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?

Hi Megan:

As far as we know his tests are negative for Acromegly.

I think she did one last test for it and we haven't got the results back yet. But she has almost ruled it out. whew!!!!

She is really thinking he is pre diabetic and wants him to lose 100 pounds.

That is pretty overwhelming right now but we will certainly try very hard. I can stand to lose some weight too:)

He was to get an appt. with his family dr. and get this last carb test done but he can't get into see him until Dec. 15, so I expect that we will get a lot more news then. I hope.

Nancy

Good goal!
 

Hi Nancy,

That's good news about the acromegaly.

I guess the idea of losing weight together for a very good purpose will spur you both on!

I wish you and your husband well in this goal to achieve better health and hopefully see the PN disappear or at least lessen, eventually!

I am sorry about this news but at least he has some direction possibly. Has he been to an endocronolgist or someone who deals with diabetes or is that what the family doctor will do too? I encourage him to see a nutritionist. When you have nutritional health issues they can really be so key in recovery Though of course find one that deals with the issue at hand.

Well, you are making some progress?
 

Do keep in mind that being 'pre-diabetic' does NOT mean you've got to commit to a life on lettuce! My Dh is Type 2 and has learned lots thru diabetes classes sponsored by our local hospital&diabetes assn, which were covered by our insurance w/a very low fee.
I guess it depends on how much your own DH wants to admit that he mite have a problem? Because of these classes, my DH lost about 50+ lbs just by changing what he 'nibbles' and portion control, plus minimal meds. Really.
Remember you can't police him? You can provide the good [healthy] stuff to 'nibble' or other stuff. Maybe both. But IF he is truly aware and wants to live and maybe even feel better....well it's all going to be HIS CHOICE! You can't be the food marshall here- that won't ever work, and you both would be miserable for it.
PN damage issues from diabetes can be halted, slowed down or eliminated due to the lifestyle changes, but it's got to be up to the principals to make the changes. No one else can do it for them. Plain and simple. You can only be there to HELP. As best you can, when you can. :hug:'s - j

The dr. did say that she wants him to see a dietitian. Is that the same as a nutritionist?

I know I can't be too hard on him, just try to help him along. I know it has to be his choice or it won't work ... or if the weight does come off it won't stay off for very long.

We have cut out the bad nibblies and have taken the salt shaker off the table. Is celery salt a better option? for just a little taste? We are also trying to stay away from the potatoes and breads.

He is a little apprehensive about excercising because of his sore feet. Hopefully he can start very very slowly and work up from there.

Thanks for your help

Nancy

I know there is a difference but I can't remember and I have seen many in my recovery. Hopefully his doctor can give him a referal. I really feel with one it is very key and I mean this from the heart to have one who really deals a lot with the issue at hand. It can make a huge difference. It is more I think getting a plan that is a road map to make good choices based on a persons needs and to work on the where and whys one struggles. Also it can help see emotional connections too. Hopefully if your husband starts making better changes the feeling he gets(better and less pain) it will give him the motivation to keep going.

Hi Nancy, my PN was caused through prediabetes & i was low in B12 but i am fine these days, my approach was low carb dieting and reducing the size of each meal & cutting out all sugary carbs like candy & other unhealthy snacks & no alcohol, there is no need for him to hurt whilst exercising, there was no way i could walk the pavements, it just hurt to much so i opted to go to our local all weather swimming pool and just walk up and down the lanes [ early in the morning when hardly anyone was there] even a lousy 30 minutes a day can make a huge differance in the long run, also a suitable muscel building program tailored to his personal health is a great way to get rid of excess glucose, it helps to unlock the insulin receptors, but just small steps at first building up slowly over time.
best of luck
Brian :)

Thanks everyone for your thoughts and suggestions.

His B12 was low 239 ... he has been taking b12 for a few months now. We live in the country so going in to the town pool would be a little inconvenient but within a years time we expect to move to town so will look into it then and a muscle building program too. What we hope to do for a month this winter is go to Florida and we usually rent a house with a pool so that would be a trial time to see if that would be something that he could do.

I think small slow steps is the only way to go otherwise it is too overwhelming and he probabley won't stick to a lifestyle change and end up in the same spot he is now. W farm and he has always put his heart and soul into his work, I tell him he job now it looking after himself.

Thanks again
Nancy

Hi Everyone:
My husband got his diabetes numbers back from the dr. yesterday, he now for sure does not have diabetes. In fact the numbers were better than in Aug.

So I guess he is back to square one. He will definitely stay on his weight loss plan as he has lost 20 lbs since Oct.

The neuro is out of her office until the New Year so we will call then and set up another appt.

In the short time we have been reading the messages here we have learned so much.

We would like to wish you all a very Merry Christmas and a Happy Healthy New Year.

Thanks