I need your opinion

[Jamiet]

I go to get biopsy results monday.

I've told the ALS spec, since Oct. 31, 2006, that what i have is ALS. told them i did my homework, listed all of the symptoms i have, and in the following three appt.s since then, have been told by her, the ALS Spec. that with 100% certainty, this is NOT ALS. That was a 100%......the last appt., they were pretty confident.

We, as we've been speaking in the latest threads, this has caused me much heartache, to include, spouse, family and friends all thinking...."i am nuts" and "i am a hypochondriac" , "quit complaining", "nothing is wrong with you".

Frankly yall, most of you are going or been thru this....this is a double whammy...i mean, we not only have to go thru life like this, but on top of that.....the drs have made life even more miserable?

I don't know what my reaction will be monday. I just want your opinion of what to say, so this doesn't happen to the next person, unluckily in line behind me for a diagnosed of some sort. i will say something if i was right, because it's caused me alot of heartache....................

rgds,

jamie

 

[brooksea]

Jamie,

Do you think you could call them and see if they already have the results? How agonizing!

Is this from the ALS Clinic or just your friendly neighborhood neuro? Whichever the case, maybe they have the results and could only fit you in on Monday to tell you.

As to what to say, I don't know. We had one neuro tell us"it is what it is." Us sitting there in stunned silence hoping his second opinion would be something else. No literature in the waiting room regarding ALS at all. We couldn't believe the lack of information from the doc. On the other hand the other 3 neuros have been wonderful.

I think either way it goes, you should ask for enough time to talk to him/her about your anxiety you've experienced going through the diagnosis process. And maybe offer any suggestions to make the process smoother for the next poor soul. Maybe find information from social workers or psychologists regarding dealing with terminal illnesses and how to treat patients as a whole person, not just physically...but mentally and emotionally...I don't know.

 

[puzzled36]

Jamie, I know exactly what your going through. I was told by 2 ALS experts, "you do not have ALS, probably stress or BFS" Then my single fiber EMG came back abnormal and was told "its probably myasthenia, I still dont think you have ALS" Then my biopsy reults came back generalized atrophy but no group type atrophy which you can find with ALS. Speciaist still blows everything off. If I end up being right and he ends up being wrong I'm definitely telling him about it. They quickly disregard your concerns and reassure your family its just stress, making life all the harder because then your just basically giong through all this solo. If your right (which I hope to God your not) tell them not to be so single mindedly focused on anxiety/stress and listen to their patients. They may be doctors but nobody knows your body better than you. Good luck, I'll be thinking about you.

 

[Jamiet]

I've called them 3 times in the last week. So say they don't have my results, but she would have the doc call me when they came in. She did tell me they don't give results over the phone. BTW - the 19th will be 4 weeks since biopsy.

Ok, that's fine, but i told her, i don't want to drive 4 hours for good or bad news and we all know something is wrong. I'm a big boy, i can handle it.

Well, we are into Wednesday and still no call from the Doc.......In my eyes...this is not a good sign.

Jimercat, i go to Houston Methodist ALS Clinic, they are the top clinic between Atlanta and Arizona and the Dr. i am seeing, is the Co-Director of the clinic and #2 to one of the top ALS specalist in the country.... Yes, it reassuring, but then again, i look at myself and say...hmmm..she's wrong.

rgds,

Jamie

 

[vmd]

puzzled36:

Ditto. No one lives with your body 24 hours per day, except you. On the other hand, I would also trust the specialist unless you have proof otherwise. In which case, that is good news for you. But if it's not ALS, what was their diagnosis?

Jamie:

Like you, I'm playing the waiting game. Considering the experts have stated the probability of you having als is low, I would go with that. Since they are the experts, they are more often going to be right than wrong.

 

[brooksea]

Well it looks like you just have to wait. I would hope that if you don't have ALS they will offer you a definitive diagnosis of something that can be treated. Please let us know!

 

[saska]

Well, Jamie, you have to tell them what's in your heart. Whenever I tell myself that, I write down what I'll want to say, then sputter through it when the time comes. But, I would definitely let the doctors know the affects their cavalier attitudes have had on you and yours, not only for yourself but for their other patients as well. Hopefully, they'll take it to heart.

It is unconscionable to me that doctors can be so dismissive of their patients' concerns, particularly in your case where you have done the research, and are knowledgeable and intelligent. As for friends and family, probably a big part of their assertions of "it's all in your head" is fear -- they can't wrap their minds around the possibility of something as heinous as ALS.

My prayer, too, is that you're WRONG WRONG WRONG about ALS. What time is your appt on Monday, so we can be thinking of you?

