New symptom out of the blue

[LisaH]

I had persistent head and eye pain for most of yesterday and was still in pain when I went to bed. I woke up stiff with my arms feeling "heavy" but my head and eye pain are milder this morning. I was having my usual cup of coffee on the porch when my hand suddenly "let go" of the cup for no reason and it spilled everywhere. Hopefully the rest of the day will be better.

[lyndacarol]

Thanks for the info, lyndacarol. It hadn't occurred to me that they might not accept test results from somewhere else. My neurosurgeon is in Winston-Salem and they'd be likely to consider "outside results" less reliable. My local doctor's office still hasn't sent the order to the hospital. As of my last conversation with them, they seem quite adamant that I need a complete physical before getting my blood work ordered. I became quite upset and said, "So I can't have my B12 and vitamin D checked unless I get in stirrups?!" and the woman insisted that she didn't mean it that way. I'm having no symptoms that would require that type of exam. At this point... I'm thinking it might be best to contact my neurologist regarding the blood work. If she thinks it would be beneficial to check my B12 and vitamin D, she could have it done when I go for my next appointment. Hopefully she won't insist that I have a complete physical first.

I am of the opinion that the vitamin D blood test should be performed routinely at least once a year (twice a year is better) for everyone just to know the vitamin D status, regardless of health conditions – estimates are that over 1/2 of the American population is deficient in vitamin D. The test is a simple blood test; it is not expensive – if your doctor is opposed to simply ordering the test, I would begin to consider alternative methods that do not require a doctor's order, such as:

RequestATest, "National Leader in Affordable Direct to Consumer Lab Testing"
Vitamin D, 25-Hydroxy Blood Test: $59
http://requestatest.com/vitamin-d-25-hydroxy-testing


It is possible to order a 1-time vitamin D test kit from GrassrootsHealth for a $65 fee (+ $5 shipping). This at-home test requires pricking a finger, placing a few drops of blood on the blood spot card, and mailing it in (you get results within a week). I used the test from GrassrootsHealth (http://www.GrassrootsHealth.net) last year. My first test result was 24 ng/mL, frankly deficient.
https://www.grassrootshealth.net/proj-welcome/?pr=95284

How to Complete Your Home Vitamin D Blood Spot Test (5 min.)
VitaminDaction Project by GrassrootsHealth



A similar in-home vitamin D test kit is offered by the Vitamin D Council for $50:
https://www.vitamindcouncil.org/testkit/

[NHE]

I just thought of another question that someone might be able to answer for me. I'm currently taking 1800 mg of gabapentin daily for my neuralgias. Would this affect the results of the blood work in any way?

I don't know about gabapentin, but biotin can interfere with many blood tests.

http://medday-lab.com/index.html

This is of concern for people taking high-dose biotin (300 mg/day) according to the Cerenday protocol. However, some lab test results can be skewed at much lower levels. For example, taking just 5 or more mg/day can interfere with B12 and folate testing.

http://www.thisisms.com/forum/biotin-qi ... 26857.html

[NHE]

I hope they decide to just check for everything and get it done. I'm wondering if they'll recheck the cortisol, prolactin, etc. again to see if those have changed. I'm nervous about the follow-up MRI because the cyst might have grown. It's deforming my optic chiasm and encasing arteries, etc... so removing it would be extremely dangerous. The neurosurgeon and neurologist don't seem to think it's the reason for my head pain (neuralgias) or vision changes. However, I've read that very large cysts often cause headaches and vision problems, so hopefully the doctors are right.

I'm not a neurologist, or a doctor for that matter, but I would be surprised if a cyst the size of yours is not causing some type of symptom. If it were me, I would refuse any diagnosis until the cyst was dealt with or definitively ruled out.

