First Neurologist Appointment
 

Hello everyone:

My husband first neuro appt. is this Fri. so we are wondering if there is anything he should listen for or ask about right off the bat.

His appt was suppose to be in Jan. 09 but he got in on a cancelation after waiting for about 3 months.

Just a little background, he has had numbness in his feet and one hand. He feet are sore (he dosen't take any pain meds. only a few tylenol now and then) and feels as if there is a cramp going to happen in his feet any minute. This has been going on for 4 or 5 yrs now. Our last family doctor did 2 cortizone injections, the first helping the 2nd did nothing. He then said there was nothing he could do, to just live with it. He also has orthotics.

We now have a new dr. and she has tested for B12 deficiency and it come back at 239. He is now on B12 shots once a month and 2000 mcg Methyl sublingual per day and 1000 mg cyanacobalamin. He has not seen much improvment yet. ( he has been taking the b12 for about 6 weeks. He also has an appt. for a EMG study in Sept.

Thank You and any help would be greatly appricated.
Nancy

Hi. First before the apt I would try to get all his medical records and tests done to give to the neuro. You should keep a binder always. So for ex when he gets the emg make sure you get the results. There is a lady here who has a very helpful link www.lizajane.org that you should look at. Neuro's I have not had the best time with but mine did run a lot of tests and that is a long frustrating process but then can direct you to other specialties. Who did the b12 testing? A gp? How is your husband pain wise with over the counter? I ask cause if he needs more help then possibly to ask the neuro cause they don't always offer. Lastly after many many apts I have found it is key to be able to describe your pain and symptoms as best as you can. Also to come with a list of ?'s because in the moment things get forgoten. There is a lot of people her with b12 issues too so they will I am sure chime in.

Hi:

Thank You for your reply. We live in Canada and we don't have access to our medical records or at least I don't think so, we will ask.

The doctor we are with now will read you the results when you go in for your appt. but the records all stay with her and for the most part if it is a routine test like a CBC they tell us that if you don't hear anything from them, then it is ok. No new is good news I guess. Our last dr. did tell us our results one way or the other - good or bad.
Maybe as they are reading them off I will try to write them down and that way we can start our own history.

Our family dr. did the B12 test. His feet are sore so maybe the neuro will prescribe something. I was reading about Lyrica and Neuroton ( not sure if that is the spelling)being bad for weight gain. He is having trouble with fluid in his feet now and wouldn't want more. He taking a fair number of diuretics now and he has only one kidney so he has to be careful.
Thanks again
Nancy

Ask if this neuro specializes in PN.
Most neuros don't, and don't know how to treat it properly.
Ask for a xerox copy of test results before you leave the office.
Pay for them if they charge. You should be able to do this is you're real nice to the nurse/receptionist/secretary.
B12 at 239 is really low. It should read in the 700-1000 range.
The cyanocobalamin is probably a waste of time and expense, it is not easily absorbed by the body and is excreted 99%.. The Methyl cobalamin form, sublingual - is the best form to take, and can be take in large doses without ill effect.
5000 mcgs isn't too large a dose.

I know things are a little different in Canada but may be at the apt you can ask your doc to make a copy. They always keep the original. I don't see why they would care and would think they would want you to be able to show the next doctor.As for meds there are others out there. Many of us had to try many. Make sure your husband makes the doc awar of his other issues. Does he elevate his legs? I ask cause when I had severe edema and was given dieretics I was also told to wear support hose and keep the legs up. Not sure if that would help your husband. Keep us updated

Hi:

My hubby neuro appt. was yesterday. It went very well. It lasted an hour. He is doing a bunch of blood tests.

He was open to talking about B12. I was scared that he wouldn't be. He thought that 239 of a B12 was getting low but not that bad. He is not a fan of oral B12 so it is not decided yet but he may do the injections. That being a shot a day for a week... ect. The office is 30 miles away so we will have to figure that out. It would take a bit of running or maybe we could do the shot ourselves.

Dr. had some old blood tests that he took off the systems computer that had one of hubbys glucose tests elevated. Why other drs. pryer to this didn't pick that out is a mystery. But anyways at that end of the appt. it was his best guess that he may have diabetic neuropathy.

Nancy

His receptionist/secretary on Fri. is his wife. She seems very nice. So when we go back for results I hope it on Fri.

Got the GTT back today and hubby does not have diabetes.

One question about the test.

When he first started to ask about his feet he told the dr. that he had in the last 2 or 3 yrs. went up 2 shoe sizes. From a 13 to a 15 6 E. The dr. heard that and ordered a Growth Hormone Suppression Test. It is a test for acromegaly. When he took that test it also involves taking glucose and waiting much lke the GTT. They gave him the bottle of glucose plus another styrofoam cup full of glucose, they said then that he was a big guy 6' 2" and 350 lbs. and needed the extra glucose.

For the GTT that he had yesterday he only got the bottle full.
Does the amount you get go by your weight?

This is also 2 different hospitals.
Thanks
Nancy

Hi. I am not sure if it goes by weight maybe google that phrase. Did you ask the doc? As for shoe size and I am not saying to not look into it. Better safe then sorry and at least the doc is thinking like that too and looking deeper. Anyhow I have went up one size this year. I also know that thee feel too tight but even the next size does too. I often wonder if it is just that my feet feel so uncomfortable. Again I am not saying this is true of your husband but just a thought.Let us know what happens with the results.

Hi Everyone:

We have just returned from the second neuro's appt.

She is a PN neuro and now her best guess IS that he in fact does have prediabetes if not full blown diabetic neuropathy.

She also took a bunch more blood tests.

She also wants him to do a diet of eating a high carbs for three days and then take the GTT over again.

So I guess the saga continues. We are hoping to go to Florida again and we hope that this doesn't mess with the health insurance we have to get. (we live in Canada)

Just have to wait and see.

Nancy

Results!
 

Were the Acromegaly tests ok?