Newly diagnosed with MS in AZ, Hello!

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Newly diagnosed with MS in AZ, Hello!

Postby Babs57 » Thu Apr 27, 2017 8:12 pm

Hello, while trying desperately to find out the source and treatment for horrible migraines, I found out that I had a really bad issue with my neck, C5 and C6 and needed surgery, subsequent MRIs showed that I also had MS. My neurosurgeon at Barrows in Phoenix will not operate on my neck until my MS is under control. I just started Copaxone yesterday. It has taken some time because when all this came out my Neurologist was out of town and I had to wait on him to get back into town before anything could be done. I have an appt with an MS specialist at Barrows Neurological in Phoenix on Aug 31, I feel fortunate that they have reviewed and taken my case.
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Re: Newly diagnosed with MS in AZ, Hello!

Postby lyndacarol » Fri Apr 28, 2017 10:18 am

Babs57 wrote:Hello, while trying desperately to find out the source and treatment for horrible migraines, I found out that I had a really bad issue with my neck, C5 and C6 and needed surgery, subsequent MRIs showed that I also had MS. My neurosurgeon at Barrows in Phoenix will not operate on my neck until my MS is under control. I just started Copaxone yesterday. It has taken some time because when all this came out my Neurologist was out of town and I had to wait on him to get back into town before anything could be done. I have an appt with an MS specialist at Barrows Neurological in Phoenix on Aug 31, I feel fortunate that they have reviewed and taken my case.

Welcome to ThisIsMS, Babs57.

I had surgery (cervical laminectomy at Mayo Clinic, Minnesota) for what doctors thought was a herniated disc (C5 and C6), but they were wrong and surgery improved NOTHING. A few months later I was diagnosed with MS.

I realize that you are in the Phoenix area, land of wonderful sunshine; but today's lifestyle greatly reduces unhindered exposure to sunshine.

Low vitamin D status despite abundant sun exposure. (2007)
N Binkley, R Novotny et al.
http://www.ncbi.nlm.nih.gov/pubmed/17426097

Conclusions: These data suggest that variable responsiveness to UVB radiation is evident among individuals, causing some to have low vitamin D status despite abundant sun exposure. In addition, because the maximal 25(OH)D concentration produced by natural UV exposure appears to be approximately 60 ng/mL, it seems prudent to use this value as an upper limit in prescribing vitamin D supplementation.


Severe vitamin D deficiency in Hawai'i: a case report. (2006)
M Bornemann
http://www.ncbi.nlm.nih.gov/pubmed/16602611

Severe vitamin D deficiency would appear unlikely to occur in Hawai'i, which has abundant year-round sun exposure. This case report of a woman with no obvious risk factors for vitamin D deficiency who was found to have severe vitamin D deficiency and coexisting primary hyperparathyroidism should alert health care providers to be more aware of vitamin D deficiency in Hawai'i.


When my vitamin D level was tested, the result was 24 ng/mL – frankly deficient! If your doctor has not ordered the vitamin D blood test called "25-hydroxy D" (He probably thinks it is impossible for anyone living in Arizona to be vitamin D deficient, but that is incorrect.), ask for the test (any doctor can order it – even your GP or neurologist) and request your own copy of the test results so that you have the actual numbers.

GrassrootsHealth (http://www.grassrootshealth.net) recommends the vitamin D level should be at least 40-60 ng/mL (some neurologists recommend 70-100 ng/mL for their patients who have neurological symptoms).

As you may know, your symptoms are common to many conditions; for example, migraines can result from vitamin B 12 deficiency or from magnesium deficiency. Your symptoms could also result from vitamin D deficiency, which can affect ANY system in the body.
Last edited by lyndacarol on Sat Apr 29, 2017 8:16 am, edited 1 time in total.
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Re: Newly diagnosed with MS in AZ, Hello!

Postby Babs57 » Fri Apr 28, 2017 10:52 am

Thank you, I recently had my Vitamin D rechecked. It was perfect. Several years ago I had low Vitamin D and took mega doses. I also have Pernicious Anemia and have to take B12 shots every 2 weeks. My MRI shows severe forminal stenosis on both sides of C5 C6, I have seen the MRI myself. Also, the disk is ruptured inward pressing against the spinal cord. I have no doubt this diagnosis is true. They have advised me that even if the surgery is done, it may not help my pain which is significant. I have to take Gabapentin daily for the electric shock feeling in my neck, shoulder, arm and hand. I also have numbness and tingling, pain in the head to the touch. It all just sucks. My husband has Ankylosing Spondylitis and I am his caregiver. I can't carry 5 lbs anymore without pain... Some days I am just DONE.
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Re: Newly diagnosed with MS in AZ, Hello!

