Preliminary diagnosis overturned by 2nd opinion

[Kerbear]

It seems that this roller coaster is finally coming to its last stop, 21 months from the beginning of emg/ncs and referral upon referral we find ourselves in limbo but with the advice of those on this forum with a competent Dr.

When I read through posts I see a very common theme the g is very important and so is a very qualified physician.

The new Dr did repeat the emg for the fourth time and it is definitely abnormal, but after he read through the nightmare of my medical records threw out all of the previous work and spent 2.5 hours going through every single detail. Above all else he made clear that he wants answers sooner than later.

Just going to a neuromuscular doctor at a big fancy hospital does not mean you are seeing the right Dr. I made the mistake of qualifying my Dr. Based on the big name hospital I was going to. Looking back the dr. I was seeing just ended residency and is working with children with MD as a clinical interest.

I am quite nervous about the muscle biopsy next week and the results and not sure what to expect. It does not seem that common to have the biopsy so I am wondering how many people have had this done as part of the work up. Does this mean we are looking elsewhere for a cause. If anyone has had muscle biopsy can you tell me what use it is in diagnosis.?

Thank you

 

[Nikki J]

I am glad you feel you now have a competent neuromuscular doctor. You know how we empasize the need to have your diagnosis made by such a person and confirmed by another. You also bring up a good point- that one should look up the credentials of these people. I would not necessarily dismiss someone who recently finished a neuromuscular fellowship ( there is a doctor at my clinic I recommend who is a recent fellowship grad) but as you say , a clinical focus in another area would give pause. Usually there is information readily available on the hospital websites that lists education including fellowships and clinical focus. If not the state licensing board may have information and often a web search will show helpful items including any published papers

As you say, muscle biopsies are not routinely done and yes, when they are it is because the diagnosis is unclear and they are looking at other things. So good news I think. There are people here who have had biopsies so they will chime in I know.

 

[lgelb]

Kerbear, a muscle bx is used when a myopathic process of some kind is a possible diagnosis. That would mean that the muscle is attacked directly, instead of the nerves that control it.

Possibilities include muscular dystrophy (there are several types that can present in adulthood), myositis (ditto, inflammatory diseases) and rare d/o like myotonic dystrophy. There are also "better" adult MNDs like SMA.

Ask your doc straight up what differential(s) s/he is considering. It's an invasive procedure and you have a right/responsibility to grant/withhold consent given all the facts. Which muscle are they looking at sampling?

Best,
Laurie

 

[Kerbear]

The left tricep he made sure i knew which one and did not do emg testing on it. He said he did not agree with the previous testing said their numbers did not match their reporting so he did it himself.

He tested my left bicep, left upper leg, and lower and then did the same on right he also did my back which I will admit was a first and it hurt. The nurse told me the results won't be back by the may clinic so I will go in June, but that she would ask him to call me when the results did come in.

I think that I was told pls because of the slow progression and lack of atrophy back in September .. My last time of seeing the Dr not the NP, and the 3rd emg was done.

My aunt who was with me I have to tune out when testing happens so I can focus on being a compliant patient. That he said that each muscle was abnormal, and that the muscle should be silent at rest mine are not.

 

[Atsugi]

Many people say it takes a long time to get EMG results. Does anyone know WHY it often takes so long to get EMG results? I don't recall having to wait much at all.

 

[Nikki J]

I think Kerbear was referring to wait for muscle biopsy results? As to EMG there is no reason I can see for a long wait. The EMG doctor knows immediately as s/he is doing the test. S/he may not be able to tell the patient if another doctor ordered it because of protocol and not have done the clinical exam to put things in context but all that needs to happen is for a formal report to be prepared and sent to the ordering physician. The EMG doctor could have a backlog I suppose but in this day and age the prepared report must be faxed or sent electronically I would think. I would expect really bad results to be communicated quickly. If the emg doctor is the treating doctor then results have certainly been given while the patient is in the EMG room

 

[lgelb]

Kerbear, all due respect to your aunt, don't tune out when it's your body on the line. Be present.

Mike, I think what people are referring to is like w/ any other test, some docs want to wait until "all the results are in" or do a separate appt. to go over results, and as Nikki says, often examiners are not the primary neuro since it's a specialty skill.

All, you always have the right to ask for written reports and results as soon as they are available. Sometimes you will get stalled if the doc thinks you will take them out of context, but you can still ask, and communicate that you don't want to wait 2 months or whatever for an appt. In the vast majority of cases, you can what you need when you want it, by being politely persistent, like anywhere else.

In your case, Kerbear, if the plan is for him to call you, and this is the guy you trust, no harm in that.

Best,
Laurie