Welcome to ThisIsMS

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Wolfiesask
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Location: Saskatchewan, Canada

Re: Welcome to ThisIsMS

Post by Wolfiesask » Wed Oct 29, 2014 6:21 pm

I am 41, female and from Saskatchewan, Canada. I am in the midst of being diagnosed, although my neuro says she is 99% certain, but we're waiting on 2 brain scans and some blood work that was sent to the Mayo Clinic. I started experiencing numbness in late spring 2013 that would migrate from my left leg, to right leg, to left abdomen, to underside of left arm, etc. I was referred by my GP to a Physiatrist for nerve conduction tests that were completed Christmas week and was told there was "no sinister neurological reason" for the numbness and that I would need to learn to live with it. I carried on with life, the numbness migrating, but never really leaving.

I started experiencing vertigo with an episode in June 2014, another in July and one in August with several smaller episodes that finally subsided. I fell on my back steps on September 5th, having lost my footing, and landed hard on my backside and thighs. I had pain, strength and mobility issues as a result and finally went to see a local GP when I had issues lifting my left leg into the car after grocery shopping. He referred me to my neuro and I was on the urgent callback list for spinal MRI's which were done 2 days later. The initial MRI shows numerous short segment lesions on my spinal cord, in addition to congenital spinal stenosis. I am also insulin-dependent and had a heck of a time when taking 1250 mg/day of prednisone, every other day for 5 doses. It seems to have helped somewhat, but now the vertigo is back. :sad:

I am not on any MS-specific meds at this time and my neuro wasn't happy when I said that my bf and I have been trying to have a baby ("Do it fast!", like we need the added pressure). I am trying to be patient with the process, but when I call my neuro's office and find out that my results are in but she hasn't reviewed them yet and am told 'don't call us, we'll call you' I get frustrated. I am healthy otherwise and have a great job and want to get back to work. I have been off work since October 14th and just want to get this show on the road. I would prefer to do as much as possible with diet and supplements, as what I have read so far about most of the meds isn't appealing. I am grateful to have found this forum and look forward to learning a lot from the members. Thanks! :-D

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lyndacarol
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Re: Welcome to ThisIsMS

Post by lyndacarol » Thu Oct 30, 2014 10:44 am

Wolfiesask wrote:I am 41, female and from Saskatchewan, Canada. I am in the midst of being diagnosed, although my neuro says she is 99% certain, but we're waiting on 2 brain scans and some blood work that was sent to the Mayo Clinic. I started experiencing numbness in late spring 2013 that would migrate from my left leg, to right leg, to left abdomen, to underside of left arm, etc. I was referred by my GP to a Physiatrist for nerve conduction tests that were completed Christmas week and was told there was "no sinister neurological reason" for the numbness and that I would need to learn to live with it. I carried on with life, the numbness migrating, but never really leaving.

I started experiencing vertigo with an episode in June 2014, another in July and one in August with several smaller episodes that finally subsided. I fell on my back steps on September 5th, having lost my footing, and landed hard on my backside and thighs. I had pain, strength and mobility issues as a result and finally went to see a local GP when I had issues lifting my left leg into the car after grocery shopping. He referred me to my neuro and I was on the urgent callback list for spinal MRI's which were done 2 days later. The initial MRI shows numerous short segment lesions on my spinal cord, in addition to congenital spinal stenosis. I am also insulin-dependent and had a heck of a time when taking 1250 mg/day of prednisone, every other day for 5 doses. It seems to have helped somewhat, but now the vertigo is back. :sad:

I am not on any MS-specific meds at this time and my neuro wasn't happy when I said that my bf and I have been trying to have a baby ("Do it fast!", like we need the added pressure). I am trying to be patient with the process, but when I call my neuro's office and find out that my results are in but she hasn't reviewed them yet and am told 'don't call us, we'll call you' I get frustrated. I am healthy otherwise and have a great job and want to get back to work. I have been off work since October 14th and just want to get this show on the road. I would prefer to do as much as possible with diet and supplements, as what I have read so far about most of the meds isn't appealing. I am grateful to have found this forum and look forward to learning a lot from the members. Thanks! :-D
Welcome to ThisIsMS, Wolfiesask. Although you have not asked for comments or opinions, I hope you are open to hearing mine.

