The neurologists appointment is this MONDAY! And I have decided to expect NOTHING from this appointment. The neurologist isn’t going to say definitively ‘yes, you have MS’ ‘No, you don’t have MS- scoot!’ I will most likely be told I need an MRI and or a Lumbar Puncture and I don’t even know if I want to go down that route. Firstly I am a little claustrophobic (I was locked in a boot/trunk of a car when I was younger during a game of hide and seek and they forgot about me- I was there for hours, only released when the driver heard my crying before taking off) I had planned on asking my GP for something to help with the MRI on the day but now the more I read about MRI’s and Gadolinium poisoning the less I want something put into my brain. This is from Ashton Embry (Father of Matt Embry of MS Hope)

“Gadolinium and MS – Most neurologists routinely prescribe annual MRI scans for their MS patients which include a gadolinium-based dye. The main reason the dye is used is to identify active lesions in which blood is passing through the blood-brain barrier (BBB) into the central nervous system (CNS). One of the main motivations behind such scans is to use them to persuade (scare) their patients to use a drug or to move onto a more powerful (toxic) drug with a bigger price tag.
In the summer of 2015, I posted a warning that gadolinium can accumulate in the brain following repetitive scans and potentially cause additional problems in the CNS. Notably the US Food and Drug Agency has recently issued a report (https://www.fda.gov/Drugs/DrugSafety/ucm589213.htm) that gadolinium (Gd) does indeed accumulate in the brain after a number of scans. It is still not known what problems are caused by the retention of Gd but one has to assume a build-up of a toxic heavy metal in the brain is not a good thing.
I doubt if the neurologists will discontinue, or even substantially lessen, the use of Gd-based dyes given their great value for additional drug sales. I suggest PwMS strongly question why their neurologist is using such a potentially-harmful technique to identify disease activity when physical exams are obviously the best way to determine if progression is occurring. Furthermore, if progression is occurring, I would hope that the person would seriously look at nutritional strategies to slow or halt such progression (see MSHope.com and Terrywahls.com). I can only emphasize there is no solid evidence the drugs recommended by the neurologist affect long term progression (the real disease).”

I’ve since read lots of messages from people who have had only 2 MRI’s and Gadolinium is at a crazy high level in their brain- so no, I don’t want that. If I must have an MRI, I would like it without Gadolinium.

Then there is the whole problem with seeking out a diagnosis. It will most likely take years. If I do get diagnosed with MS, I know I will just get meds pushed at me, meds which treat the symptom not the disease. Professionals who are bank-rolled by pharmaceutical companies or who have been trained to do so (by people bank-rolled by pharmaceutical companies)- will be telling me what to take and I will doubt my own instincts because they are professionals and I am not. I do know that since I started investigating my gut health- my symptoms have appeased. Now I don’t have the numbness- everywhere- everyday. Before I started this I would have numbness in my hands and feet every single day- for hours. Now I do have the occasional tingling but nothing like it was. AND I am just beginning!! AND I’m not even doing it completely correctly, I do sneak in the odd chocolate! Imagine if I was 100% strict.

So, maybe I decide I don’t want a diagnosis (until I get a big flair up perhaps) Am I content enough to live in LIMBO- not having an answer? Hi, I’m Gail and I might have MS. Could I cope with that?

2 thoughts on “Welcome to Limbo

  1. I always think it’s important to just do whats right for you! xx It might be worth just asking about the option of an MRI scan without the dye and there are open MRI scanners. I’ve never seen one but I have heard of them! Hope it all goes ok at the appointment and will be thinking of you on Monday. 🙂 xxx

    Liked by 1 person

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