Welcome to ThisIsMS, sherberry223. You seek "any feedback"… Here is mine:sherberry223 wrote:I'm not new to auto immune diseases. I've had rheumatoid arthritis for 36 years. I've had most of my joints replaced and in the last five years I've had C1-T2 fused completely with 14 inch rods on each side of my spine from the base of my skull into my ribs. This past March I had lower lumbar fusion with 6 inch rods on the sides of my spine. 1998 was my first cervical fusion and up until 2013 I had about three cervical fusions. May 2013 I was rear-ended which resulted in spinal cord Impingement at C3 and C6 for the second time in my life. But this resulted in the drastic surgery of taking out all the old hardware and doing the complete fusion that I mentioned above including the 14 inch rods. always been considered clumsy and have had several falls over the last decade or so. Since 2013 I've had a lot of Falls which resulted in a broken tailbone, broken vertebrae, and other injuries. But since my lumbar surgery in March I've had some really bizarre symptoms such as bad pain behind my eye, double vision, Extreme fatigue, muscle aches, muscle weakness , Extreme mood swings, itchy palms, tingling in my hands and feet, profuse sweating, heat intolerance, feet being cold to the point of putting on fuzzy socks, ringing in my ears, difficulty swallowing ( aspirated while in the hospital and develop pneumonia) , palpitations. I actually had an appointment with the cardiologist and my blood pressure which is normally low was 145/90. But why I came to this forum was the cardiologist said to me before we got started on our consultation that he was looking over my chart and I had had a hip revision and had three or four falls during that recovery but I don't know what else prompted him to ask me this, but he asked me if I have been checked for MS. I thought that was odd for a cardiologist. he then said well your primary care doctor is running tests so let's talk about your cardiac situation. What? I am scheduled for an echo and a tilt table to see if POTS is a possibility. But I happen to come home and look online and there was one message board I saw where some people said that they had been diagnosed with MS after having back surgery !!! I think it was just a general yahoo message board so I thought I would come on here because this seems to be where the information is accurate and ask if anybody that has had any sort of spinal surgery with metal or titanium rods has been diagnosed afterwords with MS. Should I pursue a referral to a neurologist? Should I mention this to my neurosurgeon? Sorry to be so lengthy but I have just been miserable and it seemed to really exacerbate after my lumbar fusion in March. I am very in tune to my body and my RA and I know it's not that. And I have never felt this in my life!! It's been the most debilitating thing I've ever experienced. I appreciate any feedback anyone could offer. Thank you.
Unfortunately, the symptoms you describe as happening since March are common to many conditions. In my opinion (I have no medical background), it makes sense to start with your GP and basic testing for the most likely causes for your symptoms (there may even be more than one cause for your symptoms).
Have you had a vitamin D blood test (the "25-hydroxy D" test)? More than 1/2 the world's population is deficient in vitamin D; and vitamin D deficiency can result in neurological symptoms. The test is inexpensive (about $50-$70, and usually covered by insurance), easy (a blood test) and may give the information to rule out a vitamin D deficiency. (By the way, Vit D deficiency has been linked to many autoimmune diseases, including RA, hypertension, cardiovascular system,… even falling and loss of balance.)
Have you had testing for a possible vitamin B12 deficiency? This deficiency can also cause neurological symptoms, such as you describe. The 4 blood tests included in this listing are #1 a serum B12 test, #2 RBC folate test, #3 a serum homocysteine test, and #4 a methylmalonic acid test.
By the way, the nitrous oxide used in anesthesia (in your back surgeries, especially the one in March) inactivates vitamin B12 in the body and this could be reason for deficiency. If this was not checked after your surgery, it would be a good idea to ask for testing now. Also, request your own copy of test results for any test that is done – it is important to have the actual numbers.
