New Neuro Today Need Advice
AnonymousMarch 6, 2007 at 5:49 pm
To my amazement when I called a new neuro office this morning, they got me in at 2pm today as they had a cancellation. I had been to see my PCP about my right arm tingling for 3-4 weeks and he prescribed Naproxem 500 mg (Aleve) and that did not help. So off to a new neuro I go (because of insurance).
I was a babbling idiot (where was Rocker when I needed him?) and tried to explain current problem with right arm, but I really focused on my last 10 years. He had the lab take 6 or more vials of blood, and I have an EMG/NCV scheduled for Monday. This immediate timing has me baffled – I must be some lucky dog today! Anyway, they are testing my blood for the following and wondered if anyone knew anything special from this:
CBC, Thyroid Profile, Comp. Metabolic Profile, B12 & Folate, RPR/FTA, ANA, Sed. Rate Westergren, Sensorimotor Neuropathy Profile.
This new neuro seemed surprised and puzzled when he found out the initial neuro diagnosed me with office visit then later EMG/NCV and that he sent me home that day with no treatment. I think this neuro might know something better than that first one.
He thinks my right arm problem might be carpel tunnel – hey, haven’t I heard that here as a diagnose for us? He put on the sheet I left with: 1) RUE Parethesias 2)H/O Guillain Barre Syndromoe (and he spelled it right). He did find out I have no reflexes and I could only touch my nose (with eyes closed) with one of my fingers.
I feel so insane after this today – is it all in my head??? Thank you all for being here. Don’t know what I would do without you 🙂 Is it possible that I have been misdiagnosed for 10 years? Do I have something dreadful? Or is this 49 year old body getting old from burning the candle at both ends in my 20’s? So many questions…
(Edit: P.S. I did leave him with a copy of Dr. Parry’s article and he seemed familiar with it!!!)
AnonymousMarch 6, 2007 at 11:56 pm
Sounds like you found yourself a winner. Don’t worry about anything until you need to. Let this guy do his job. From what you said it looks like he’s taking all the correct steps to get to the bottom of your problem. Just make sure you understand everything he tells you. The good neuro’s know they need to and know how to explain things in a way that all us non medical people can understand. They just need to take the time to do it. Take care – John
March 7, 2007 at 11:21 am
😮 I am so happy that you found someone to help and listen. Hopefuly this Dr. will get you on the right path. Good luck! Dawn, Kevies mom
AnonymousMarch 7, 2007 at 1:53 pm
I was sooooo confused yesterday. I am grateful I got an appointment so quickly, but it sure had me not prepared to logically explain and stress how horrible I feel most of the time. When I go back for review of all tests on April 2nd, I will plan ahead with some notes. The doc. made a comment that I don’t like – I told him my memory was not good and he responded with “well with all the drugs you are on I’m not surprised”. Oh my… the drugs I am on are because of how I feel. Oh well, I’ll keep my chin up and focus on a positive outcome. At least validation of how I feel would be nice. But I suppose this is the only place I will ever get understanding.
Thank you all for being here! ***Group Cyber Hug Time***
AnonymousMarch 7, 2007 at 2:06 pm
Here’s your hug ().Glad you finally saw a neuro who seems pretty thorough, and so quickly too.
Just a thought about his comments on your memory problem- perhaps he meant it truly as just a comment about the effects of the meds, and not that you don’t need the meds.
Best wished on getting the answers you need.
AnonymousMarch 7, 2007 at 3:02 pm
When you go back to him, see how he treats you and any other comments he may make. If you feel uncomfortable with him then I suggest that you try another neuro. I know once Frank started with Neurontin his memory was totally shot, but his Neuros and our Primary Care Dr were very understanding and let me do alot of the talking for Frank.
[SIZE=”5″]Big Hugs Coming Your Way.[/SIZE]
AnonymousMarch 7, 2007 at 5:13 pm
From the tests that have been ordered, it looks (to my untutored eye) like your new neuro is checking all sorts of things – from a complete blood count to sensorimotor neuropathy profile – and not merely focussing on one area.
Then he writes down Parethesias and H/O Guillain Barre Syndromoe (I don’t know what the H/O means).
He can spell GBS and appears familiar with Dr Parry’s article.
