1st Neurologist visit this Friday - Neuro vs pharmo
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1st Neurologist visit this Friday - Neuro vs pharmo
Over the past few years I've had a number of intermittent, recurring symptoms. I've seen the Dr for several of them individually, but only recently began to suspect MS or some other Neurological problem.
Earlist symptoms I can remember are extreme uni-lateral light sensitivity (can't drive with both eyes open), general lose of coordination, pain in random areas on right side of body, bowel issues, and difficulty swallowing. Since then I've developed tinnitus, eye twitching (days/weeks at a time), numb digits.
A week ago, I began having tremors in my arm, tightness/tingling in my face, and I randomly threw up one day, and in the last three days my chest has been tight and 'fluttery' for lack of a better word.
I saw my Dr and he gave me a referral for a Neurologist. He'd mentioned at the time that he was concerned that the symptoms were actually from my existing medications. The chest tightness. The chest tightness started a couple days after the arm tremors and the day after my Dr visit, so I called an informed him. his response now is that I should see my psychiatrist to evaluate my meds.
I've been on 300mg of Wellbutrin XL for 4-5 years now. I started taking Adderall a little over 12 months ago once I saw my Psychiatrist for the 1st time. (my PC prescribed te Wellbutrin). I cannot find a single post or article discussing confirmed long-term or late-onset side effects from Wellbutrin. It seems to lose effectiveness for some people after time, but I can't find anything about developing any of the normal side effects after years of use. Adderall is much more forgiving and I just stopped taking it for a few days when this started and nothing changed.
I have a Neurologist appt this Friday and I'm looking for feedback on if people think I should try and get of the Wellbutrin before seeing a Neurologist, or just go anyway? Is the Neurologist going to send me packing, saying the same thing?
I'm super anxious (I'm not normally) about this whole situation and seeing a Neurologist, so I don't entirely trust my own perspective in this case. Stopping Buropion/Wellbutrin can take a long time because of withdrawals, so it would significant delay seeing a Neurologist, which also makes me nervous.
Any advice is appreciated. Thanks!
Earlist symptoms I can remember are extreme uni-lateral light sensitivity (can't drive with both eyes open), general lose of coordination, pain in random areas on right side of body, bowel issues, and difficulty swallowing. Since then I've developed tinnitus, eye twitching (days/weeks at a time), numb digits.
A week ago, I began having tremors in my arm, tightness/tingling in my face, and I randomly threw up one day, and in the last three days my chest has been tight and 'fluttery' for lack of a better word.
I saw my Dr and he gave me a referral for a Neurologist. He'd mentioned at the time that he was concerned that the symptoms were actually from my existing medications. The chest tightness. The chest tightness started a couple days after the arm tremors and the day after my Dr visit, so I called an informed him. his response now is that I should see my psychiatrist to evaluate my meds.
I've been on 300mg of Wellbutrin XL for 4-5 years now. I started taking Adderall a little over 12 months ago once I saw my Psychiatrist for the 1st time. (my PC prescribed te Wellbutrin). I cannot find a single post or article discussing confirmed long-term or late-onset side effects from Wellbutrin. It seems to lose effectiveness for some people after time, but I can't find anything about developing any of the normal side effects after years of use. Adderall is much more forgiving and I just stopped taking it for a few days when this started and nothing changed.
I have a Neurologist appt this Friday and I'm looking for feedback on if people think I should try and get of the Wellbutrin before seeing a Neurologist, or just go anyway? Is the Neurologist going to send me packing, saying the same thing?
I'm super anxious (I'm not normally) about this whole situation and seeing a Neurologist, so I don't entirely trust my own perspective in this case. Stopping Buropion/Wellbutrin can take a long time because of withdrawals, so it would significant delay seeing a Neurologist, which also makes me nervous.
Any advice is appreciated. Thanks!
- lyndacarol
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Re: 1st Neurologist visit this Friday - Neuro vs pharmo
Welcome to ThisIsMS, juicebox4242.juicebox4242 wrote:Over the past few years I've had a number of intermittent, recurring symptoms. I've seen the Dr for several of them individually, but only recently began to suspect MS or some other Neurological problem.