All the symptoms you describe (numbness, vertigo, falling – imbalances, pain, weakness, lesions, infertility) are consistent with a vitamin B12 deficiency. I hope this is the first condition your neuro, GP, or physiatrist has ruled out. A B12 blood test alone is not adequate to determine a possible deficiency – it is notoriously unreliable. A homocysteine test and/or a methylmalonic acid test is used to confirm a deficiency in the blood; a HoloTranscobalamin test can indicate a deficiency in the tissues. (My methylmalonic acid blood test was sent to the Mayo Clinic – perhaps this is what your neuro has sent to them.)

Any person at any time can develop a B12 deficiency. Vitamin B12 is critical to methylation processes in the body – a problem with methylation can cause imbalances in the pancreas (This may be part of your diabetes and insulin dependence.). Taking B supplements before B12 testing will skew the results.

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

If you are found to have a B12 deficiency, it is easily and inexpensively treated. If MS is the root of your symptoms, treatments are very expensive; and, in my opinion, there is no effective treatment since the cause of MS is unknown.

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jimmylegs
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Re: Welcome to ThisIsMS

Post by jimmylegs » Thu Oct 30, 2014 4:59 pm

hi there! may i ask how long you have been trying to conceive? i know it's a personal question but it's directly relevant to the diet and lifestyle approach you mentioned having a preference for :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

AlanAlfred
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Re: Welcome to ThisIsMS

Post by AlanAlfred » Tue Nov 04, 2014 8:50 am

Hello everyone. I was just diagnosed last Thursday. My Neuro just gave me info on some drugs and told me to pick one I wanted to try. I've decided to go with gelenya. He did prescribe me neudexta for pba. I have some acthar shots coming in the mail. Ready to feel better. I'm an underground coal miner and have been off work six months. I probably not going to be able to go back which is up setting because I am only 26, but it will be ok I guess. Sorry if I am rambling. I am new to this.

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lyndacarol
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Re: Welcome to ThisIsMS

Post by lyndacarol » Tue Nov 04, 2014 12:16 pm

AlanAlfred wrote:Hello everyone. I was just diagnosed last Thursday. My Neuro just gave me info on some drugs and told me to pick one I wanted to try. I've decided to go with gelenya. He did prescribe me neudexta for pba. I have some acthar shots coming in the mail. Ready to feel better. I'm an underground coal miner and have been off work six months. I probably not going to be able to go back which is up setting because I am only 26, but it will be ok I guess. Sorry if I am rambling. I am new to this.
Welcome to ThisIsMS, AlanAlfred.

You have not asked any questions or asked for any opinions, but please allow me to express my thoughts. This is still very new to you; we have all been where you are now.

You have not shared your symptoms with us (and it is NOT necessary that you do so), but if you went to your GP and then a neuro because of neurological symptoms, I hope one of them screened you for a possible B12 deficiency – in my opinion, it is negligent for a doctor not to test for that since anyone at any age can develop a deficiency. MS and a B12 deficiency can have the very same symptoms. The Framingham Offspring Study suggests 40% of Americans have suboptimal B12 – so a B12 deficiency is not an uncommon condition.

Do not take vitamin B supplements before testing because these will skew the results and make the test results unreliable.

We wish you all the best.

Maltom
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Re: Welcome to ThisIsMS

Post by Maltom » Thu Nov 06, 2014 3:19 am

Hello, my name is Malcolm and I was diagnosed with MS in May this year. Symptoms before the diagnosis for me were poor balance, stumbling, headaches and lack of energy. The lesions are mostly in my spine affecting my legs and I live each day with very sore legs and lack of any strength in them. Funnily, I had no pain at all until July this year and almost like a switch being activated I now have it every day.
I have elected to have the Lemtrada treatment and am currently waiting a start date in November.

After the diagnosis I tried the Swank diet, almost had my dark filings removed. - due to lack of any useful information - but have settled, after discussion with MS nurses, to try to maintain a healthy sensible diet low in sat fat and to swim regularly which I find helps a lot for the pain in the legs.