His remark about not being surprised by your memory problems, considering the drugs you are taking – well, if you’re taking a lot of drugs (and he’d know them) I’d suppose that it could be because of them -not that it is, just that it could be.
As to the possibility of carpel tunnel, well, given the sensations in your arm, it could be?
When my arm first went numb, it was diagnosed as radial palsy – it met all the criteria. When it happened again, they found nerves trapped or squashed or something in my shoulder area. But it happened again and the thinking started to change so I was sent to the Neuro, who said I probably sleep too heavy on my arm having been drinking. But that didn’t fit and I was nerve conduction tests and at the next appointment bloods were taken to check for a genetic reason that can cause this to occur.
What I’m getting at is, things are being checked – firstly, the most obvious and then on down the scale. A process of elimination.
I can understand how the suddeness of the appointment caught you by surprise but if he thought it was all in your head – wouldn’t you be at home now with anti-depressants and anti-anxiety drugs, having been told to worry less?
I don’t think it’s a bad thing that you talked about the last 10 years. It would have offered some insight to the Neuro. Even babbling offers insight it tells someone how horrible you feel, perhaps more so that talking calmly and rationally.
I don’t think you saw him quick in case you had ‘something dreadful’ but because he had a cancellation – and it was fate. Also, if you had ‘something dreadful’ – what does that phrase cover for you? I’d guess, firstly, the unknown. It surely doesn’t cover anything that causes death quickly cos it’s 10 years now So that’s one fear less.
If you fall over and cut your arm – you would have an abrasion, a puncture, contusion, laceration or incision. The name wouldn’t make a difference but -knowing what it was, you’d have a better chance of knowing how to deal with it. Whatever’s happening has been around for 10 years, yes? Whatever name might be given to it following tests, your symptoms won’t change but you will have a better chance of being able to deal with it.
I wish you a good nights sleep tonight and that you wake refreshed and your mind has filed the information instead of it all running around fresh and new.
God bless you
AnonymousMarch 12, 2007 at 11:42 am
Today I go in for my third round of EMG/NCVs in the past ten years. I remember it does hurt, but doesn’t stay hurting. My right arm is still quite tingly and my neck and shoulder are tight and hurt like h$!@. I will ask him if he will give me some type of muscle relaxer when these muscles get too tight.
I spoke with my sisters yesterday about my problem communicating and remembering things when I am at the doctors office. I stated it would be helpful if I wasn’t alone – no takers. Don’t ya just love a typical dysfunctional family?!?! And I left feeling like they don’t think anything is wrong with me. They just couldn’t understand why we need reflexes (as I have none). So once again I am feeling very, very grateful to have this forum.
I know to make a list of symptoms and questions before going to a doctor. This last appointment came up so fast, I didn’t have the time. I am making a few notes to give him today. Then I wait for April 2nd to review blood results and these tests I suppose. Maybe he will tell me something as he goes.
A big hug of thanks to my [I]FAMILY[/I] here that understands me 🙂
AnonymousMarch 12, 2007 at 1:22 pm
It’s sad to hear that your family is not being very supportive. GBS/CiDP can be very isolating at times. As most of us have experienced, sometimes people forget that we are sick, even though we look fine.
Your family on the forums is here for you. Please keep us posted. God bless you.
AnonymousMarch 12, 2007 at 10:04 pm
In effect, your doctor is doing blood work to rule out new or additional neurological problems. For example, if what you have are residuals from GBS, the first five tests should come back negative. However, if you have become hypothyroid, the thyroid profile should come back positive for hypothyroidism.
Here is a brief explanation of the tests:
CBC – complete blood count, which is a count of the number of blood cell in a particular volume. What makes it complete is that they look for the number of red and white cells and platelets. If the test was “with diff.” (with differential), then they will look at the types of white blood cells and make measurements on the red blood cells. Looking for abnormalities, mostly likely high white blood cell count and anomalies in the types of white blood cells.
Thyroid profile – most likely checking for hypothyroidism, which can cause many of the symptoms you describe.
Complete metabolic profile – If it is the classic Chem-7 test, then checking for sodium, potassium, chloride, carbon dioxide, blood urea nitrogen, creatinine, and glucose. If not, then still likely checking for these at least, plus others. High potassium can lead to weakness. Diabetic neuropathy is the most common neuropathy and has many of the symptoms you describe.
