Switching Neuro: Is it Necessary?

[LisaQ.]

Hi Joel,
Whether or not to get another neuro is your call. You will have to start all over again with history and physical, etc, which may be inconvenient, but the bottom line is, your wife needs to be comfortable with her doctor. The patient/physician relationship needs to be based on trust and respect, so... if that can't be achieved with this guy, then I'd say a switch is in order.

I'm guessing there must have been a miscommunication (language barrier, perhaps?) or misunderstanding, because if he isn't repeating the emg, he must be pretty certain this isn't **S.

Mayo would be a great idea, regardless, because she does have lots of other stuff going on, (with her history of injuries and spinal surg, etc,) and they have an entire team of docs who can work together seamlessly and give your wife the most thorough and comprehensive assessment and diagnostic work-up as possible.

A blood test isn't going to diagnose **S, but may reveal other conditions like thyroid disease, autoimmune conditions, connective tissue disease, etc, which might also explain her symptoms.

Hope this helps,
Blessings,
Sue

 

[jsageurge]

I agree with Suzi with regard to him not even doing another EMG. When you said that she had twitching and cramping for years, and a normal EMG in the leg with problems, I couldn’t see why he even mentioned it. I wish you the best in resolving her leg problems.

 

[RamirDl12]

I would suggest that both you and your wife take some time before making the decision. Let things cool down first. If after a few weeks you both feel the same, then I'd make the switch. Ultimately, it is Lisa's decision.

For what it's worth, if your schedule will allow, I would suggest that you attend the next appointment with Lisa. It really helps to have someone else in the room. Sometimes patients are so anxious that they miss things being said by the Doctor. Having a spouse come along really helps. Most Doctors wouldn't have a problem with it.

Dale

 

[JennSwish33]

Your suggestions are well taken. I've just gotten off the phone with Lisa's doctor (BTW, I wanted to attend the initial consultation, but Lisa told me it wasn't necessary). He told me that the results of the CK (Creatine Kinase) test were elevated.

We did calm down somewhat last evening and decided to continue to see her neurologist, while waiting to find out if Mayo was going to be an option. We're also going to see her personal doctor this afternoon. I'm hoping she can suggest some sort of counseling for Lisa to help her cope with whatever her diagnosis may be.

Anyway, Lisa's doctor agreed to schedule an MRI, but wants to put off another EMG for 4-6 weeks. Mayo may be the one to do this test.

Joel

 

[BandersnatchF]

Typically, CK isn't extremely elevated in ALS. It can be moderately elevated or normal, but extremely high CK levels are more likely related to muscle disorders. Besides, as others have pointed out, sensory symptoms like tingling and numbness point towards sensorimotor neurological issues, and ALS is only motor.

Good luck with your wife's diagnosis!