5 posts Page 1 of 1
Hi all

I wanted to post a few days ago but new phone and not remembering my password for forum meant I could not. I am now using my old phone where everything for the forum is memorised.
I had my checkup with neurologist the other day and my weight gain was my number one question. They were already worried about this though after weighing me. They said that this kind of weight gain is not something rebif would be attributed to. I had to come in the following morning for blood tests and a urine sample. I was also sent for chest x-ray and I can not remember the name of it but it was like a ultrasound of my heart. Had to go in yesterday for more blood tests and was asked did I use steroids because something like them had shown up in my bloods. The last round of bloods were to check my glands. I saw the neurologist yesterday and he said there is definitely something hormonal going on. I have also been told to stop rebif at the moment and I will be put on oral medication. I am so worried about everything and am just wondering if anyone has any knowledge or experience of this. I eat less than 1400 calories , less than 20 grams of fat and less than 5 grams of saturated fat. I have to force myself to eat. I really am concerned, any help or knowledge would be greatly appreciated!

Valley
Hi Valley
The unknown is so scarey and no more so when it is our health yet you are trying to decipher a foreign language. Without so much as an clear explanation let alone the dictionary.
I have to say first up that I don’t have a complete answer for you; you will have to ask for a translation from your doctors, written down even better.
A couple of things I can help with; the ultrasound of your heart is an echo (echocardiogram in full) which can assess heart structure and function.
Do you feel as though you are retaining fluid, swollen legs or even tummy? Some of these tests would be related to that.
It may be from other than Rebif, but one uncommon but reported side effect is over and under active thyroid (is that the glands they were testing??). Both can affect weight & fluid but this is purely speculation - which you dont need.
If something is ‘not right’ it is prudent to stop a drug if it may have a role, even if the effect is minor or reversible so be reassured rather than worried that they are acting on it.
Take some time for extra self care but in the end it is a clear explanation that you need and is your right.
Good luck,
Judy
Hi Judy

Thanks for getting back to me. The neurologist was able to tell me there is nothing wrong with my heart after tests. Yes my body is very swollen and I feel very swollen. It was the nurse taking my blood the other day that on my telling her I had put on a lot of weight and it was not what I was eating, that told me a lot of the blood tests I was having were for glands.
I am scared because I am off meds and I do not know if going on a oral medication is good. I do not know enough about oral medication. If anyone has any knowledge, again I would be grateful!

Valley
Hello Valley,

I can well understand you feeling anxious about all these developments. All this uncertainty must be very disconcerting and worrying.

I have no personal experience of Rebif, or of unexplained weight gain, but various elements of your story bring thoughts to mind. In case any of it is any use, here goes:

Weight-gain, or -loss, frequently appears in lists of possible MS symptoms. Could your body weight change "just" be a symptom? You say you are very swollen and it does sound as if fluid retention could be a possibility. You might like to look into nettle extract. It.'s a natural diuretic that does not have the side effects of some of the pharmaceutical drugs.

I listen to a lot of online symposia about health issues. What I have learnt has left me very persuaded that the various chronic autoimmune disorders have a lot in common in terms of their underlying cause. Once the system goes 'out of sync' in some way, the body's immune system can turn on itself. Sometimes that results in one auto-immune disorder but frequently more than one condition manifests itself. It is quite common for people on OMS, for example, to have gastro-intestinal issues like IBS. Thyroid issues also crop up frequently. When I listen to integrative/holistic/functional doctors talking about patients they have helped, they will frequently talk about tests revealing that the person in question had autoimmune condition X but also a virus infection like Eppstein-Barr and some hormonal issues to boot. All need addressing before healing can begin.

That, in a nutshell, is probably the difference between the integrative approach and conventional medicine. The latter is very compartmentalised into different specialities and your neurologist will only treat things to do with your brain etc etc. Would it be an option for you to consult a practitioner of functional medicine?

Weight gain frequently crops up in connection with discussions of the gut bacteria. As we now know, the 14 trillion bugs who reside in our gut control up to 70% of our immune system and are responsible for a huge part of our overall health, including our Body Mass Index. Are you taking steps to maximise your gut health, and to heal the leaky gut that all of us with an autoimmune disorder probably have?

Sleep is apparently also really, really important for maintaining a healthy body weight. I recently posted a link to an article on the crucial role of sleep. The author of the book who is interviewed in the article links the worldwide obesity crisis to the chronic sleep deprivation that abounds in the 21st century.

You say you eat less than 1400 calories a day and are still not able to shed weight. That resonates with something in an interview I just listened to with David Perlmutter. Basically it's all to do with the gut flora, avoiding sugar and minimising carbohydrate intake. The interview is available to listen to for free until midnight US Eastern Time through the link below:

http://links.cancerdefeated.com/a/746/c ... 05448066c6

Just go to the page above and choose the David Perlmutter interview (though many of the others are well worth listening to as well).

I will post again if anything helpful occurs to me.

Wishing you all the best,

Jette
The Gut Microbiome is KEY to optimal health.
The OMS site & forum are brilliant! Thanks, everyone! :D
Hi Jette

Thanks for getting back to me. I have been trying for the past year or so to help my gut health.I have not had gluten for nearly two years. I really feel this was not agreeing with me.

My neurologist is putting me on to another area for tests as he feels this is all hormonal. This of course was after him telling me it had nothing to do with the rebif ( what have I always said about doctors proving they have ticked boxes).

I am feeling very down, and one thing I am good at is understanding feelings and emotions both personally and professionally!
I am feeling very sorry for myself and having to stop myself from being angry with myself for this, as is my usual reaction,

Valley
5 posts Page 1 of 1

Who is online

Users browsing this forum: No registered users and 1 guest