B-12 & Folate – looking to see what your vitamin B-12 and vitamin B-9 is. Deficiency in these, especially B-12, can cause many neurological symptoms.
RPR/FTA – Rapid plasma reagin and fluorescent treponemal antibody are two tests for syphilis. Syphilis attacks the brain, and can present with many of the symptoms you describe.
ANA – antinuclear antibody test looks for antibodies that bind to certain structures within the nucleus of the cells. This is a test of the body’s predisposition to inflammation against one’s one tissues and therefore is an indication of possible autoimmunity.
Sed. Rate Westergren – sedimentation rate, Westergren method. The sedimentation rate is simply how far the top of the red blood cell layer in a test tube of your blood has fallen in one hour. The sedimentation rate increases with more inflammation.
Sensorimotor Neuropathy Profile – a range of tests, which may depend a bit on your orders. They will be looking for specific antibodies and how much of them there are relative to other antibodies and blood components. There are lots of them to consider, and I don’t know a great deal about most of them.
When I talk with my neurologist, I have him explain all of this in detail, until my head hurts with it. That way, I will remember at least some of it. If possible, have him write it down. If not, take a tape recorder and tape the conversation and then transcribe it when you get home. You will, of course, have to have his permission.
Godspeed in this,
AnonymousMarch 13, 2007 at 10:07 am
Hey Sisters & Brothers,
Thank you so much for your thoughts. Mark, I sure wish you lived closer 🙂
My past blood work has always shown an elevated white blood count. My PCP doc sent me to a hematologist a few years back and he concluded it was inflammatory conditions to make my wbc high and that was it.
For yesterday, man did that EMG hurt really bad – especially in my hand between thumb and index finger. The neuro. was really great on his bed side manner – he comforted me well. I asked him about a muscle relaxer and he wrote a rx for 10mg flexoril. He asked if I was taking 50 mg of amitryptline instead of the 25mg I had been on – I did not remember him telling me that last week. He thought he had written me an rx for the 50mg and he did not. So between the two of us – we both forgot stuff. Oh, and to get more exercise and lose weight. Has anybody taken amitryptiline? It is a major appetite enhancer. I am getting on my stationary bike tonight and it is diet sodas for me now.
He commented that he didn’t think my right arm problem had anything to do with my neck muscles. And that the NCV test showed something up with both of my wrists. He also said something to the effect that he didn’t think this was demylenting stuff happening (which is good), but I have something going on.
I just called my old neuro’s office and they are faxing all my old records up to him. I also need to get a copy of the film on an MRI done on my lower back a few years ago. My old neuro said I had degenerative disc disease. My lower back always hurts real bad, but the old neuro said my back was normal for my age (45 at the time).
I go back April 2nd for a complete review of everything. I think I will take a tape recorder and hope he will allow it.
I am still very upset over two of my sisters reaction Sunday. I don’t plan on seeing them very much in the near future. I know this is part of what kept me awake late, late last night. And the time change sure doesn’t help my sleep habits.
Thank you all for listening to me!!!
AnonymousMarch 13, 2007 at 5:23 pm
What great information on the tests! I’ve often wondered what some of them are for, and now I know, thanks to you.
Also, taking a tape recorder is such a great idea. Wish I had thought to do that when I was going to so many doctors. Fortunately, my husbandccame with me, and was good at remembering what was said at most of the doctors visits.
Thanks for your help.
AnonymousMarch 13, 2007 at 5:38 pm
You must have been so disappointed in your sisters’ reactions. It really hurts when someone you think you can count on lets you down. I’m so sorry and wish I could help.
Something you might want to think about before cutting your sisters out of your life too much – everyone has their strengths and weaknesses. I hope your sisters both have other positive qualities to balance out those weaknesses.
Dealing with illness, doctors, hospitals etc. is scary for some people- they may not even know why. I know several people who have had the same reaction from family or friends when they were sick, but also know the family and friends in question, and they actually do care – they just don’t show it in the way that may be needed or wanted at the time.
There are also people who don’t pick up on hints. Could this be the case with your sisters? Perhaps if you asked them directly to do one thing to help you, they might step up.
Could your sisters help you in some other ways? Maybe do grocery shopping, or take care of your house plants or pets now and then – just throwing ideas out there, but you get the idea.