Sharon

 

[ltr]

Jamie - the doc isn't returning your call because your biopsy is positive. You know that. The one thing you don't know is what it is positive for. Do some more homework. You know of at least 2-3 other things that could be causing your symptoms. Get out a notebook and pretend it is positive for one of them. Write down what you want to know about that disease.

It doesn't do any good to confront them about why they couldn't diagnose you earlier. I have been sick longer than you and they still act like it's not a big deal, even with my positive biopsy. In fact, I am not as intriguing anymore and I was pushed through the visit the last time as if some of my symptoms were still all in my head.

I hate to give you the tough love, but don't call them again. They are not going to tell you about a positive biopsy over the phone. Don't try to make them, but spend your time doing what I asked you to do above. I had to drive two hours and was angry I couldn't come prepared because I didn't know what it was positive for, so think of other diagnoses, besides als and write down questions.

Monday is a big day for all of us because of you! With love~Leslie

 

[patricia1]

You have to be forceful .You call the office say I will not hang up until I talk to the doctor or office manager you must be firm I was a nurse in a office and the squeekie wheel gets oiled Dont take no for a answer.Theres is no way the results isnt in It may be lost That happens Pat

 

[ltr]

Forceful works a lot of the time, but in my 15 years of working at the hospital I found that most offices/clinics/hospitals won't give positive results over the phone. My clinic said that their policy was to meet with the patient when I tried, that's why I wrote Jamie the long post, so he could try to be prepared. I hate to think that anyone on this forum got a result over the phone! That would be rotten. Leslie

 

[Jamiet]

Leslie,

I have to laugh at your answer...i love you man, you are good.

My appt. is at 2:00 yall.

thanks for all your support.

rgds,

Jamie

 

[ltr]

We will all be on pins and needles (ooooh, bad metaphor on this forum!) waiting for you to get home and fill us in.

I have a feeling we will be discussing steroid craziness and usage next, I just know you'll be okay. I'm praying for it. ~Leslie

 

[paulzeee]

All the best Jamie. Where I come from there is no doctor that will give you any results over the phone, positive or negative, you always have to go for follow up in person.

 

[CindyM]

Jamie-take Leslie's advice. That journalism degree is paying off. As for why they won't give a DX sooner, I wouldn't want someone's guess driving their decision to tell me I am terminal. And since there is not definative test for the disease, but relies on clinical observation, they are going to dot verey "i" and cross every "t" before telling you. Rightly so, don't you think?

Good luck, my friend. Anything other than ALS, is what I always hope for! Cindy

 

[Willow]

Just wanted to wish you luck for Monday but also give my two cents worth regarding Dr.s, tests etc.

I had been waiting for a doctor's requested referral, (3 diff docs wanted a particular doc to do a recheck and biopsy). After a little over 6 months of no one getting ANY response from him at all, my GP put in a call to someone else, who in turn met with me and did the biopsy (after a few problems). After the biopsy the original requested doc did finally see me and was quite "put out" that he was not part of the biopsy procedure.....so miffed was he that he had the lap top there to pull up my results, if they were ready, but told me.....NO, I didn't do the biopsy you'll have to wait.....and he left the room.

I Also wanted to add that in my case.....a biospy certainly hasn't been the "be all test" that would clear this all up. I have had two EMG/NVC both showing problems, one was done here which was quite short, the other done by the neuromuscular clinic and was about 3 hrs long....and both showed problems. I was actually on the emg table with the neurologist, he was just starting to explain some things whent he technition came in with my biopsy results. The results were NOT what the neurologist expected (showed neuro type stuff and myopathy type stuff) and he litterally stopped everything and his words were "okay we just need to stop everything and get our act together" I was pretty stunned and asked what was next and he just said he wanted all the tests and samples to be sent to his people who would go over everything and then they would get in touch with the doctores here..... THat was over 2 months ago and I am still waiting. So even though you have had the biopsy.....it may or may not give you a better picture.....I know for me it hasn't and that is difficult, I thought I would have some answers by now....but only more questions.

I should also state that I live in Canada...not the US and the medical systems are completly different. We have some incredibly long waits to see specialists here and more times than not, in our area there just aren't specialists....so there can be lots of travel for appts. We also have very limited test facilities (MRI etc.) so again there are long waits, the average wait would be 6-8 months. I have been waiting almost 3 months for the MRI that the neurologist at the clinic requested after our session.

So Jamie....you have called and expressed your concerns about the results......all you can do is wait for the appointment and tell them how difficult it made the waiting. I know here if there is nothing wrong.....you simply don't hear from them at all. If you do hear from them, the secretary will only say that the results are in and that only the doctor can discuss them with you.
Good luck on Moday.
Sorry this got kind of long