One thing I did notice was the I was put on gabapentin to help ease the burning in the legs but it did not seem to do any good, mybe even made the legs feel worse, and I have stopped taking them. Does anyone have any feedback on this medication?

Anyway, hello, and happy to answer any questions or help anyone else.

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lyndacarol
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Re: Welcome to ThisIsMS

Post by lyndacarol » Thu Nov 06, 2014 10:57 am

Welcome to ThisIsMS, Malcolm (Maltom).

Your attitude ("happy to answer any questions or help anyone else") makes you a perfect fit here!

Wolfiesask
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Location: Saskatchewan, Canada

Re: Welcome to ThisIsMS

Post by Wolfiesask » Thu Dec 04, 2014 10:37 am

I was due to see the neuro for my final results on November 15th, but won't be seeing her until January 5th now, due to her being busy. I have never been so disappointed with the Canadian health care system in my life and I work in it!

I did some reading and have decided to try LDN (low dose Naltrexone) as what I read of the MS-specific drugs wasn't promising. I know of no other illness where the docs lay out your medication options like playing cards and tell you to pick one! I am currently on 3 mg of LDN at bedtime and have already had improvements in my energy level, nerve pain, bladder function and mobility. I have taken B supplements for years, including 1 mg of Folic acid, 1500 mcg of B12/day and 500 mg of B1, so I highly doubt that is the culprit.

As for fertility issues, I miscarried in 2004 (with my now ex-husband) and 2011 (with my current boyfriend). We have been trying to conceive since the miscarriage to no avail, though we remain hopeful. Thanks!

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lyndacarol
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Re: Welcome to ThisIsMS

Post by lyndacarol » Thu Dec 04, 2014 12:15 pm

Wolfiesask wrote:I was due to see the neuro for my final results on November 15th, but won't be seeing her until January 5th now, due to her being busy. I have never been so disappointed with the Canadian health care system in my life and I work in it!

I did some reading and have decided to try LDN (low dose Naltrexone) as what I read of the MS-specific drugs wasn't promising. I know of no other illness where the docs lay out your medication options like playing cards and tell you to pick one! I am currently on 3 mg of LDN at bedtime and have already had improvements in my energy level, nerve pain, bladder function and mobility. I have taken B supplements for years, including 1 mg of Folic acid, 1500 mcg of B12/day and 500 mg of B1, so I highly doubt that is the culprit.

As for fertility issues, I miscarried in 2004 (with my now ex-husband) and 2011 (with my current boyfriend). We have been trying to conceive since the miscarriage to no avail, though we remain hopeful. Thanks!
I, also, had taken a B Complex supplement for years; I now believe the high folic acid content masked a B12 deficiency for such a long time that I developed enlarged red blood cells (macrocytosis), a late-stage manifestation. Even after discontinuing the B Complex for more than 10 months, my latest CBC still had a high MCV (mean corpuscular volume) of 95.2 (standard range: 82.0-96.0 fL).

I sincerely hope you do not have a B12 deficiency, but I urge you to request your GP thoroughly rule out the possibility. Or ask your neuro when you see her in January. A serum B12 test alone is not adequate to rule out a deficiency – request a serum homocysteine test, a serum or urinary methylmalonic acid test, or (possibly better yet) a HoloTranscobalamin (HoloTc) test, in addition.

In addition to the book I recommended to you earlier, please watch the following: "Everything You Want Your Doctor to Know about Vitamin B12"



I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

@1:23 "The neurological manifestations well precede the hematological manifestations."

This video relates four extreme cases of B12 deficiency; I do not wish to frighten you with this – obviously, your situation is not so severe as these. I wish you all the best.

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NHE
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Re: Welcome to ThisIsMS

Post by NHE » Thu Dec 04, 2014 11:14 pm

Wolfiesask wrote: I have taken B supplements for years, including 1 mg of Folic acid, 1500 mcg of B12/day and 500 mg of B1, so I highly doubt that is the culprit.