Postby lyndacarol » Fri Apr 28, 2017 11:57 am

Babs57 wrote:I recently had my Vitamin D rechecked. It was perfect. Several years ago I had low Vitamin D and took mega doses. I also have Pernicious Anemia and have to take B12 shots every 2 weeks. My MRI shows severe forminal stenosis on both sides of C5 C6, I have seen the MRI myself. Also, the disk is ruptured inward pressing against the spinal cord. I have no doubt this diagnosis is true. They have advised me that even if the surgery is done, it may not help my pain which is significant. I have to take Gabapentin daily for the electric shock feeling in my neck, shoulder, arm and hand. I also have numbness and tingling, pain in the head to the touch. It all just sucks. My husband has Ankylosing Spondylitis and I am his caregiver. I can't carry 5 lbs anymore without pain... Some days I am just DONE.
There is much controversy about the standard ranges used in labs for nutrient testing. I am curious… What was the number on your Vit D test that was considered "perfect"? What was your latest B12 test result?

If not treated in a timely manner, Pernicious Anemia (B12 Deficiency) can lead to SCD (Subacute Combined Degeneration) and irreversible neurological symptoms. (There have been malpractice cases for millions of dollars when doctors failed to look for B12 deficiency and patients' symptoms became permanent.)

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.): http://b12awareness.org/could-it-be-b12 ... diagnoses/

On page 11:
"There is much controversy as to what constitutes a normal result for this test [serum vitamin B12 test]. Because of this controversy, this test is often used in conjunction with other markers of B12 deficiency (MMA, Hcy, and more recently the HoloTc).

… We believe that the "normal" serum B12 threshold needs to be raised from 200 pg/mL to at least 450 pg/mL because deficiencies begin to appear in the cerebral spinal fluid (CSF) below 550 pg/mL.

At this time, we believe normal serum B12 levels should be greater than 550 pg/mL.…

We commonly see patients with clinical signs of B12 deficiency who are not being tested. Others who are being tested are not being treated because their serum B12 falls in the gray zone [between 200 pg/mL and 450 pg/mL]. This error results in delayed diagnosis and an increased incidence of injury."

Compare your B12 test results to those recommended by the authors.


Also, there are vitamin B12 sublingual lozenges that many people find a more convenient (less expensive and equally effective) alternative to shots. You might want to investigate this and discuss the topic at your next doctor's appointment.

Husband with ankylosing spondylitis… this has been linked to vitamin D as well. Has he had the "25-hydroxy D" blood test, too?

Ankylosing spondylitis (a type of arthritis) worse with low vitamin D – Jan 2012
http://www.vitamindwiki.com/Ankylosing+ ... 3+Jan+2012
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Re: Newly diagnosed with MS in AZ, Hello!

Postby Babs57 » Fri Apr 28, 2017 8:59 pm

I do not know the numbers for my Vitamin D results. It was by a specialists I saw at Riverside Hospital in Columbus OH. She was very concerned about my Vit. D. Also the B12 numbers, I cannot give info on that either, I go by what my Drs, which I do try to have good ones, don't always give me these numbers. I take the shots every 2 weeks. I have tried the sublingual option and also the nasal spray, these do not work well for me. The shots do not bother me. They don't even hurt. My husband gives them to me in my upper arm.

AS is a genetic disease. There is a gene that is responsible for it. Usually something will trigger in the late teenage or early adulthood.

Right now I am not searching for reasons, I am looking for help, understanding of what to expect. I lived less than 5 miles from Dupont in Washington, WV where Teflon was made. C8 was a byproduct. It was in our drinking water, our ground, dirt, air, everywhere. It has been proven that C8 is a probable cause of MS. I need to move forward now, see my MS specialist and map out a plan. Right now I am in a lot of pain and anxiety. I thought a support group would be help, but a courtroom of questions is not what I need.

I am sorry. That is not support for me. That is you showing what you know for you.
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Re: Newly diagnosed with MS in AZ, Hello!

Postby lyndacarol » Sat Apr 29, 2017 7:50 am

Babs57 wrote:I do not know the numbers for my Vitamin D results. It was by a specialists I saw at Riverside Hospital in Columbus OH. She was very concerned about my Vit. D. Also the B12 numbers, I cannot give info on that either, I go by what my Drs, which I do try to have good ones, don't always give me these numbers. I take the shots every 2 weeks. I have tried the sublingual option and also the nasal spray, these do not work well for me. The shots do not bother me. They don't even hurt. My husband gives them to me in my upper arm.

AS is a genetic disease. There is a gene that is responsible for it. Usually something will trigger in the late teenage or early adulthood.

Right now I am not searching for reasons, I am looking for help, understanding of what to expect. I lived less than 5 miles from Dupont in Washington, WV where Teflon was made. C8 was a byproduct. It was in our drinking water, our ground, dirt, air, everywhere. It has been proven that C8 is a probable cause of MS. I need to move forward now, see my MS specialist and map out a plan. Right now I am in a lot of pain and anxiety. I thought a support group would be help, but a courtroom of questions is not what I need.

I am sorry. That is not support for me. That is you showing what you know for you.
Obviously, I misunderstood your reason for posting at ThisIsMS. I apologize – I thought you were seeking information and I intended to help by sharing what little I have learned.

I sincerely wish you the best.
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Re: Newly diagnosed with MS in AZ, Hello!

