also agree that an ENT can rule out a lot of problems.

If anything causes you trouble swallowing DON'T eat it. It can be very dangerous and scary if you start choking and don't have the strength to cough it up, anyone there to help you or if it goes into your lungs or up your nose.

I was told to eat very small pieces of food, I use sauces especially with meat, hamburger meat is a definite not, some fish unless there is a sauce, absolutely no peas, rice, muffins or soft cake, raw carrots and cut celery in very short pieces as the stringy part can cause choking, and anything that causes you trouble, don't eat it. Eat by yourself when you are able to and concentrate on chewing and swallowing. Don't breath as you start to swallow, may seem silly, but when I do this I always start to choke. Don't talk when your eating or keep it to when you have cleared your mouth and throat. Drink lots of fluid when you swallow and make sure each mouthful goes down before you take another. I can eat gala apples chopped up but I can't eat red delious apples as the skin is too thick. Chopped fruit with yogurt goes down well for me. I blend my soups and when eating meat tend to eat stews that are well cooked and have a gravy. Heart burn has been a real problem for me, so I need to stay away now from spicy foods, which can also be hard to swallow.

I highly suggest the swallowing test and also a lung function test as these will reveal in a very concrete way that there is a problem and for me very much helped me continue when I came across doctor's who discredited me.

Because my initial symptom was shortness of breath and that I have a congenital heart defect, the doctors spent a year and a half ruling out my heart. It wasn't until I complained about my trouble swallowing and choking that I was referred to a neurologist. He did an MRI and said I hadn't had a stroke and dismissed me. Another Neuro and I was initially told, due to my lung function and swallowing test that I had an MND, but after 2 clean EMG's they say my nerve damage at this time is not enough to be diagnosed with a MND.

Because I have several swellings on the back of my head and have what is likely spinal fluid coming out my ears I'm finally getting the MRI that I've wanted for 3 years now. I see my doctor at the end of the month and really hope something will show up that can maybe be treated with surgery or something. If nothing shows up then I wait for my symptoms to progress, have them treated as best as I can and see what happens.

The brain is still a very mysterious organ. It's just in the best decade or so with CT's, MRI's and Pet scans that doctors are understanding the vastness of it. Environmental concerns are also not investigate much as that would mean a change in how we eat, breath and live our lives.

I wish you all the best and hope my story will be of help to you. Rememer always keep yourself safe. Blessings Karin

 

[rose]

Karin makes a good point that there is still additional testing to possibly find a more obscure reason. Having the EMG is very important in confirming what is suspected.

When you are seen at the facility in Indianapolis, your swallow etc will be evaluated while you're there (or should be) Once you go to a multidisciplinary ALS clinic, there will be a variety of specialists that see you in a relatively short space of time, and will go over many options with you as far as supportive help for managing things.

 

[abbas child]

So sorry to read of your diagnosis! I hope that by being seen in Indianapolis, a better diagnosis will still be found. You've had an enormously fast- breaking life within the last week--and undoubtedly very emotionally draining.

 

[BarryG]

I am very sorry to hear about your diagnosis and I don't have much to add to all of the good advice that everyone else has already given you.
All I can say is that my number one wish is that the bulbarian club was so exclusive that there would never be another member.

 

[Lavender Lady]

Sorry to hear of your preliminary diagnosis. When I was told that it was certain to be ALS, my husband and I were in shock and tears flowed and all I could think of was what about my kids. They are 11 and 13. I wanted to know for certain asap and so they put me through a battery of tests that next week. Within 7 days I recieved my final diagnosis. I hope they can get you in asap and find out for you too.

As for our boys we told them I had ALS, but did not tell them of its fatality tell later on in the progression. We are also in family counseling.

As for voice banking do it now......I have already waited to long and my speech is very slow and I had limb onset less then one year ago.

I will hope and pray with you that they were wrong.