[maryfrances]

What is the difference between PD and ALS?
Can you be misdiagnosed with PD when you really have ALS?

[Aunt Bean]

ALS is completely different from PD. I took care of a wonderful lady that had it and her hands stopped doing ANYTHING...I was her hands.....there was no tremor . I would say a doctor would recognize ALS more easily than PD

[Nan Cyclist]

Although I am not a medical doctor, both my father and my brother had ALS and I have PD. The two diseases are distinctly different. My father lasted for two and half years and my brother for 15 months, which lets you know that the deterioration is rapid and inexorable with ALS. There are several variants of each of the diseases, some progressing more rapidly than others. A competent neurologist should be able to tell you which you are facing. My thoughts are with you. Neither is a piece of cake.

[GerryW]

ALS is characterized by increasing weakness. When I was diagnosed with PD the doc first tested my hands and feet for weakness by having me push with them to test their strength. When she found I was strong she started looking for PD signs like micrographia, shuffling gait, tremor, etc.

[reverett123]

Mary Francis-
You have been around here a long time. Or at least long enough that we would have long since realized that there was something going on besides PD, Do see a neuro and pin him down, but keep reminding yourself that it is NOT ALS. No point in scaring yourself needlessly. -Rick

[maryfrances]

Thanks guys. Randy and I saw a new neurologist yesterday. We are not quite sure if we will continue to see him or possibly go to Birmingham, AL. He suggested the patch for Mirapex, and taking higher doses of it and less Sinemet. He had not comment for the shortness of breath.

He really didn't check for ALS, but agreed with my comment of "I guess I'd be dead by now if it was ALS."

I've just had a lot of trouble breathing lately. My determination is so strong, that I am still working, but I am thinking that this may be my last year. It is almost physically impossible for me now.

Mary

[maryfrances]

Oh, I forgot to mention... neither Randy nor I have a tremor.
The doctor was really puzzled by this. Does anyone else here not
have a tremor? What does that mean?

[maryfrances]

I hate the feeling of not being able to breath. It is terrifying.
Does anyone else get this?

[lindylanka]

There are all sorts of reasons for shortness of breath, and only a few of them as far as I have been able to see relate to breathlessness, which is something I had as an early symptom, and which is now a very real problem. I had no tremor early on, other than lip tremor, now I do have tremor at times, especially if I am very anxious. But that is after ten years. Have you had any work up for other causes of breathlessness and what makes it worse? Does it get better and worse with your meds?

I would suggest that you have proper testing for B12/Pernicious Anaemia which are known to cause breathlessness, there are other threads here that you can access, and on other fora here at neurotalk there is more information. It is worth eliminating as a potential cause, but you should be aware of the testing that is needed, and issues about the reference range that might lead to you having a test that comes back negative for deficiency while actually being positive. (This is still a big issue for those with B12/PA problems).

Is your breathlessness related to rigidity? By this I mean does your chest, ribs and all feel tight and inflexible and prevent you from taking in good breaths? If so it could you are under or over medicated. Discuss with your neuro.

Keep posting, and let us know how you are doing. Breathlessness is a real issue, and someone should be taking note of it, and helping you understand what is happening when you get like this.

[GerryW]

Originally Posted by maryfrances

Oh, I forgot to mention... neither Randy nor I have a tremor.
The doctor was really puzzled by this. Does anyone else here not
have a tremor? What does that mean?

There is two types of PD. Most people have tremor dominant (TD) which tends to progress more slowly. 30% do not present with tremor but usually get it later. These are called Postural Instability Gait Disturbance (PIGD) types and they have a poorer prognosis.