Postby aetex » Sat May 06, 2017 8:26 am

Hi--
Welcome to the forum and sorry for all that you are going through. I completely understand your frustration as there is rarely a post on this forum that does not get barraged with Vit D or B12 references.

Take it one day at a time. It is good that you are going to an MS specialty clinic as they will be the most up to date on your evaluation and your treatment/care from here on out. A lot of MS clinics also include support services such as nutrition, physical therapy, social work, etc.

You didn't indicate that you were actually having any MS symptoms so I am unsure what the neurosurgeon meant by "getting it under control." Hmmm... I suspect that this is one specialty unsure about the expectations of another specialty. Hopefully your surgeon and MS doc can work together to get you on the right track.

I was started on Copaxone 2 ½ years ago. I have not had any new lesions develop on MRI and I have not had a single relapse. I am so grateful and I realize that not everyone has this luck. Getting used to the injections can be stressful and there were times when I wanted to stop. Use Shared solutions. The nurse will come to your house to do injection training and if you continue to have trouble, they will come again and again. I thought I was doing it correctly, but with their guidance they were able to get me through some nasty site reactions (I no longer have reactions at all). Also, shared solutions will send you all of the supplies to help you be more successful with the treatment.

This is a scary and stressful diagnosis. Once you are set up with a good support system and the right medical team, it will be a little less daunting. Best wishes.
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Re: Newly diagnosed with MS in AZ, Hello!

Postby Babs57 » Sat May 06, 2017 12:05 pm

aetex wrote:Hi--
Welcome to the forum and sorry for all that you are going through. I completely understand your frustration as there is rarely a post on this forum that does not get barraged with Vit D or B12 references.

Take it one day at a time. It is good that you are going to an MS specialty clinic as they will be the most up to date on your evaluation and your treatment/care from here on out. A lot of MS clinics also include support services such as nutrition, physical therapy, social work, etc.

You didn't indicate that you were actually having any MS symptoms so I am unsure what the neurosurgeon meant by "getting it under control." Hmmm... I suspect that this is one specialty unsure about the expectations of another specialty. Hopefully your surgeon and MS doc can work together to get you on the right track.

I was started on Copaxone 2 ½ years ago. I have not had any new lesions develop on MRI and I have not had a single relapse. I am so grateful and I realize that not everyone has this luck. Getting used to the injections can be stressful and there were times when I wanted to stop. Use Shared solutions. The nurse will come to your house to do injection training and if you continue to have trouble, they will come again and again. I thought I was doing it correctly, but with their guidance they were able to get me through some nasty site reactions (I no longer have reactions at all). Also, shared solutions will send you all of the supplies to help you be more successful with the treatment.

This is a scary and stressful diagnosis. Once you are set up with a good support system and the right medical team, it will be a little less daunting. Best wishes.



Thank you, I had had the symptoms for so long and kept talking to PCP and got nowhere that I did not realize until I got info on MS that these were MS symptoms. I have had the Shared Solutions nurse at my home to teach me how to give the Copaxone shots. My current Neurologist is not the MS Specialist I will be seeing in August. He did give me lidocaine to help with the shots. I am doing better with my shots. I am proud of myself. My symptoms are fatigue, I wanted to lay down and sleep in the grocery store. I have the tingling and numbness in my feet and legs. This is also in my hands and arms. I have horrible headaches, not sure where these are coming from. I have depression, have had for some time. It comes and goes. I stumble a lot, have dizziness. I had Botox for my bladder problems. My memory issues have continued to bother me. I forget words, names, dates, and lots of events and details. I have learned to take notes.
I do have pernicious anemia. It is genetic. But not the cause of this.
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Re: Newly diagnosed with MS in AZ, Hello!

Postby aetex » Sat May 06, 2017 5:38 pm

I'm sorry. It sounds like you are dealing with a lot.
Have you had a steroid treatment? If not, there is a good chance that the MS clinic will get you on high dose steroids for a few days to temper down your symptoms. In the meantime, stay active, stick to the schedule with the copaxone as well as your B12 and any other supplements, try to follow a healthy diet and don't be afraid to lean on family or friends. It sounds like you are figuring out some ways to adapt. Stay strong! MS is a beast that each one of us battles in a different way!!
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Re: Newly diagnosed with MS in AZ, Hello!

Postby Babs57 » Sat May 06, 2017 8:58 pm

aetex wrote:I'm sorry. It sounds like you are dealing with a lot.
Have you had a steroid treatment? If not, there is a good chance that the MS clinic will get you on high dose steroids for a few days to temper down your symptoms. In the meantime, stay active, stick to the schedule with the copaxone as well as your B12 and any other supplements, try to follow a healthy diet and don't be afraid to lean on family or friends. It sounds like you are figuring out some ways to adapt. Stay strong! MS is a beast that each one of us battles in a different way!!


Thanks, the only steroid treatments I am getting are the epidurals in my neck for the severe forminal stenosis at C5 and C6 and the inward ruptured disk. I am just truly tired and hurt. It has gone on for so long. I am hoping this will be my beginning of an upward climb. I know there is more that can be done for me, but I have to wait a little longer.
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