Old 12-26-2012, 12:57 PM #16 (permalink)
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Default Re: What kind of doctor to see?

Sorry 'bout the neck/jaw cramps- I get them too- thankfully the intensity of the pain is short lived but the aftermath of feeling bruised can last hours or a few days. I find heat helps me. Either a heating pad, or a neck support bean bag heated in the microwave.

Hope the new GP HEARS you! Will think of you on the 2nd- let us know how you fare.
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Old 12-26-2012, 01:28 PM #17 (permalink)
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Default Re: What kind of doctor to see?

Thank you, Ottawa! A microwave beanbag is an awesome idea. I shall go buy one today.

I will definitely check in a again after my appointment.
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Old 12-27-2012, 12:00 AM #18 (permalink)
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Default Re: What kind of doctor to see?

Petlover you need to be proactive and assertive. I have learned that lesson with my husband's situation. The GP will have a basic foundation in neurological disorders, but unless she has had a special interest in neurology her primary role should be to refer you to a neurologist who specializes in neuromuscular disorders. My hubby's GP was wonderful but basically thought "carpal tunnel" and referred him onto a general neurologist. Hubby had that pleating and loss of thenar muscle in his rt. hand and lost strength and coordination in picking up things or turning keys etc. First neurologist said EMG and nerve conduction was fine--come back in six months if worse. Hubby did repeat visits and testing with him for over 2 1/2 years. By the time we got assertive, he basically could not use his right hand to hold a coffee cup or use eating utensils and started to develop drop foot. He even had a referral for and received nerve release surgery with a d x of carpal tunnel by the first guy. Specialist neurologist knew he had CIDP--MADSAM within 2-3 weeks and he started treatment. However due to us being passive he had to take early retirement as an airline pilot and lost his career. It should have been picked up by the first neurologist 2 years before. Be assertive please. I am a retired RN and was far too respectful of the medical system. Not any longer. Ask for you need please. Good luck.

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Old 12-27-2012, 12:19 AM #19 (permalink)
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Default Re: What kind of doctor to see?

Petlover my post to you went to moderation. Basically be assertive and ask for referral to a neurologist specializing in neuromuscular disorders. A good GP knows when to refer, but often you need to go prepared with a name based on some research you have done. Good luck and my post will appear in the next few hours.

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Old 12-27-2012, 07:05 AM #20 (permalink)
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Default Re: What kind of doctor to see?

HI

Even though I would personally want to see a neuro....I think you should also remember that very very often hand problems are related more to pinched nerves, cubital tunnel and carpal tunnel---so try to hold on to that while you wade though the process of being checked out.

Good luck to you.
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Old 12-27-2012, 03:22 PM #21 (permalink)
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Default Re: What kind of doctor to see?

Thanks, Laurel and notme. We have a neuromuscular specialty clinic at our local teaching University, so I plan to ask for a referral there. Notme, I am also having problems in my feet . . . and no sensory symptoms. I had autoimmune issues several years ago. While the symptoms didn't look like what is happening now, I can't help but wonder if I am having some sort of autoimmune issue, since I'm prone to such things, even though my ANA titer was not elevated. I know ANA only detects a small number of disorders. I suppose time shall tell.

I am planning to be much more assertive this time around than with the last doctor. The more I think about what he said to me, the more angry I get. I think it was condescending and disrespectful. Ugh.

Anyway, I really appreciate the people on this board taking the time to reply to the questions of strangers . . even in the face of their own or their loved one's illnesses.
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Old 12-27-2012, 05:19 PM #22 (permalink)
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Default Re: What kind of doctor to see?

My husband's disease--CIDP--is autoimmune. He has a motor type variant of CIDP and has no sensory symptoms which is very different than many people with CIDP. We were very placid and accepting with doctors for too long which resulted in all the damage that occurred with hubby. We accepted vague statements about nerve impingement and carpal tunnel as being gospel since it was a neurologist speaking. But when we finally had had enough and paid for our referral to a specialty referral clinic, that specialist took hubby's history and even prior to his exam said "none of your symptoms fit nerve impingement or carpal tunnel. Why did they do the surgery?" He examined my husband and all within a half hour said "you have a progressive muscle atrophy happening and need to see another neurologist as soon as possible". I agree that many cases can be simple issues versus rare diseases. But we all deserve competent comprehensive assessment and we deserve respect. I tend to be overly assertive with doctors now--so have to try to sit back and listen. I still have so much anger about what happened to my husband. And then we had to fight for so long to get treatment as his treatment with IVIG costs $10,000 every 3 weeks and they tried to deny this to him as in the beginning IVIG was not standard treatment for CIDP. Sorry for babble, but we do have to look after our own best interests as the medical systems are over loaded. Knowledge is power if you temper it would good judgement.
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Old 12-28-2012, 01:29 PM #23 (permalink)
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Default Re: What kind of doctor to see?