Earlist symptoms I can remember are extreme uni-lateral light sensitivity (can't drive with both eyes open), general lose of coordination, pain in random areas on right side of body, bowel issues, and difficulty swallowing. Since then I've developed tinnitus, eye twitching (days/weeks at a time), numb digits.
A week ago, I began having tremors in my arm, tightness/tingling in my face, and I randomly threw up one day, and in the last three days my chest has been tight and 'fluttery' for lack of a better word.
I saw my Dr and he gave me a referral for a Neurologist. He'd mentioned at the time that he was concerned that the symptoms were actually from my existing medications. The chest tightness. The chest tightness started a couple days after the arm tremors and the day after my Dr visit, so I called an informed him. his response now is that I should see my psychiatrist to evaluate my meds.
I've been on 300mg of Wellbutrin XL for 4-5 years now. I started taking Adderall a little over 12 months ago once I saw my Psychiatrist for the 1st time. (my PC prescribed te Wellbutrin). I cannot find a single post or article discussing confirmed long-term or late-onset side effects from Wellbutrin. It seems to lose effectiveness for some people after time, but I can't find anything about developing any of the normal side effects after years of use. Adderall is much more forgiving and I just stopped taking it for a few days when this started and nothing changed.
I have a Neurologist appt this Friday and I'm looking for feedback on if people think I should try and get of the Wellbutrin before seeing a Neurologist, or just go anyway? Is the Neurologist going to send me packing, saying the same thing?
I'm super anxious (I'm not normally) about this whole situation and seeing a Neurologist, so I don't entirely trust my own perspective in this case. Stopping Buropion/Wellbutrin can take a long time because of withdrawals, so it would significant delay seeing a Neurologist, which also makes me nervous.
Any advice is appreciated. Thanks!
My suggestions are #1 compose a written list of all your symptoms, #2 compose a written list of all your medications, #3 discuss your lists with the neurologist on Friday, #4 ask the neurologist to order a vitamin D blood test (the 25-hydroxy D test), if your PCP has not already done so. (By the way, request your own copy of any test results – it is important to have the actual numbers.)
Your symptoms are common to many conditions. In my opinion, it is logical to begin testing and excluding the most common conditions first – the easiest and least expensive tests. Over 1/2 of the world's population is deficient in vitamin D.
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Re: 1st Neurologist visit this Friday - Neuro vs pharmo
Thanks! I had a recent blood test and my levels were normal or good for everything. I can't remember if that normal panel has B12 in it, but I take supplements most days and am a pretty healthy eater.
So I'll just bring my list on Friday and go through it with her.
Side question that I was meaning to post, but maybe can ask her. During an attack, do the symptoms come and go or vary in severity? Or do they usually come on consistent for the attack and fade out slowly? I'm guessing the answer is 'depends on the person', but want to make sure (vary in intensity and some go away for hours at a time.
Thanks!!
So I'll just bring my list on Friday and go through it with her.
Side question that I was meaning to post, but maybe can ask her. During an attack, do the symptoms come and go or vary in severity? Or do they usually come on consistent for the attack and fade out slowly? I'm guessing the answer is 'depends on the person', but want to make sure (vary in intensity and some go away for hours at a time.
Thanks!!
- lyndacarol
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Re: 1st Neurologist visit this Friday - Neuro vs pharmo
Routine blood panels do not usually have a vitamin D test or vitamin B 12 testing included – these tests must be requested specifically. (In fact, the vitamin D test is the most frequently requested test.)juicebox4242 wrote:Thanks! I had a recent blood test and my levels were normal or good for everything. I can't remember if that normal panel has B12 in it, but I take supplements most days and am a pretty healthy eater.
So I'll just bring my list on Friday and go through it with her.
Side question that I was meaning to post, but maybe can ask her. During an attack, do the symptoms come and go or vary in severity? Or do they usually come on consistent for the attack and fade out slowly? I'm guessing the answer is 'depends on the person', but want to make sure (vary in intensity and some go away for hours at a time.
Thanks!!
The standard ranges established by labs in the US are generally considered to be set too low. Do not settle for being told that your levels are "normal" or "good" – you need to have the actual numbers.
If your GP does order B12 testing, taking a B12 supplement before testing will skew the test results. If your supplements include B Complex, the folic acid in the B Complex can actually mask a B12 deficiency. A washout period before B12 testing is recommended.