MS is a diagnosis of exclusion, made after the nutrient tests and other tests (thyroid, kidney, liver, celiac disease, and lots more) have ruled out other possibilities. There is no definitive test for MS. Discuss your symptoms and the game plan for testing with your GP; if the two of you decide on the need for a neurologist, perhaps your neurosurgeon or another doctor can recommend someone who specializes in MS.
Welcome to ThisIsMS. I agree with Lyndacarol. You have the potential for so many complications from all of your procedures that seeing an MS specialist at this time would likely not be of benefit. My immediate thought was that it might be possible for your spinal fusion rods to potentially be interfering with your blood circulation especially since they start at C1. I'm not a doctor, however this might be something you might wish to discuss with your doctors.
I have a special interest in vitamin D. Your doctor tested and found a deficiency a few months ago… Do you know or can you get a copy of your test results from her office in order to have the actual numbers? The situation you describe (low Vit D and high parathyroid hormone) is classic for a D deficiency.sherberry223 wrote: I do know that I did have a vitamin D deficiency. My PCP called a few months ago and my parathyroid was high and vitamin D low. She put me on a Rx of 50,000 units of vitamin D daily for 10 weeks. Then retested and vitamin D was normal but parathyroid was still high . I do have an appointment in a few weeks with endocrinologist because she also said my cortisol is off. That can happen when you are on steroids for long term. That goes to your answer Scott. I'm on prednisone (8 mgs only but have been on it for 36 years !!! ) Enbrel, Celebrex, Arava, Synthroid, Estrace, Topamax, Protonix, Cymbalta, Buspar, Nadalol, fentanyl patch, phenergan prn. A lot of meds as you can see. I don't know who mentioned about the vitamin B 12 deficiency but that was something that really caught my attention when reading about MS and ruling out other issues. I'm actually going to email my PCP and ask her to run those specific tests. I'm also going to call my neurosurgeon tomorrow because I have a follow up appointment with him in a few weeks and mention not necessarily MS but the possibility of metal or titanium toxicity. All I know is that I am miserable and have no quality-of-life. Two weeks ago I Felt so horrible that I had to sit on my hands to not check out. I was so depressed and felt I hope the list that I thought I can't do this one more day. And I'm not A weakling. I've been through hell and high water with my RA. But I feel like somebody is tap dancing on my central nervous system. And it makes me just want to crawl out of my skin. The intolerance to heat and the ups and downs with having my feet be cold yet I'm sweating in my head where it feels like somebody is literally setting my head on fire just makes me feel like I'm going crazy!!! I just feel like I can't live like this. The little bit of exertion feels as if I'm climbing the highest mountain. And I just can't understand it. And I feel like the doctors look at my situation and feel like it's so complicated because of my history with RA that they don't want to investigate it. So I have to be my own advocate. But when you have this horrible fatigue and all these other symptoms all I want to do is stay in bed. Oh and just clarification the medications that I'm on I've been on for a very long time so nothing has changed with meds. The sweating and temperature intolerance all of that started after this last surgery which was the lumbar surgery. … I am definitely going to ask my doctor to check my B12 . I will keep you posted. And I will keep you all in my prayers !!!
I assume your vitamin D level was extremely low since she prescribed 50,000 IU of vitamin D daily for 10 weeks. (I assume she has you on a maintenance dose; how many IU's per day? I also assume she continues to monitor your level twice a year?)
At her retest, "vitamin D was normal" – it is not clear to me exactly what that means. Some labs use a cutoff of 30 ng/mL, which is still frankly deficient according to the California-based GrassrootsHealth (http://www.GrassrootsHealth.net) – they recommend that vitamin D should be NO lower than 40 ng/mL. There are neurologists who recommend a level of 80-100 ng/mL for patients with neurological symptoms.
Your list of medications is impressive! Please be aware that some medications can interfere with vitamin D. (I am not sure of all your medications in this regard, but I do know that corticosteroids DO interfere.) Certain drugs also interfere with the absorption of vitamin B12.