Wow, Laurel, I'm so sorry about your husband. That has to be so frustrating. And it really sucks that he went through an unnecessary surgery to boot. I'm glad you got the IVIG covered eventually, and I'm glad he has you as an advocate.
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Old 01-02-2013, 07:20 PM #24 (permalink)
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Default Re: What kind of doctor to see?

Hi everyone. Well, I saw the new GP today and WOW what a difference. Within about 2 minutes, she said "you need to be evaluated by a neurologist". She made a phone call and I have an appointment next Thursday. She did a kind of brief neurological exam, and I noticed something that I think is a good thing with regard to ALS . . . my reflexes in my knees and ankles were pretty hard for to even elicit. She said I had "slight" reflexes. Not sure that that's necessarily a good thing in and of itself, but it seems to point away from ALS. Another kind of odd thing . . . She asked me to puff out my cheeks, and my left cheek doesn't really puff out! It was so weird! Afterwards she asked if I'd had any cramping or twitching on that side of my face. I told her that I had a little in my chin on that side, but that was all. Super odd. Anyone ever had that happen or know what it means?

Anyway, it was nice to have someone not just dismiss me. Oh, and the neurologist told her not to run any more tests and just send me to him. He is a general neurologist, but she said that she would prefer I see someone quickly then get a referral to a specialist as needed. I didn't mention that I was worried about ALS, by the way, as I didn't want to try to lead the conversation in any particular direction.
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Old 01-02-2013, 07:59 PM #25 (permalink)
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Default Re: What kind of doctor to see?

Happy New Year and glad you had a better appointment; it's great you don't have to wait too long for a neuro consult.

I cannot speculate on anything medical. I will tell you, at my last ALS clinic visit, I asked the physician to explain reflexes to me.
So, we had show and tell.
Mine were super fast with a big kicking jerk. The nurse was next on the exam table, and hers were a "normal" reaction. Next up, the doc. was on the exam table, and the nurse wielded the hammer. Turns out the doc. had literally no reflex. Not on the knees or wrists either. She told me she's always been like that and it's not at all unusual.

In any case, I'm sure that you have much more knowledge than I have about medical subjects, but thought you'd enjoy the anecdote. (another example of a doc tor, of a certain age, going above and beyond with an explanation).

Good luck next week.
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Old 01-02-2013, 08:10 PM #26 (permalink)
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Default Re: What kind of doctor to see?

Thanks, Elaine. That's awesome that your doctor would do that. I love doctors who take the time to actually talk to you. And good to know that it's okay to be reflexless!

I will definitely update after I see the neurologist. Interestingly, it's the same neurologist I saw when I was in the process of being diagnosed with the autoimmune thing several years ago, so he probably has old MRI's and such.
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Old 01-03-2013, 08:25 AM #27 (permalink)
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Default Re: What kind of doctor to see?

Happy to hear about the new GP! What a difference!

Good luck with the Neuro, will be thinking about you.
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Old 01-05-2013, 10:02 PM #28 (permalink)
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Default Re: What kind of doctor to see?

K, I'll be going to see the neuro soon enough (Thursday) but since my visit with the GP, I am really curious about something. As mentioned earlier, she had me puff up my cheeks with air, and my left cheek hardly puffed up at all. She also had me stick out my tongue. I did that in the mirror today (yes, I am a polite adult and rarely stick out my tongue ) and it deviates to the left side fairly noticeably. It''s not just the tip of my tongue, but the whole thing comes out at a fairly steep angle.

Has anyone else had this? I am really doubting ALS, as my reflexes were quite diminished, but I'm wondering if anyone knows of things that can cause this pattern of what is, I assume, weakness in facial muscles? My husband is worried that I've had a stroke or something, but it's not as if my left side is paralyzed . . . it's just this weakness in the left side of my face, by left hand, and my left foot. I have cramps and twitching on both sides, but everything on the right still seems to be working okay. I will try not to fret too much before Thursday (and really have no time to do so, as I am co-hosting a national conference beginning Friday), but I find it quite curious.


Thanks in advance for your kind and patient responses to my post. Hope everyone is having a good weekend.
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Old 01-05-2013, 11:00 PM #29 (permalink)
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Default Re: What kind of doctor to see?

Puffing out your cheeks and having you stick your tongue out and move it around are tests for cranial nerves. Many reasons for abnormal symptoms such as disease, clots, lesions on the brain etc etc. Try not to second guess what might be causing your symptoms--there are just too many possibilities. The most important thing is to get yourself to an emergency room if you experience any of the following: change in vision, weakness in face and trouble swallowing or smiling, sudden headache, dizziness. Basically any suspicious that you may be experiencing a stroke. No, I don't think that is what is happening to you, but I'm just suggesting you stay on top of things since you don't have any answers. Take care.

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Old 01-05-2013, 11:24 PM #30 (permalink)
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Default Re: What kind of doctor to see?

Good advice, Laurel. You're most sensible! LOL! Wow, it's hard not to second guess this stuff. It's just all so . . . weird!
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