First Clinic visit tomorrow

[MZOregon]

Hello,
I have been reading awhile, and have finally registered so that I can begin to take part in discussions. My husband has not yet been diagnosed 'officially.' He has pretty text book symptoms of progressive bulbar palsy. He started having a dry cough last March and Gen. Dr. told him it was likely allergies. His cough turned into choking and slurring. In August, he got sick with a respitory virus and suddenly all symptoms were magnified 10 fold, including his breathing while choking, swallowing and chewing. He saw a neuro and the Dr. told him that although he could not diagnose him without testing, it appeared that he has ALS. When my husband asked him what his prognosis is, the neuro said 6 mo. at most. Long story short, a week later, his virus got better, his speech somewhat improved and his breathing improved lots. In the week's time he had MRI, metal testing, urine testing, blood tests, lung function tests and muscle and nerve testing. All tests came back in conclusive. He has lots of fasticulations in his arms, some in his legs. His tongue is visually atrophied, yet he can still chew with lots of effort and caution. Swallowing is the same, he takes lots of caution when doing that. He had a swallowing test a few weeks ago. He has been referred to the Oregon Health Sciences University ALS / Motor Neuron Specialty Clinic and tomorrow is his first appt. He has always worked out, walks lots, hikes, bikes and bowls. His fatigue and weakness is apparant, however, I think that as strong of a man as he has always been, that it may take awhile for his muscles to deteriorate, which is great! I am unable to attend his appt. with him tomorrow This is the first one that I have not been able to go to. I am thinking that he will be sent for further testing, but don't really know. I hope that we can finally get some answers. His father died of ALS in 1999, limb onset. I am hoping that there will be some kinds of treatments that they can do with him that can slow progress, or make his life easier. He is still working. I read about Kennedy's Disease, and his symptoms are similar to that as well. Predominately Bulbar Palsy related, with some muscle cramping and weakening. Can someone give me an idea of what will happen on a first viit to an ALS clinic? Thanks for being here....the information here is a God Send....

 

[TedH5]

I am sorry that you are in this situation and hope that ultimately you hear something besides ALS. Since it sounds as though he has not been diagnosed as of yet this first visit will most likely consist of a clinical examination, reviewing the case history and if he has his Mri's with him they will review those and perhaps go through all the other blood tests etc that were completed. Depending on what they find they may schedule an emg in the near future. I wish you both luck and please let us know how his visit goes.

Stay strong and keep the faith!

 

[Gail K]

If it works like my clinic, you will sit in an examining room and a slew of people will come in to see you, PT and OT, representatives from the ALS association, your doctor, a mental health person, and a speech specialist and nutritionist. My daughter went to clinic for the first time yesterday and found it very helpful to her.

I, too, and sorry you have to be here.

 

[momap53]

Be sure to take all records with you including the discs from any MRI's. If it's your first visit with this Neuro you'll have a thourough exam with strength testing and possibly another EMG. respiratory will do some breathing tests. You'll probably have access to a Social Worker as well. It's so great to have all the different specialties come to you instead of having to schedule and keep so many appointments. Have your questions ready to see what Clinical Trials you might be eligible for. Good luck!

 

[Ms. Pie]

From what I understand, no neurologist will give a prognosis. They just don't know how it's going to go and every everyone is different. My husband has made a spreadsheet with my whole medical history fir the past 5 years and gives a copy to any new Dr. I see. It has been very helpful. I'm so sorry you and he have to go through all this.
Hugs

 

[MZOregon]

Thank you,
My husband's visit was 2 hours long. He worked with three different doctors. The tested his limbs, feet, legs, toes, arms, hands, fingers, and said that all of that function seems normal. They are re-doing the EMG test that was done once before (the test that he hated the most!) as they said that some of the data was skewed and they, therefore, did not trust any of it. He has to have a blood test sent off to determine if he has Kennedy's Disease, and he also had to have a sleep study and another lung functioning test. Their statement to him, based on what they see today, is that he has either got Kennedy's Disease, or Bublar Palsy. I think that I may just apply for my Doctor's license as I had this figured out a long time ago! (just kidding) Anyway, no worse news, and a little better than we had expected. We will continue on this journey and live our life to the absolute fullest possible while we can. I'll stay in touch here...thank you for all the nice words. Hopefully I can go to his next visit.

 

[TedH5]

The fact that ALS is obviously good news. I am not suprised that they want to do another EMG. An emg is only as good as the person conducting the test. Most Dr's only trust their own or another collegue whom they know and trust. I hope they figure what is wrong quickly and are able to help him.