Scared for me and my family... help please

[Icanmanz]

I appreciate the response. I am 2 hours away from meeting with the Neuro with my wife to discuss this stuff. I also need to figure out how to handle this with work. Have the meds helped at all? Have you been diagnosed with anything?

Thanks again and please keep your fingers crossed for me.

Ray

daddy, prayers to you and yours from a friend here in Houston/Tomball, Texas!

Irma

 

[ltr]

I had a muscle biopsy that showed polymyositis and no, the meds are not working. Not a good sign.

 

[daddyof2]

Advice requested (thanks Irma)

I met with the Neuro today, and the results of the biopsy were not in yet- which I expected. He however does want me to start a 4 day IV cycle of Solumedrol starting Tuesday and then what looks like a 6 week regime of Prednisone.

Doing some research on these two drugs has scared the heck out of me. The side effects sound common, severe and somewhat permanent. Does anyone else have experience on these drugs? Any advice on not starting this treatment until I get a definitive DX, hopefully from the biopsy? I want to get better, but these drugs seem really scary.

Thanks everyone.

Ray

 

[mamaoftwo]

You dont say what the neuro said? What does he think this is? I am guessing since he is trying the steroids route, he thinks myopathy? I hope so. You seem calmer in your post so I can only assume you got some good news.

 

[daddyof2]

Mamaoftwo

I am glad that I sounded calmer in my post, but unfortunately not. I had a rough night again last night, up at four freaking out about my family and getting myself upset. The Neuro did not say anything new, other than to prescribe the treatments I mentioned. He is hopeful that it is some sort of inflammatory myopathy, but is not ruling ALS out. If it is a myopathy, he thinks 50/50 inflammatory/genetic which means 50/50 treatable/not treatable. The treatments sound horrible as well and I am really anxious about life insurance/disability as well for reasons that I won't bore everyone with.

My right side is really getting weaker as well and my swallowing trouble is becoming bothersome....

Thanks for responding and listening mamaof2

Ray

 

[Icanmanz]

I am glad that I sounded calmer in my post, but unfortunately not. I had a rough night again last night, up at four freaking out about my family and getting myself upset. The Neuro did not say anything new, other than to prescribe the treatments I mentioned. He is hopeful that it is some sort of inflammatory myopathy, but is not ruling ALS out. If it is a myopathy, he thinks 50/50 inflammatory/genetic which means 50/50 treatable/not treatable. The treatments sound horrible as well and I am really anxious about life insurance/disability as well for reasons that I won't bore everyone with.

My right side is really getting weaker as well and my swallowing trouble is becoming bothersome....

Thanks for responding and listening mamaof2

Ray

Hi Ray, (that's my husband's name)! I read your post to mama, and my heart goes out to you. Prayers to you and your family. My prayers go out to all Pals, and Cals. I am praying your doc will be able to help you. All we can do is keep praying. How many children do you have, and what is your age, if you don't mind? Hi, mama!

Irma

 

[Icanmanz]

Hi Ray, (that's my husband's name)! I read your post to mama, and my heart goes out to you. Prayers to you and your family. My prayers go out to all Pals, and Cals. I am praying your doc will be able to help you. All we can do is keep praying. How many children do you have, and what is your age, if you don't mind? Hi, mama!

Irma

Sorry Ray, my mistake. Dumb me! I asked you how many children, wow, you are daddyof2! That answers my question!

 

[mamaoftwo]

I know that feeling well Ray. I am awake most nights between 2am and 5am, either staring at the ceiling or pacing the floor. Sometimes, I just go into my kids room and watch them sleep. There is just no respite. I have tried things like ambien to no avail, I have even tried melatonin - nothing! The only thing that works for me is benadryl. Knocks me out cold but I always have a hangover type feeling the next day.
Back to your neuro - have you had EMG's. Cant recall. Sorry it is difficult to keep up with everyone's tests etc. At any rate, hopefully your biopsy will come back negative for ALS like it did for Leslie and Jamie. Did he tell you when your results will be in. I seem to recall Jamie had to wait like 3wks or something. Hang in there - easier said than done I know.

 

[ltr]

Ray, your diagnosis is similar to mine and you HAVE to take the steroids (Solumedrol and Prednisone)! If you don't give it a try and it is myopathy then you can progress. You can get permanent damage that when you do take treatment for, cannot be repaired. Don't read the side effects because everyone is different. I told you what side effects I am having and they really aren't that bad. Hopefully yours won't be either. As far as long term problems, well you should wait until you see if the Prednisone works before you worry about that. Please, don't be scared, but happy that it might be something treatable. Take any treatment they will give you. Good luck.

 

[daddyof2]

Thanks for your thoughts Irma and I have 2 beautiful daughters. Laney aged 1 and Devon aged 4. Mamaoftwo, it sure seems like you and I are in similar places. I can't remember the last time that I slept past 4am or was able to go back to sleep again. The Neuro said that the results would "trickle in" over the next couple of weeks. I don't really know what that means, but hopefully I will know something soon (although I am sure that you can all relate to maybe not wanting to hear). My EMG was "99% normal" according to the Dr.

I am obviously hoping that it is a treatable Myopathy, but given how long (in retrospect) this has been going on (~18mos - 2yrs), and my atrophy, it does not seem inflammatory. I am trying to stay postive, but as you can see, I am not very good at it. My understanding is that the steroids may make me even more depressed, which scares me. Man, what a pansy I am. Thanks for the advice as well LTR.

You are all in my thoughts and prayers as well.

Ray

 

[CindyM]

I hope you get a great report when it comes in, Ray. regards, Cindy

 

[daddyof2]

Thanks for the well wishes Cindy...

 

[CindyM]

You are welcome Ray. Waiting takes special patience and more grace than i can manage most days. We are all in this togehter. Cindy

 

[mk7]

Thinking of you

Dear Ray

Many of the people responding to you have had their diagnosis for a long time. So the calm you hear in their replies is something that takes time.

In the meantime, I hear how concerned you are (rightfully so of course). It might be worth it to go see a psychologist or a psychiatrist to help you deal with the emotional repercussions of this period. Talking to a proffesional might help. Also, s/he may be able to reccommend an antidepressant to help you cope for now. Many of these medications have anti-obsession components that will certainly help you in trying to cope with the recurring thoughts.
Much much love to you.

Michael

 

[brooksea]

Ray,

I hope the meds the doctor is putting you on will help you. In the meantime like Michael said, maybe some antidepressants would help if they don't contradict your other medication.

Let us know how you are doing. It is very difficult to deal with the unknown and I know it breaks your heart.

We are here for you.