By the way, depression (and also, crushing fatigue) is a VERY common symptom in both vitamin D deficiency and vitamin B12 deficiency. Hypothyroidism (low thyroid function) is very often an early symptom of vitamin D deficiency.
Although the following is a commercial video, it is worthwhile watching; it is designed to sell a product, but the general information about symptoms is accurate:
Vitamin D Deficiency Symptoms – 12 Signs of Vitamin D Deficiency You May Miss (3 min. video)
1. Chronic Pain
2. Muscle Weakness
3. Skin Itchiness
4. Constant Overtiredness
6. Sweaty Head
7. Flu/Respiratory Infections
8. High Blood Pressure or Heart Disease
9. Chronic Kidney Disease
10. Constant Infections
11. Asthma Attack
12. Chronic Gum Disease (Swollen, Bleeding Gums)
The following articles should be of interest to you:sherberry223 wrote:I'm not new to auto immune diseases. I've had rheumatoid arthritis for 36 years. I've had most of my joints replaced
Vitamin D and rheumatoid arthritis (2015)
Ifigenia Kostogiou-Athanessiou et al.
"Conclusion: It appears that vitamin D deficiency is highly prevalent in patients with RA, and that vitamin D deficiency may be linked to disease severity in RA. As vitamin D deficiency has been linked to diffuse musculoskeletal pain, these results have therapeutic implications. Vitamin D supplementation may be needed both for the prevention of osteoporosis as well as for pain relief in patients with RA."
Vitamin D deficiency symptoms explained: the top 9 warning signs, June 11, 2014
http://www.naturalnews.com/045528_vitam ... ition.html
"Some people who have a vitamin D deficiency have no immediate symptoms. Those who do have symptoms may experience restless sleep, muscle cramps, general fatigue, joint pain, muscle pain or weakness, inability to concentrate, headaches, constipation or diarrhea, and bladder problems. Here are nine other serious medical conditions that have been linked to a vitamin D deficiency"
Asthma - Vitamin D supplementation of 1,200 IU daily has been shown to lessen asthma attacks and reduce their severity.
Depression - Vitamin D deficiencies have been linked to depression and other psychiatric illnesses. Even a woman getting enough D during pregnancy has been shown to lessen the chances that her unborn child will develop mental illness later in life.
Heart disease - An article published in Molecular Nutrition & Food Research (2) reports that cardiovascular disease is much more common in people deficient in vitamin D. Some children, according to the article, with severe heart failure have also responded well to vitamin D treatment.
High blood pressure - High blood pressure has been associated with deficiencies in calcium, magnesium, potassium and vitamin D.
Rheumatoid Arthritis - RA is a devastating disease that causes systemic inflammation, severe pain and joint damage. Studies have shown that vitamin D can ease the pain and stiffness associated with RA.
Multiple sclerosis - Studies have shown that geography matters when it comes to the odds of getting MS. The farther from the equator you live -- and the less sun exposure you get -- the more likely you are to develop the disease. This suggests a strong link between MS and vitamin D.
Cancer - Several different kinds of cancer have been linked to D deficiencies, including breast cancer, prostate cancer and colon cancer. The causal link is so strong, in fact, that the Mayo Clinic (3) lists separate recommended dosing levels of the vitamin for both cancer prevention and prostate cancer treatment.
Periodontal disease - This inflammation of the gums can cause pain, bleeding and tooth loss. Vitamin D helps in the formation of defensins and cathelicidins which, in turn, can lower the number of harmful bacteria in the mouth.
Diabetes - An article from World's Healthiest Foods (4) lists poor blood-sugar control as a symptom of vitamin D deficiency. This, in turn, can increase the risk of developing diabetes.
Here is another source mentioning "head sweating"as a sign/symptom of vitamin D deficiency:sherberry223 wrote: I do know that I did have a vitamin D deficiency.… The intolerance to heat and the ups and downs with having my feet be cold yet I'm sweating in my head where it feels like somebody is literally setting my head on fire just makes me feel like I'm going crazy!!!
