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pebbles

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Hi, I've been seeing a neurologist for initially a weak left hand/arm then it progressed to weak foot and leg and now it's been close to two years. At first when I initially showed her my tremor (pressing a finger against a wall) she told me after a clean emg that I had tremors. Next scheduled visit she ran a brain mri (clean) but I showed her my new constant big toe tremor and told her of my numbness on the side of my calf. I have, and continue to have all over body constant twitching and occaional buzzing and occasional finger/toe twiches. I also have SLIGHT numbess on my left hand and left outer calf side. She didn't seem too concerned about my toe twitching but told me to follow up. Next follow up visit we did a urine catch for heavy metals (normal) and on the return visit (now going on two years she noticed hyper reflexes, said I'm dragging my foot (I may or not be my walk has always been off due to scoliosis in my opinion) and that I've progressed. This time she seemed like she woke up and noticed something. She kept telling me (as if I didn't know) "oh, you've progressed!" so in light of that she said if the spinal mri comes back fine she would refer me to Madison WI. I am VERY frustrated. EVERY visit I asked her what she thought it was. Every visit she would say she doesn't like to "generalize". I pointedly asked her, MS? ALS? Anything Sinister? and she said no. This last time when I was going to get her to at least narrow it down and I pressed her she said it may be a sclerosis. I have my referral and maybe Madison will be better but I don't think my situation seems complicated. Any advise as to what this may be? Anyone? I'm a 43 y/o female. Any feedback would be appreciated. Also, (and I may be venting) when I called Madison the receptionist said "oh your being referred for the second opinion". I lost it..I asked her what the first opinion was! Do doctors withhold information? Is that legal? Anyhow the receptionist said it was for left hand paraplegia (I know I spelled it wrong) I also have muscle soreness. Mostly lately my left glute but sometimes my whole leg. thanks!
 

CB1977

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You certainly have a right to know what is in that report, I would request a copy. They have to give you a cpoy if you request it.
 

pebbles

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Thanks, I was going to ask the Madison office for a copy. I just don't know that I want to deal anymore with the doctor or her office. At the last visit the doctor told me if the spinal was clean she was going to refer me. Fine, I accept that, but when the receptionist calls to tell me it's clean she wants to schedule an "office visit" so the doctor can refer me. I hate to say this but it seems she likes to bill for office visits. Who requires office visits for referrals? Ugh. I hope Madison will be different. At least mentally I'll have a time frame of when I need to move on...but that goes back to my original question....How long does one stay with a doctor to get diagnosed?
 

lydia

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I don't think there is an answer to your question. Some diagnoses take a very long time whether you stay with one doctor or switch or consult several...I understand your frustration and hope you get some answers at Madison. I wanted to point out that you still might have to ask original doctor for copy of report she sent to Madison. I know my doctors won't give me copies of reports written by other doctors, unless those reports are in response to something they themselves ordered. For example, I asked my neuro's office for a copy of the report/referral written by my GP to her when I was first sent there, but they told me I have to get that from him (GP).

Take care,

Lydia
 

pebbles

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Thanks Lydia, I guess I'll request a copy from the original neuro. It will give me something to do while I await the next appointment. I'm trying not to be impatient. I don't know if there are tests I should be requesting to help rule things out for peace of mind. I have thus far been "going with the flow" but two years later I have only a diagnosis of tremors. (Which I think is secondary to my only main concern and chief complaint of weakness of left arm and leg) But thank you for your help!
 

BethU

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Pebbles ... your experience is shared by a lot of us. It just seems to take soooooooooo long. If you are uncomfortable with your present doctor (and I wouldn't blame you), you could certainly ask to change doctors, but I suspect that once you see a specialist, you should be able to get a clearer picture of what's going on. Most neurological problems are just way beyond the expertise of the average generalist.

I don't think the following applies to you (I hope you don't have ALS, and it doesn't sound like that's likely. There are too many other things you could be dealing with), but I wanted to post it for all those who are climbing the wall waiting for neuros to make up their minds:

In the May MDA/ALS Newsmagazine, it says:

Typically, the longer it takes to receive a definite diagnosis from time of onset, the better the odds for longer survival. A short interval from onset to diagnosis is associated with shorter survival.

The article is called "Factors in Survival." Cold comfort is better than no comfort at all.


Speechless in LA
 

pebbles

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Thanks for that encouragement! She is a neurologist in a small town so I thought her referring me to Madison was a big move, but I found out the neurologist she is referring me to is another general neurologist. Again, my confidence in this doctor is waning. Why do you think the lateral referral? I hear of specialists but I don't know if I qualify and if I did for what type. My thinking is if I go to a specialist my diagnosis might be more forthcoming. I will stay with the referral because it was a three month wait to my appointment date and about 45 days away!
 

BethU

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I bounced around among three general neuros with 3 different diagnosed, then bounced around among a gazillion more experts at MG and ALS university clinics. The "system" (is that what it is?) is nuts. But neuro problems are just very, very complicated.

Hang in there.
 

hopingforcure

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I love what Zaphoon said on another post.. He went to the guy that can only diagnosed you when you are in stage 5 of something. Seem's like that is how this NEURO stuff tends to work.. Took me two regular Neuro's, but only a short visit with the ALS specialist.. But boy did it take a while to get to the specialist. Funny thing is I was sure I had ALS from day one. Wish now could of lived without knowing...like my doc's did...
 

pebbles

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I'ts a little reassuring to hear that I'm not the only one who is taking a little longer to get some answers. I guess it is the system and I'll have to figure out a way till diagnosis not to get too frustrated. Hopefully, if nothing else, next doctor will be a little more giving of information, opinion or just a bloody guess. I'll take a vague idea of what they think it is. May I ask you, Hoping, if the second neuro (since that's what I'm on) was the one who sent you to ALS specialist and was it your request or the docs idea? Thanks
 

Kevinski

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time to diagnosed

Hi i had been having symptoms since 2006 when i first saw my neuro guy who is tops in his field which is motor neuron disease ,he told me there is a good chance this is what i have ,but he is very cautious at giving a firm Dx until all the criteria is met.So it took until July 2007 to be able to give me a frim diagnosed of bulbar onset als.he told me some other neurologist would have given a diagnosed a long time ago but they would have been wrong to do so given all the criteria had not been met until my last emg and nerve test.So yes it can take a long time but am glad he was not quick to diagnosed me
 

lydia

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I like Beth's correlation (the longer it takes to diagnosed the better the odds for long survival). I know several of us are just waiting for whatever ails us to "declare itself" with some obvious symptom. Take your sweet time, I say, it improves the odds!
 

Sammantha

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Listen to BethU, there are two options really.. One, you literally cant move a finger, hand, foot etc or your speech, breathing or swallowing is so bad they cant deny it. That is how you will get the diagnosis of ALS, AFTER they rule out everything else. The other option is to report to your neurologist when new things become affected, they will observe this and unless it leads to one of the above you wont get a diagnosis. Its a catch 22, these docs do not want you to have ALS they know how horrible it is and they will not diagnose you unless they absolutley have to and who can blame them, although they should help you with any issues you are dealing with in the meantime.
 
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