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.
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 !!!
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
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!!!
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?
Minimally, 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.
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