Yes, there are some families who just can’t be counted on for much, but maybe they are capable of learning. Someday they may need help themselves, and that would be a hard lesson.
Wishing you the best,
AnonymousMarch 13, 2007 at 7:00 pm
I feel your warmth and compassion. Years ago (20-25) when I went to a therapist, he felt strongly that my family wasn’t good for me. Then my mother died suddenly 8 years ago and we all got closer. Then my father died last year. My brother (61) is the oldest (with two kids – grown now) and I am the youngest. My 3 sisters are in their 50’s (and I will be this year). All 4 of us girls do not have children. I feel they resent me for being ‘the baby’ of the family, which of course I have no control over. I was always being pampered by my mother especially when I was sick. This is a role I want to get out of and obviously my sisters are still in their old roles. They flat out laughed at me Sunday – it is slowly sinking in how mean they were. It is just time for a change. I rent from one sister and the other is very mental (certifiable). God did bless me with one sister 4 years older that does understand me.
Don’t know if any of this makes any sense or to what purpose I wrote this for, but you all are family that understands me physically.
I do have a touch of a feeling that the neuro doesn’t relate totally to these residuals, but I am willing to keep an open mind and see him April 2.
Okay, I am actually going to get on my exercise bike that is right next to me. I’m going for five minutes today! And I haven’t had a soda today!!!
AnonymousApril 3, 2007 at 12:09 pm
I went yesterday to this new neuro for review of my tests. Fortunately, my niece who has been living in England is home visiting and went with me with paper and pen in hand!!!
Not all the blood work is back yet, but he said lots of stuff looked good except my Vitamin B level was on the low side. My niece and neuro discussed what type of B complex I need so she is going to pick me up some at Atkins today. The neuro talked about something new on the internet that has shown promise with Parkinsons and Downs, but I have to wait to see my niece’s notes for what this is called. He said it was expensive – what else is new. I will share this info. soon! He did say my sed rate was fine as my electrolytes. Good, huh?
At one point he did say I had chronic GBS and put as my diagnose Sensory Polyneuropathy. We discussed getting an MRI of my head and neck, but he said even if he found something he would not operate as I was functioning fairly well. So I said no to the MRI as this is costing me $1,000 of my deductive anyway. I am still having problems with my right arm tingling and my right thumb is numb all the time now. He said I have carpel tunnel in both wrists as the NCV showed this. He told me to get braces for both hands. I guess I will put up with the tingling for a while as I am mentally and monetarilly (?sp) overloaded right now.
I am so grateful my niece was home and able to go with me. The situation with my dysfunctional family is about the same. In fact, my niece told me that is why she will never live here and has chosen England and maybe San Francisco if she does stay in the states. She was very supportive and let me have a good cry after we left the doctor office.
He came down on me hard about smoking, the little beer drinking I do, exercise and weight. Remember I am on amitryptiline and as most other meds, the side effects include weight gain. We discussed other meds such as Lyrica and the old standard Neurontin, but since amitryptline seems to help for nerve pain and it is cheap, I am sticking with it. He had me up my dose a month ago from 25 mg to 50 mg, but he agreed I could go back down to 25mg until I get to hurting too much.
This was all such a big mental stresser yesterday as he offered no compassion in the way he spoke with me. Step one – I am going to keep riding my exercise bike and more dieting. Next paycheck I will buy some nicorette gum to at least cut back a bunch, but I don’t think I can quit this very moment. I intend to do my little beer drinking with my friends as that is very helpful with my attitude in life.
He wants me back in 1 month – I suppose the rest of the bloodwork will be in. I hope to show at least 5-10 lbs dropped and am able to report progress with my exercise bike. I work with several women that are on a variety of diets and I will watch what they eat and how much and do the same for myself.
Oh, last thing, he did write a Rx for physical therapy as I told him I never got any when this first hit 10 years ago because my job at the time wouldn’t let me off work. I don’t know what I’ll do about that as I really can’t take off work much where I am now. It is all just too much to digest right now. I am lucky I have a job that puts up with me taking off a day a month with whatever I tell them is wrong with me.
Sorry this is so long… it feels so good writing here as I know you all understand what is happening. I got affirmation that there is something wrong with me (it’s not in my head) and really didn’t expect any miracle drug. So I suppose I should be content with this doctor’s visit.