[LisaH]

Thanks for the replies. I've decided to wait and let the neurologist or neurosurgeon order those tests if they think it's needed. My next appointment coming up is with the neuro-ophthalmologist and I'm curious to see what he'll do compared to a "regular" ophthalmologist. As for the cyst, I agree that it should be ruled out as the cause of my symptoms or addressed in some way. The chiari malformation is also being called an "incidental finding" but I think the doctors may have dismissed it too quickly as well. My MRI report refers to it as a "tight appearing chiari one malformation" which I couldn't find anything online about. I also feel that a spine MRI would be a good idea to rule out a possible syrinx. Not everyone with chiari gets a syrinx, but it is a possibility. My aunt has both chiari and a syrinx. I read this on one site: "Some affected individuals may develop muscle contractions such as small, involuntary muscle contractions or “twitches” (fasciculations)." One of my diagnoses at the neurologist is fasciculations and those have been getting more and more pronounced. I also read this: "Many individuals suffer from chronic pain and some will develop neuropathic pain syndromes." I've been diagnosed with those as well. I'm wondering what it would take to convince them to also do a spine MRI when I go for my brain MRI in July.

Links for the quotes:
https://rarediseases.org/rare-diseases/syringomyelia/
http://asap.org/index.php/disorders/syringomyelia/

[LisaH]

Well... I contacted my neurologist's office today to ask if they'd consider ordering a spine MRI for the same day that I'm having my brain MRI. I explained to her that a syrinx is a possibility because of my chiari malformation and that it might explain some of my symptoms. When the assistant called me back, she said the PA said "The brain MRI will show if there's a chiari malformation". I was almost too stunned to respond! I said "I do have a chiari malformation. That's already been diagnosed." They've even looked at the MRI showing it with me there with them. She then told me that the PA doesn't feel that a syrinx would cause my symptoms. I told the assistant that my fasciculations (muscle twitches) have gotten progressively worse since I was there. I'm having them in my legs (front and back), my arms, sides, back, and even in my face sometimes. It isn't happening when I'm stressed or upset, either, which I might consider dismissing as anxiety-related. The twitching happens regardless of my mood or what I'm doing and something has to be causing it. I'm very discouraged right now because I feel that my symptoms aren't being taken seriously. My neurologist's office couldn't even keep my diagnoses straight when getting back to me. Has anyone here had similar experiences with doctors and if so, how did you deal with it?

[NHE]

Has anyone here had similar experiences with doctors and if so, how did you deal with it?

Doctors can be full of themselves sometimes. For example, 4 days after completing a 10 day course of the antibiotic bactrin I developed a kidney stone. I looked up the prescribing information for bactrin and risk of kidney stones is listed approximately 6 times if I remember correctly. The next time I was at my doctor's office I mentioned this to them. The nurse said quite matter-of-factly "oh, bactrin doesn't cause kidney stones." I said, "Sure it does. It's in the prescribing information." End of discussion with a funny look from the nurse. The next time I was at the doctor's office I brought the printed prescribing information with me with each instance of the increased risk for kidney stones highlighted in bright yellow. They refused to look at it. I now have it in my medical history that I'm allergic to the sulfonamide class of antibiotics so I don't have to go through that every time.

Here's another example. I saw a neurologist about 2 years ago. He ordered an MRI. At my follow-up appointment I discovered that he hadn't even looked at the MRI and had only read the radiologist's report. I'm convinced that had he looked at the images, he would have immediately recognized the similarity of my cervical spinal cord lesion to subacute combined degeneration which is caused be B12 deficiency. He also hadn't read my medical history which I had written up for him on his own new patient information form that his office had given me. As a result, he spent considerable time discovering every neurological quirk that I have and trying to attribute it to MS. I repeatedly had to correct him and describe the prior incidents that had led to those residual symptoms. He also blatantly refused to believe that gadolinium dechelates and remains in the body even after I told him of a toxic metals urinalysis I had done with the chelation agent DMSA which clearly detected the presence of gadolinium even though it had been 10 years since my previous MRI. On my next visit with him, I brought in some journal papers discussing the problem with gadolinium. At least he took them from me and appeared interested.

