Disheartening news

[Willow]

I got a call last week that the neurologist I have been seeing in another province wanted to see me again. So yesterday we went and I had the appointment and another EMG study. I do not have a copy of the report only what he said. He is at a total loss for a diagnosis at this point. The EMG showed this "whatever" has progressed. There is muscle wasting in both legs, thighs, hip/butt, hands and temporal. The EMG also showed denervation/atrophy in these areas except he did not do temporal. He did do an area of the spine and I can't remember what he said about it. He had wanted another collegue to step in and give some insight but he was unable to at that time. He was really very perplexed by it all and questions if I have both a muscle and a nerve disease. He feels that this "thing" is not presenting as a typical disease should and therefor is creating many more questions than answers. He was unable to tell me what the next step would be other than he will meet with a number of collegues, he also photographed me to send out to others in the hopes they may have insight. He couldn't give me a name, or treatment plan or any hope of if and when this may or may not halt. I did not ask if this was ALS and he did not offer that imformation. I'm just at a loss of where to turn now and what to think and do. I will let you know what the written report says when my GP gets it.

 

[BethU]

Willow ... I am so sorry for this development. This is worse than just waiting for tests, or test results. Will he be in touch with you after he confers with other neuros?

My suggestion would be for you to bring up the subject of ALS, since he hasn't mentioned it. (Can't believe he hasn't mentioned ALS.) I'd call your neuro's office and see if you can talk to him about ALS. If you can't talk to him, when your GP gets the report, see what he/she thinks, and maybe the GP can call the neuro and get feedback on ALS. But this is crazy ...

Let us know what happens.
Hang in there.

 

[crystalkk]

Willow,

You difinately been dealing with this for a long time as alot of us.
I read your original post about your mom and sister. It sounds like it is something genetic. I agree it does sound like your mom was missed diagnoseded. beings she lived so long.
How is your nuero exam do you have brisk reflexes.
Maybe you could ask for a muscle biopsy, it might help in getting some answers.
Maybe you can get your sister to get some testing, it might be easier to get some answers if you both work together with the nuero.

 

[Zaphoon]

Willow,

I agree with Beth. Due to the nature of ALS and its implications, many doctors may have a reluctance to mention it for fear of over exciting the patient early in the diagnosis. Since you already have an awareness of the disease and its pressing on your mind, I would just ask the doctor if this is something under consideration.

If he says no, great. If he stutters and stammers and says yes, you will know.

Just some thoughts...

Zaphoon

 

[Micheline]

Hi Willow,
I am on my 3 rd Neuromuscular Neurologist. I have been tested up the ying yang. My first neuro. was confused and unsure. My husband has been my saving grace and has come to all my appointments. We ask, and ask. I had a "final MRI"(7-8th). I go back for those results and my muscle biopsy result on Nov. 12th.

I do however, have an OT (finally) coming today. She tried to put it off and I said NO. We have been waiting for months for one.

Keep calling your Neuro. We even asked for tests to be done that they never thought of and got them. Ask your Neuro. if you can get a second opinion. We did and saw 2 within a one month period.

Keep smiling :smile:

Micheline

 

[lydia]

Willow,

So frustrating for you! Even though your neuro doesn't know what it is at least he admits he is at a loss and seems to really extend himself to get others' opinions instead of just saying "wait and see". I hope that he continues actively searching and hooks you up with someone who can provide more insight. You could probably get his report directly from his office if you didn't want to wait until it reaches the GP; I did that a few times. Within a day or two of my appointments I could get the reports myself.

Take care-

Lydia

 

[Willow]

Thanks for your input. I didn't mention ALS to him because I have never felt that I have it, or believed my mother actually had it even though she was told she did. She lived far too long, but what ever this is it seems to have very similar symptoms. That is what led me to this site several years ago. He also had opportunity to express what he felt it was and said he is unable to at this time.
I have had two biopsies and one of those extra tissue was sent to another hospital and so I have had 3 samplings read. I have had so many MRI's (8-10 I think) with and without contrast. I have also had 4 EMG studies done. I will have to wait some more I guess, I just worry that in waiting we are missing an opportunity to "treat". This has continued to progress during all of this time. Hopefully he will be able to connect with someone who may have some more insight and yes, I am greatful that he will continue to search out. It is just very disheartening to still be in this waiting game while this disease coninues to progress.

 

[BethU]

Willow ... I have no idea if this is good advice or terrible advice. Hopefully someone else will chime in and set me straight.

But if you are afraid it is ALS, and you feel you are missing a chance to begin treatment early (i.e., take Rilutek), could you ask your neuro or GP to prescribe it for you now? I don't know what side effects it might have for you, or if it is at all appropriate for someone who has not been diagnosed.

I did that with my own GP last May. I had been diagnosed, but the neuro did not give me any information about Rilutek and it seemed it was going to be months before I would get a clinic appt, so I went to my GP, and she wrote a script right away.

As it turned out, I felt that for me, Rilutek was not helping, but many people are taking it and feeling that it works to slow down progression.

I do hope you get answers soon.