Thanks for listening 🙂
AnonymousApril 4, 2007 at 12:33 pm
something new to help Downs? Downs is a genetic disease, no pill will help that. I’m a carrier and my sister died with it and my nephew is a Downs child. That would be a very good trick though. Chrissy I hope the b vitamins will help improve your nerves. eat plenty of fresh fruits and veggies. out of curiosity do you have problems digesting foods?
AnonymousApril 4, 2007 at 4:16 pm
Hmmm… digestion problems. Yes, like crazy. But, drinking Metamucil every day helps so, so much. It is unbelievable what that does for me. I had my gallbladder out 20 years ago, so I do have a history of digestion problems anyway. Curious as to why you ask this.
My niece sent me her notes and the new medicine the neuro was talking about is glyconutrients and the one he likes is Ambotrose by a company called Mannatech. I Googled it yesterday and found some good reading and testaments even on Downs. My niece is going to do her research before she advises me if I should try this stuff. I think starting the vitamins she got me today will be real interesting as to how it helps me.
I’m starting to really crave a soda, but my niece’s notes show that he talked about even diet sodas aren’t good because of the dye in them. She says she occassionally drinks a diet 7-up and that is it. I am lucky for where I work is a fancy country club and I can eat decent food most days. I do get lots of vegetables and fruits here. At home is another story – the neuro could not believe all I eat at home is tv-dinners. Actually last night I had a bowl of Cheerios after I rode my exercise bike.
So much to take in, but I am taking it one day at a time. I am so, so fortunate to have had my niece visiting while I had this doctor’s appointment. Tonight she is going to teach me some stretching.
AnonymousApril 4, 2007 at 8:34 pm
Just my opinion, but this Neuro sounds like a quack. We had a whole thread about that company and glyconutrients, they don’t work for GBS/CIDP, please don’t spend your hard earned money on that crap. It’s a BS web site, when anyone can claim they can cure Downs Syndrome, bells should go off. There is no cure for Downs. They are just selling a product and don’t care who buys it as long as they make $$$$$$$$$$$$$$$$$$$$$$$$$$. I did my own researching about that company.
I think that thread was on the old forums. You can always go to PT at night or Saturdays if you can.
Are you sure your digestive problems are linked to GBS/CIDP? Maybe a trip to a Gastro would help solve that problem.
Yake care girlfriend and big ((((((Hugs)))))) to you.
AnonymousApril 4, 2007 at 8:48 pm
Any Neuro that talks about glyconutrients and mannatech scares me. I don’t personally know if the stuff works, however I have been a victim of their agressive sales techniques, and misc. glycobabble. Read this mlmsurvivor.com/mannatech.htm and if you google mannatech and sift through the crap there is more.
AnonymousApril 5, 2007 at 10:14 am
What a shame this has happened to me. My niece felt the same way about the glyco stuff – she said she is leary of anything only sold on the internet. Darn it… I was truly hoping to find a good doctor. I do go back in one month and that will probably be it for him. The blood work check was the best thing out of this doctor as it is giving me an idea of what my body needs. I can stick with my regular PCP doc for refills of amitryptiline. But maybe I can even get off of that if my new vitamins work well?!?!
My niece has turned out to be such a blessing at this time in my life. She got me some vitamins from Akins – Natures Way, Alive. They have good amounts of Vitamin B12 and other stuff that I think is needed to make it all work. My niece also felt that I was too much for this neuro. I had too many questions that he could not answer.
On the digestion problems, a few years back I had a horrible bout of diaherra (?sp) and my PCP doc put me in the hospital for 3 days for dehydration and infection. Ever since then I have been much better – mainly because of Metamucil. I do take Prilosec every day and only occassionally have acid reflux. I believe all this started when I began neurontin 10 years ago.
I feel pretty good today, even though work is extremely busy, and I will see how these vitamins work for me. Niece is preaching to me to drink lots of water and no sodas. I can do that. She also showed me and another sister (my good sister) a bunch of stretches last night. I sure slept good.
Life is getting better 😀
AnonymousApril 5, 2007 at 12:17 pm
Here are the specs on what I have started taking, per my sweetest niece. What do you all think???
