This post is a hard one to write, because I am currently in a place I didn’t think I would find myself. That is the decision on whether or not I would be taking MS medication?

 I have written before about my experiences with my diagnosis of MS, and subsequent visit to the Neurologist.

What happened to me?

Multiple Sceloris (MS) is a very strange illness and quite unpredictable. Not any two patients are the same, even with the same disease. We are all affected differently.  In June of 2018, I got an awful ‘flu- like illness that caused fevers, body aches, a bad cough, terrible nausea and headaches. I saw the doctor, who said it was viral (my white cell count and CRP were low-meaning no need for antibiotics), so I could only just stay in bed and treat the symptoms.

About a week later, most of the ‘flu symptoms were better, but the nausea started getting much worse. I couldn’t stop vomiting. The doctor prescribed anti- nausea suppositories and even medication they use for chemo patients, but it still continued.

I then started feeling very dizzy and light headed and my vision started to blur. Unfortunately when you have a neurological illness like MS, automatically we start to worry about it being a flare.

I had previously had a severe central vertigo. This didn’t feel the same, but the blurred vision and dizziness were horrible. I thought at first it could be a side effect of the anti nausea meds, which do tend to make me feel a little wonky, but even when I hadn’t taken them, I felt that way. It was getting worse, not better so I knew something was wrong.

I ended up on the Sunday seeing the locum GP who then saw how brisk my reflexes were (something that I do usually have) and decided I needed to be admitted to hospital so that I could have an MRI and all the other tests to see what was going on. I was emotional and understandably very upset. This year so far has been filled with lots of on going stress and it just felt like a nightmare. ‘This can’t all really be happening’ was the constant thought in my head. I had to go home and try and pack a bag for hospital, trying to think what I needed to take with me, despite being so dizzy that I could barely stand up easily.

In hospital, they did indeed to an MRI Scan as well as Lumbar Puncture (LP). The physician I saw wanted to rule our Meningitis or Encephalitis. They also did numerous blood tests, included blood cultures, all the strains of ‘flu, including H1N1 (swine flu), and also Hepatitis. The only results that came up, were slightly elevated liver enzymes and low platelets, as well as dehydration. I was put on a saline drip for that. Everything else was clear, including the LP.

New Lesions?

A few days later, I saw the neurologist who had a look at the MRI scan and told me there were luckily no new lesions (so I luckily didn’t require cortisone), but he believed I had something called Uhthoff’s Phenomenon. He thought that the fever and severe virus had triggered all of my old lesions ( I have a number of lesions in my brain from the MS). This would explain all the weird neurological symptoms, including the dizziness, blurred vision and brisk reflexes.

Like I said, MS is a strange illness and I didn’t even know one could have a flare up like that. The course of my disease generally has been that I have a relapse and then fully recover; I do not have lingering daily MS symptoms. I do have a twitch in my right shoulder, which is possibly the only symptom I deal with daily. As well as of course fatigue, but with also having Hashimoto’s, I never quite know what causes what.

This was the first time, I had experienced a flare up of old symptoms. It was very scary.

I was relieved there were no lesions, but the neurologist, was actually quite shocked that considering my years of having this disease, I was not on any medication (19 years since original diagnosis, see more in my story).

His concern is that without any medication, I might likely eventually end up with progressive MS, where you do not have periods of remission, but may become permanently disabled. Although I do sometimes think that these doctor’s like to scare their patients into medication, the one poignant point is that once MS may have moved onto a progressive stage, these Disease Modifying Drugs (DMDs) no longer will be able to prevent it or treat it.

My Decision:

Interestingly 4 years ago I was faced with this exact same decision. Do I go on the MS medication or not? It was a big decision then. (You can more read about that in my book). It was at that time, that I decided the cons outweighed the pros, and decided instead to start following the AIP.

I then also had a follow up with a neurologist 2 years into AIP, where it seemed I was doing well and I continued not to need the drugs.

In all that time, there have been some interesting changes, namely that there are new drugs on the market. The biggest Con before was the self injectable medication has terrible side effects. One needs to inject oneself at least 3 times a week with it, and the side effects are feeling fluey, so you need to take NSAID’s with it. ( Not good for the gut!). This was a major factor in my decision.

Today there are new drugs on the market, including a daily tablet, with much fewer side effects. I realise without any MS symptoms, it will be hard to tell if it is working to reduce my symptoms, but I will need to go for an annual MRI to assess the progress. This was probably the hardest factor in my decision.

The medication is known for successfully reducing the amount of relapses. That is one of the scary aspects of MS, that although one might not have symptoms, there still may be inflammation, as the body attacks the myelin sheath. He could see that I had previously had an active lesion on an MRI, but I did not receive treatment as I was unaware of having it.

I’m trying really hard to comes to terms with this decision to go on medication and No; it’s not an easy one!  I’m definitely not seeing it as a failure, but rather as just another tool to help me get well. I never said the AIP was going to be the only thing I ever did to help my autoimmune diseases, and don’t get me wrong, medication will not be replacing at all!

Does that mean AIP doesn’t work?

No, I think the answer is definitely not!  I still believe AIP is one of the best ways to help reverse autoimmune disease. I will still be eating as well as I can I will still be trying to reduce my stress. I have had a very stressful year and I know that is what contributed to my getting so sick. I am just trying whatever I can to make sure that I can be as healthy as I can. There are a number of great posts but other’s the autoimmune community who have had to make the decision to go on medication. Eileen from Phoenix Helix has written a great post about it HERE.

The drug I am about to begin taking, with much trepidation, is called Aubagio. I will be sure to keep you all updated on my progress on this drug and it will be interesting to assess the progress of my disease. The hardest part about making this decision, is that I don’t deal with daily MS symptoms, so it’s not as if I feel like at least I will know if it working or not. The only way to tell if there are any changes, will be in an annual MRI scan. The fact that I may in fact have to deal with actually more side effects from the medication is more of a concern.

I do realise though, that psychologically, the more I fight it and resist it, the worse the outcome may be for me. As hard as it is to accept, I must try and see this as something that is helping me and not fight it.

I would love to know your thoughts on this subject, please do share them