You are very smart in the answer to your own question! Every case is unique; it "depends on the person." Symptoms vary intensity and duration.
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Re: 1st Neurologist visit this Friday - Neuro vs pharmo
So I saw the Neuro today and she ordered 11 blood tests (CBC+Differential, Ceruloplasmin, Metabolic panel, Creatine Kinase +MB, D Dimer, Protein Electrophoresiss serum, thyroid Antibodies, Thyroid Stim Hormone, Troponin Ultra Sensitive, and Vitamin B12) and a brain MRI. So, once I get the MRI I think I'll have some answers. I'll update again when I have results.
Thx!
Thx!
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Re: 1st Neurologist visit this Friday - Neuro vs pharmo
I have no medical background and am not acquainted with all blood tests, but your neurologist seems to be willing to work with you and has made a good start with tests.juicebox4242 wrote:So I saw the Neuro today and she ordered 11 blood tests (CBC+Differential, Ceruloplasmin, Metabolic panel, Creatine Kinase +MB, D Dimer, Protein Electrophoresiss serum, thyroid Antibodies, Thyroid Stim Hormone, Troponin Ultra Sensitive, and Vitamin B12) and a brain MRI. So, once I get the MRI I think I'll have some answers. I'll update again when I have results.
I am familiar with the vitamin D test called "25-hydroxy vitamin D." I am not familiar with a test called "D Dimer" – but I ask the very knowledgeable people here at TIMS to educate us. There is lots of general information on vitamin D at http://www.GrassrootsHealth.net (currently their recommendation is for the 25-hydroxy D result to be between 40-60 ng/mL – many experts recommend 80-100 for people with neurological symptoms). I will be especially interested in your result. The results on my 25-hydroxy D test done 4 months ago, January 2016, was 24 ng/mL.
The testing for thyroid antibodies and thyroid stimulating hormone (TSH) seems reasonable because thyroid problems are common, can cause symptoms such as yours, (and are even common with vitamin D deficiency).
The vitamin B12 test measures the total B12 in your blood (a.k.a. serum). The results can be misleading for several reasons, but especially if the patient has taken vitamin B12 supplements before testing – this can skew the test results.
And the standard range for B12, which US labs have established, is generally considered to be set too low – in the US a serum B12 level below 200 pg/mL is considered a deficiency; in Japan, any result below 500 is considered a deficiency and is treated as such.
There are experts in the US who consider this area (between 200 and 500) to be a "gray zone" which should be treated – depending on your test results, this may be something to discuss with your neurologist or GP or even with another specialist (a hematologist, who specializes in blood problems).
We look forward to the update on your test results, if you are willing to share the info with us.
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Re: 1st Neurologist visit this Friday - Neuro vs pharmo
So, all my test results came back normal. They didn't' do a Vit-D test this round because they realized that I'd had one a couple months ago from my PCP. I live in Wisconsin as well and it is pretty standard practice to obliterate your daily D intake during winter around here. So, now I'm just waiting on my insurance company to approve the brain MRI.
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Re: 1st Neurologist visit this Friday - Neuro vs pharmo
Howdy, neighbor! I live in Illinois.juicebox4242 wrote:So, all my test results came back normal. They didn't' do a Vit-D test this round because they realized that I'd had one a couple months ago from my PCP. I live in Wisconsin as well and it is pretty standard practice to obliterate your daily D intake during winter around here. So, now I'm just waiting on my insurance company to approve the brain MRI.
Since you had a 25-hydroxy D blood test "a couple months ago from the PCP," could you call the doctor's office and request a copy of your actual number results be sent to you?
If these test results are not available to you or you will have a lengthy wait until you can be tested again, please consider ordering a 1-time vitamin D test from GrassrootsHealth (https://www.grassrootshealth.net/proj-welcome/?pr=95284)
The cost of the 1-time test is $65 (+ $5 shipping).
When the test kit arrives, you simply prick a finger (as diabetics do), put 3 drops of blood on the blotter card, let it dry, mail the card back – you receive test results within a week. I used the GrassrootsHealth test in January and learned that my level was only 24 ng/mL.
It is a good idea to have vitamin D levels checked twice a year – peak and trough. The peak or highest level of serum vitamin D is the end of summer; the trough (for you in Wisconsin) would be about now – the end of winter.
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