[LisaH]

NHE,

It's nice to know I'm not the only one, but it's unfortunate that you were treated that way. I had a similar experience regarding medication, actually. I was having what felt like tiny bee stings all over the top part of my head, which I attributed to the neuralgias I had been diagnosed with. I was on a low dose of gabapentin then but the neurologist's PA decided that I was "sensitive" to it. She decided to start me on oxcarbazepine (Trileptal) and wean me off the gabapentin. After two days, I had a persistent hacking cough. I looked it up and discovered that it's a side effect of oxcarbazepine and contacted the doctor. He initially said he'd never heard of coughing as a side effect of oxcarbazepine. I told him what I had read and he had me hold on for a minute. When he came back, he told me to stop taking it immediately and to just continue as I had been with the gabapentin. Next, the PA suggested that I might have paroxysmal hemicrania and wanted to start me on Indocin (indomethacin). The side effects of it can be horrific so I refused that medication flat out. She then decided to double my gabapentin dosage because my symptoms had worsened considerably. Apparently I'm not "sensitive" to it. As for the paroxysmal hemicrania, it seems very unlikely considering that the pain is one-sided and mine is bilateral. I also don't have congestion, tearing, or other common features of it. So... this along with what occurred yesterday (forgetting that I had already been diagnosed with chiari malformation) makes me wonder if these are the people who should be treating me. I'm not sure how I'd go about getting another neurologist at this point, though.

[LisaH]

Is anyone else here taking gabapentin? I'm beginning to wonder if one of my symptoms might be a side effect of it. I've been having the painless twitches/spasms for awhile but they seem to be getting more intense. Two times - several weeks apart - my upper arms/shoulders suddenly jerked toward my body. It was like a shrug but going in toward my body instead of up. It happened in my left arm, then my right, then both of them together once. I'm very frustrated because I know that if I call my neurologist, she'll most likely want to wean me off of gabapentin and start something else. I've tried several meds already for the neuralgia and gabapentin has been the only real solution. She seemed eager to put me on Indocin despite the horrible side effects, so I'm hesitant to call. Then again, if the jerking/twitches are related to something else, the neurologist should probably be told about it..... right?

[jimmylegs]

not to date. have your docs provided you with this list of nutrients depleted by - and which require replenishment during use of - gabapentin? these nutrients are individually and collectively of particular concern for ms patients. http://www.uofmhealth.org/health-library/hn-1390003
in the past i've had a certain kind of painless twitch which resolves with efforts to improve zinc status (which i notice is on the list of things depleted by gpn so maybe your suspicions about a side effect are accurate).

[LisaH]

My neurologist has finally ordered blood work and I'm going by the hospital today. She's checking the following:

Thyroid (I had this checked in mid-January and it was normal so I'm not sure why they'd check it again now)
Electrolytes
B12
D
CBC
ANA
Methylmalonic Acid
Sedimentation Rate (Sed Rate)

It looks as if they're checking quite a bit to either diagnose me or rule things out.

[jimmylegs]

i'll take that as a 'no they haven't'

[LisaH]

No, jimmylegs, that was never mentioned to me. Thank you for sharing the information. The neurologist only mentioned that electrolytes might be causing the twitches/spasms. I suggested also having my B12 and D checked. The next thing I know, there's an order with a lot more than I was expecting. I asked for a copy of the order while I was at the hospital lab today and to elaborate on my other post: CBC is actually CBC With Differential/Platelet and Sedimentation Rate is Sedimentation Rate-Westergren. They're checking my T4 and TSH just like they did in January when I saw the neurosurgeon. I'm still confused as to why they'd want to check my thyroid again only a few months later. Has anyone reading this had this type of blood work done to possibly "rule out" conditions that mimic MS? Thanks in advance for any replies.

[NHE]

I suggested also having my B12 and D checked.

Be careful on the interpretation of the B12 test results. You'll want B12 to be between 500-1000 pg/mL. However, the standard range that many laboratories use goes down to about 200 pg/mL (and sometimes even lower) which actually represents a deficiency at the lower end. I was B12 deficient and I tested at 247 pg/mL (I was also deficient in folate at the time). When I miss a dose of B12 or take something that interferes with it, I can really feel the difference.

[LisaH]

Thanks for the info, NHE. The results of my blood tests will have to go to the neurologist first and then I should be able to go get a copy of them from the hospital. I want to know my exact numbers so I can research what they mean for myself and I also think it's important to have documentation of everything. I'm anxious to know the results because it's quite possible that there's something wrong with me besides MS. If so, the doctors can treat me for whatever it turns out to be. If the results are normal, that should rule out several things and maybe the neurologist will order a spine MRI or other testing. If I do have MS, I'd like to know sooner rather than later. From what I've read, it can take years to finally be diagnosed.