Multiple Sclerosis Diagnosis & Treatment..

I got diagnosed with Relapse Remitting MS in approx Aug 03 but I had been unofficially diagnosed by a professor in the Royal Eye and Ear clinic in the May.  To get the official diagnosis they put me through 2 tests.

  1. A lumbar puncture (to check for the presence of some proteins in the spinal fluid)
  2. An MRI scan (to check for legions/plaques on the brain ie damage done to the myelin)

I suppose they made the rest of their diagnosis observing me, my left leg was still uncoordinated and I had lost complete vision in my left eye.  From what I have read since, eye problems are often one of the first signs of MS. To treat an MS attack oral steroids are prescribed by your GP or your neurologist, they work fantastically by reducing the inflammation and making you feel normal again.  They also make you a little moody and keep you awake at night (so beware) but all in all they are a saviour.  I suppose the unfortunate thing about them is that they can’t be taken all the time because if they are they become ineffective.

My second big attack (what they call when symptoms reappear) happened in the Dec of 03, everything on my left side had pretty much returned to normal but all of a sudden, I was having issues with my right leg and then out of no where the sight went again, this time in my right eye.

In Jan 04, my medical team decided that I needed to go on a disease modifying treatment, they said that my attacks where close together so getting on something to keep things at bay was my best option.  I was given the choice of 3 needles, one of which I would need to inject into myself in regular intervals.  The injections where for different interferons and would be administered weekly (big horrible long needle), every 2nd day or daily.  Being the very brave person that I am I decided that the smaller needle every second day would be my drug of choice.

I commenced by treatment somewhere near the end of Jan in 04 when my medical team had organised for the drug nurse to call to my house and show me how to do it.  I think I cried through the first time but I had my Mum and Sister holding my hand, it is probably just the shock of it, going from being a World Kickboxing Champion to a sick person who needed injections in the course of a few months.

Oct 04
So off I went doing my injections as instructed by the professionals, little did I know that they weren’t suiting me, I have subsequently discovered that the treatments have different effects on people as MS is different in everyone.  I got so bad that I couldn’t walk at all and had to be hospitalised.  When they hospitalise you, they give you steroids (magic pills) but not orally through and IV drip, it was scary not being able to walk but I was really hoping that the steroids would give me the boost that I needed.  I had also started to suffer really badly with Kidney infections and need to go to the bathroom what felt like 24 hours a day. 

After 5 days on IV steroids, I was like a new woman, I could walk again and I was me.  I couldn’t wait to get out of hospital but I also wondered what could I do as the injections were not working.

Just before the flare up, I had been told about Low Dosage Naltrexone (LDN) and how it had helped some people with MS, it was a drug used to get drug addicts off drugs but in smaller dosages could help prevent relapses and MS progression, it actually boost the immune system.  This was a completely different principle to the injections as they were actually suppressing the immune system to try to stop it attaching itself.  After my hospitalisation, my neurologists didn’t have any options for me except Mitoxantrone, which is a chemo drug that had been used by some MS patients to try to suppress the disease activity, it has also resulted in some people getting cancer.  So I left the hospital on no MS medication. 

So what to do, it was a confusing time for me so I decided to try the LDN, it wasnt clinically proven to do anything but surely if it was boosting the immune system it was doing something?  I started taking it in Nov 2004 and have been on it ever since.  Do I know how much it is helping, no but I am sure it is doing me no harm.

So at that point my treatments and therapies consisted of
– MS swank diet
– Low Dosage Naltrexone (LDN)
– Lyrinel XL (for bladder during the day)
– Amitripyline (for bladder at night)

– Counselling
– Acupuncture

Thankfully when I got out of hospital the next couple of years were pretty stable, no major attacks or changes in the MS. 

Jan 12 updated list of treatments and therapies:
– Great friends and family
– MS swank diet (see post on it, amazing really, FATS really matter in MS)
– Copaxone (Glatiramer MS disease modifying drug)
– Vit D3
– Vit B12
– Low Dosage Naltrexone (LDN)
– Botox in bladder (or Lyrinel XL when starting to wear off)
– Amitripyline (for bladder at night)
– Macrodantin (to prevent kidney infections)
– Counselling
– Reiki
– physiotherapy and Gym
 

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Discussion

5 thoughts on “Multiple Sclerosis Diagnosis & Treatment..

  1. Your story is appreciable and it will give courage to the person who are suffering from multiple sclerosis.

    Posted by justincamp | September 22, 2012, 12:39 pm
  2. Hi Nicola,

    I am considering going on the Swank
    Diet. I will invest in the book, but just wondering do you find the cod liver oil beneficial and is seven seas acceptable? I am on a bit of a vitamin binge recently! B complex (regularly check my B12 levels which are now good, was once low in 07 & so got shot of B12) Vit D3, lysine to help prevent mouth ulcers & coldsores. Also I Wonder how have your ferritin levels been since being on the diet with the red meat restriction? My ferritin levels tend to be on the low side generally as it is & have experienced dizziness which probable was down to my low ferritin.

    Your blog is very impressive-well done
    I look forward to your posts.

    Posted by Aileen | August 24, 2012, 10:27 am
    • Good morning Aileen
      Thanks for the lovely comments. Overcoming MS is in my opionion a better book for you, it has a great section on Omega 3 supplementation, and why it is so beneficial for us, I would pick that up ahead of the Swank diet book as it would help you to make a decision about the cod liver oil tablets and it has details on the diet. I take Omega 3 tablets that are prescribed for me, they are called Omacar. Great that you are on the Vit B12 and Vit D, I take both of them and have just started Magnesium which I found out about on a Facebook MS friends page. The page is great because it is all people with MS and we ask each other for advice on what has worked for us and what hasn’t. If you look me up on FB I can add you. I have been on the Swank Diet for years but can be a bit hit and miss, I never have dairy, chocolate or red meat but occasionally a slice of cake or a scone, need to kick myself in the butt to get back in gear 🙂 I havent had my Ferritin levels checked but havent experienced dizziness so hope that it is ok. To replace meat, I do have lots of the Quorn products that I use for stirfrys, spaghetti etc.
      I hope that my answer helps and let me know if you have any other questions.
      Glad to hear that you are being so proactive, to me that it is the Key.
      Mind yourself, take care
      Nicola

      Posted by msinthecity | August 24, 2012, 10:41 am

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