As for fertility issues, I miscarried in 2004 (with my now ex-husband) and 2011 (with my current boyfriend). We have been trying to conceive since the miscarriage to no avail, though we remain hopeful. Thanks!
According to the book "Could It Be B12?" recurring miscarriages can be sign of B12 deficiency. I realize that you're taking a fairly high dosage. However, if it's an oral tablet, then it still leaves open the possibility for absorption problems from the GI tract. In addition, if it's the cyanocobalamin form, then you may have difficulty converting it to the active forms used by the body, i.e., methylcobalamin and adenosylcobalamin. If you're not using it already, then it might be good to try a sublingual methylcobalamin tablet as these are more readily absorbed and don't need to be decyanated.

Wasithacany
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Re: Welcome to ThisIsMS

Post by Wasithacany » Sun Dec 07, 2014 7:42 pm

I have been reading through many of these posts and I am glad I found this forum. I just get so angry when I read a few posts about Drs telling make a choice on what med you would like. I have been blessed with a wonderful Dr in Rochester NY that is very passionate about treatments and informing me of all options. He goes through my MRI MRA and other scans with me present and points out every finding he feels needs attention. I started out on weekly shots for 3 years and had to switch due to progression. Thankfully I am under the best possible care there is in my area. He even has offered his personal phone if there is any problems. I am now currently under new meds that seems to be agreeing with me so far.
Thank you for having this site and plan on keeping updated on many aspects of MS and give my experiences and learn from others.

mpdogs805
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Re: Welcome to ThisIsMS

Post by mpdogs805 » Sun Dec 14, 2014 8:39 am

My 34 yr old son was told he had MS in 2009 and has been on avonex since 2010 . He's had the same side effects as everyone on here has stated . On sept 25 th he called on hisvway home and told me he thought he was having appendicitis and was headed to er to get checked , several hrs later he ask me to come and stay with him so he wouldn't have to drive home . After a few more hrs the er doc came in and told us the results of the ct scan they ran on him and told him it showed multiple lesions in his chest and stomach area and several lymph nodes were involved also and it looked like it could be cancer and to see the family doc the next morning . His mom works for our family doctor so when she told him what was said he got in touch with a specialist and me and the son were back at the hospital by 2 pm that afternoon waiting for a biopsy to be done in the abdomen area , that biopsy came back inconclusive . We waited another two weeks for specialist to decide to do another biopsy but directly in the liver area, this one came back positive for a rare bile duct cancer . Our world has been turned upside down . The oncologists told him that it was already in stage 4 and with treatment he could have 8 months to a year and without 2 to 6 months , he chose to do treatment . Before he had the chance to start chemo a interventional radiologist suggested that he try radioemobilization bead therapy . At the next ov to oncologist , the doctor said for him to discontinue the avonex shots because it does have a terrible outcome on the immune system a could be a source of the bile duct cancer . He got the 3rd part of bead therapy done on dec 2nd and was showing some improvement but yesterday around 5 pm he started having double vision and radiologist doesn't think it's from the beads but might bevfrom being off the shots for a month . Our family doctors PA said to give him a avonex shot to rule out if being off the shots had anything to do with this sudden dbl vision . I will post again soon to tell the results . It's so horrible to watch this young man go through two horrible diseases like MS and bike duct cancer.
Thanks
Concerned Dad

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jimmylegs
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Re: Welcome to ThisIsMS

Post by jimmylegs » Sun Dec 14, 2014 1:25 pm

[quote]my latest CBC still had a high MCV (mean corpuscular volume) of 95.2 (standard range: 82.0-96.0 fL).[quote] curious lyndacarol, what was the date of that latest cbc?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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lyndacarol
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Re: Welcome to ThisIsMS

Post by lyndacarol » Sun Dec 14, 2014 3:01 pm

jimmylegs wrote:
my latest CBC still had a high MCV (mean corpuscular volume) of 95.2 (standard range: 82.0-96.0 fL).
curious lyndacarol, what was the date of that latest cbc?
The latest CBC blood was drawn and tested on November 18, 2014.

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jimmylegs
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Re: Welcome to ThisIsMS

Post by jimmylegs » Sun Dec 14, 2014 3:37 pm

nice and recent. curious if you had a serum mag test at the same time, to see if that older 2.2 level had made it up into the 2.3-2.7 neighbourhood at all?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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