Total Carbohydrate 1 g <1%
Vitamin A (33% (5,000 IU) as retinol palmitate/67% (10,000 IU) as beta carotene 15,000 IU 300%
Vitamin C (ascorbic acid) 1 g 1667%
Vitamin D (as ergocalciferol) 400 IU 100%
Vitamin E (as d-alphatocopheryl succinate) 200 IU 667%
Vitamin K (as phytonadione) 80 mcg 100%
Thiamin (as thiamin mononitrate) 25 mg 1667%
Riboflavin (Vitamin B2) 25 mg 1471%
Niacin (as niacinamide) 125 mg 625%
Vitamin B-6 (as pyridoxine HNCI/pyridoxal 5- phosphate) 50 mcg 2500%
Folic Acid 400 mcg 100%
Vitamin B12 (as cyanocobalamin) 200 mcg 3333%
Biotin (as biotin triturate) 300 mcg 100%
Pantothenic Acid (as d-calcium pantothenate) 125 mg 1250%
Calcium (as cirate/carbonate) 250 mg 25%
Iron (as amino acid chelate) 18 mg 100%
Iodine (from pacific kelp powder) 150 mcg 100%
Magnesium (as cirate/oxide) 125 mg 31%
Zinc (as amino acid chelate) 15 mg 100%
Selenium (as selenium monomethionine) 70 mcg 100%
Copper (as amino acid chelate) 2 mg 100%
Manganese (as amino acid chelate) 4 mg 200%
Chromium (as polynicotinate) 120 mcg 100%
Molybdenum (as molybdenum triturate) 75 mcg 100%
Sodium 15 mg 1%
Potassium (as amino acid chelate) 50 mg 1%
Green Food/Spirulina Blend 500 mg *
Amino Acids 225 mg *
Garden Veggies Blend 100 mg *
Orchard Fruits Blend 100 mg
Myco Defense Mushroom Blend 100 mg
Digestive Enzyme Blend 100 mg
Omega Fatty Acid Blend 100 mg
Citrus Bioflavonoid Complex 60 mg
*Daily value not established.
Other ingredients: Vegetable modified cellulose, Vegetable modified cellulose gum, Vegetable stearic acid, Silica, Vegetable magnesium stearate, Vegetable cellulose, Chlorophyll.
AnonymousApril 5, 2007 at 12:58 pm
My dear Chrissy.
You have been through hell. Instead of wasteing your money on gum to help you stop smoking try CHANTIX. My Dr put me on it and it works, It blocks the part of your brain that craves nictine. My Dr told me to keep smoking and I did and in a week was down to half a pk a day and in 10 day was down to 2 cigarettes a day. You need your Dr to give you a precription for this and it will be about $105.00 for a month. It does work and the only side effect is some withdrawl and a little stomach upset. you are in my prayers and thoughts.
AnonymousApril 5, 2007 at 11:51 pm
chrissy, please take a stool softener while you take all those supplements. increase your fiber intake also, wouldn’t want you to get intestinal upset from all of those. keep track of how you are feeling for the next month-it sounds like an awlful lot of sups and high doses, in my opinion. out of curiosity do you take prilosec within a 2 hour window after you take neurontin, or 1 hour before?
it sounds like your niece is very helpful to you, i’m sure you feel less stressed having her there for you. you are blessed. take care.
AnonymousApril 6, 2007 at 9:59 am
I no longer take neurontin. I take amitrtyptiline at night. In the morning with my glass of Instant Breakfast, I take Prilosec, one of those vitamins I listed above, blood pressure medicine, diuretic, Paxil, and hormones. When I get to work and get some decaf coffee (with splenda) and maybe one piece of toast, I am taking another vitamin. The regular dose of this vitamin is 3 daily. I figured it would be good to start out for a bit with only 2. Oh, and before I leave my house I drink my metamucil. So I do have the fiber added! And my niece is telling me to drink lots of water – which I have been doing. No sodas since Monday. Wow, going on 4 days without a soda!
My niece has been truly a Godsend, but she goes back to England Sunday (she was here for spring break from Manchester). Then she is off to China to get some kind of teaching certificate for 6 weeks. And who knows what she will do after that. She was a flight attendant for 7 years and loves to go all over the world. She’s only 34 so more power to her. If she does move back to the states, she will probably move to San Fran. She loves the energy of a big city.
Thanks for checking on me Cheryl. And Steve, you are so sweet and that feels so good 🙂 Thank You!!!
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