7 Signs You May Have a Vitamin D Deficiency
http://articles.mercola.com/sites/artic ... ptoms.aspx
1. You have dark skin
2. You feel "blue"
3. You're 50 or older
4. You're overweight or obese (or have a higher muscle mass)
5. Your bones ache
6. Head sweating
7. You have gut trouble
Vitamin D deficiency does not directly cause symptoms, but because every system in the body requires this hormone (vitamin D is actually a hormone – a secosteroid), a deficiency allows any body system – nervous system, cardiovascular system, endocrine system, digestive system, musculoskeletal system, or ANY other system (usually the weakest system in the body) to malfunction and eventually become damaged. It is my suspicion that you have had a serious, long-term vitamin D deficiency that has led to a damaged system and your problems. Correcting a deficiency in the blood will not immediately repair the system affected. (In the endocrine system, the thyroid gland is often one of the first affected – the thyroid, as you probably know, is a big player in the regulation of body temperature.)
You may be interested in reading through the Coimbra High-Dose Vitamin D Protocol forum here at ThisIsMS (http://www.thisisms.com/forum/coimbra-h ... tocol-f57/).
Yes, from my reading I would say that your number (30 ng/mL) is still a low number. I realize that most labs have adopted the reference range of 30-100 (which came from the Institute of Medicine, a.k.a. IOM, I believe), but most vitamin D experts think the bottom cutoff number (30) is outdated and is set too low.sherberry223 wrote:I just checked my medical records online. One of the benefits from Kaiser is access to our medical records. If only we had the same access to our doctors and a sense of urgency about our care maybe I could find out what in the world is wrong with me and start to feel better !!! My last vitamin D test was done in July and that was after being on the prescription 50,000 units/ day for 10 or 12 weeks and the number was 30. So are you saying that that is still a low number? Should I suggest going back on the prescription vitamin D?
On page 48 of the book, Vitamin D Prescription by Eric Madrid, MD:
GrassrootsHealth has created the following chart showing the serum level at which a particular disease is generally prevented: http://www.grassrootshealth.net/media/d ... -24-12.pdfMinimally, levels of vitamin D, 25-OH, should be above 32 ng/mL (80 nmol/L).… Personally, I recommend trying to get vitamin D blood levels above 50 ng/mL (125 nmol/L) as this is where maximal cancer prevention lies, according to the studies. The upper range of normal is 100 ng/mL (250 nmol/L), although it appears that levels as high as 200 ng/mL pose no threat of toxicity.
You can see that only rickets is prevented at 20 ng/mL or greater. "Breast cancer incidence is reduced by 30% when the serum level is 34 ng/mL… There is an 83% reduction in incidence [of breast cancer] when the serum level is 50 ng/mL…"
You will notice that the incidence of most of the conditions listed is only reduced to any degree by levels above 33 ng/mL: #3 "40-60 ng/mL to Prevent Majority of Diseases" per GrassrootsHealth
In my opinion (remember, I have no medical background), you should discuss this situation with your PCP (she discovered your deficiency and initially prescribed). Or… discuss this with the endocrinologist you will see in a few weeks – he may even be more appropriate for dealing with your situation.
In any case, you do not have an "optimal" level of vitamin D in your blood. You need to discuss this with a doctor – there may be a problem with vitamin D absorption (I would have thought that 50,000 IU/d for 10-12 weeks would have bumped your level up significantly.)
Since you have had so much work done on your spine, I would check out the cerebro-spinal fluid and blood flow to be certain there is no obstruction. An obstruction can trigger the neurological symptoms you describe. Check out the CCSVI Alliance site, Dr Scott Rosa for information on the FONAR cine MRI which can visualize the condition of your spinal fluids.
CCSVI Alliance www.ccsvi.org/
I believe there are 15 FONAR centers in the US, one in London. First things first.
Best regards, Vesta
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