Setting the MS community back 30 years…

I was diagnosed in 2016 with MS, some may say that is a pretty recent diagnosed but in the two years that has since passed it’s felt like a life time ago.

I went through some pretty rough patches and a rollercoaster of emotions. I had other stuff and other health issues (failed back surgery that initially put me out of work in 2011 – – and I LOVED working and I worked a LOT- – fibro, Hashimotto’s, chronic migraines, chronic pain syndrome…I could keep going but you get the picture). Soon after I was unable to work we lost our home due to my Long Term Disability (LTD) denying my benefits, which I eventually won back but it was too late to save our home. We ended up moving away from my family one state over to help with my in-laws, which didn’t work out so well.

Like I said a rollercoaster of emotions and some dark depression but fast forward through those very long 2 1/2 years (well 8 if you count the year I became disabled) and here we are. We are in our own home, I have the most adorable granddaughter ever that is only 6 hours away and I have finally come to terms with not ever being able to work again due to my illness(es) and pain.

Since my original diagnosis my MS has gotten worse. After a few long discussions with my MS doc he decides to change my medication from Copaxone to the new “O” drug. It took a while for my husband and I to agree to that but we ultimately did.

I had just gotten my grant money for Copaxone a couple of weeks prior to my doc making the change and the company that made Ocrevus called saying I had to drop that in order for them to help with my cost of this really expensive drug. So I called and dropped it and was told if I do I can not re-apply with this particular grant company until next year.

Two days after dropping the grant I met with my doctor and he decides to do an MRI (why didn’t he do one prior to making his decision to switch drugs you ask? Well, that is the question I am now asking) however my MRI’s were stable.

So, much to my surprise, after a little over 2 years of seeing the same MS “specialist”, the one that actually diagnosed me with MS, he hits me with the…you are suffering from major depression and that’s where all of your symptoms are coming from, not your MS. He even questioned me having MS after seeing my latest MRI (yes, he WAS the one who diagnosed me). No change and very mild which was the same as the very first ones he looked at (except in 2016 he swears he saw a lesion in my spine but now re-looking at it he can’t find it). He asked if I had gotten a spinal tap for the original diagnosis (again, same doc that diagnosed me and yes he put me through he spinal tap and it came back with protein/bands).

So now I’ve lost my funding for Copaxone (which he wants me back on), and we all know how fast the money runs out not to mention I have one less place to ask for funding due to me cancelling the funding from them. I was so angry I fired him! And it took me 2 months to find new funding for Copaxone!

I was reluctant to see another MS specialist at the same center but the nurses talked me into it. As I was afraid of, this new doc read the records from the last 2 appointments, read my MRI’s and said he agreed with my last doctor. He NOT only agreed with him he also wrote in my records that I was “embellishing” my symptoms. He said I need to stay on Copaxone in which I did agree with; however, after going through all I went through and am now in a much better place mentally I did not agree with the severe depression and needing to be on a heavy dose of depression medication.

So I asked myself, how is it that two doctors who are specialist in their field and primarily work with patients with MS at an MS Center tell you you are severely depressed and this is where all of your symptoms are stemming from?

Well, wouldn’t you know, I found out that some doctor working with patients with MS decided to write a paper (which got published) for the entire MS community of doctors to read. It stated that he believes that most MS symptoms are caused from DEPRESSION in patients with MS and that it is NOT the MS causing MS symptoms. So am I to believe that everyone out there who suffers from depression has MS? I also just saw today on a research site that I follow that they are looking for patients with MS for an MS depression study.

So now that this paper is out there for all of the MS Community of doctors to read, and apparently when a paper is published it is the holy grail of what ever it states, which leaves me to believe that all of the MS doctors are going to be writing more scripts for depression than of scripts for DMD’s!

I feel like this will set the MS community back so far. Even though I was diagnosed in 2016 I can remember back in my early 20’s experiencing what I now know is MS. I ignored it (that’s how we were brought up) until my 30’s when I finally started to see doctors about it, just to be told I was crazy or a hypochondriac or that there was nothing they can find, (not one of them ran any test associated with MS, back then it was considered an older person’s disease). But, mainly they said that I was depressed and needed to be on medication. I know a lot of other MS’ers my age who had been told the same thing, that they were crazy, that nothing was wrong with them, that they are depressed here is a pill. Now, NOW, with all of the research, the MRI’s the spinal taps, NOW, with everything they have to diagnose and treat MS this is what they are going back to? A pill for depression (by the way, I did agree with taking something, why I don’t know, just to appease the doctor as us women usually do, but it was a “step” medication that you increased over a few weeks but by the time I got to the 2nd step I was having severe chest pains in which he replys, go back to taking the lower dose and stay on it…really?)

So now here I am, firing another doctor and hoping that the next one who is not in the same practice can come to her own conclusions. After 2 falls (since they diagnosed me as “severely depressed and refusing to take medication”) needing PT for hurting myself during one of those falls, balance issues, pain, and all the joys of the numbness and tingling, dropping stuff and forgetting my name that all of us MS’ers go through, I truly believe that this is NOT me being severely depressed…this is just MS.

Now, am I saying people with MS do not suffer from depression and that some people do very well on a depression medication? No, that is not what I am saying. I probably would have benefited from it a couple of years back when I was going through all of the personal stuff I went through. What I am saying is shame on these specialist who are blaming depression for our MS symptoms as if we are crazy and making it up. Shame on these doctors who are throwing pills at us saying it will help our symptoms. I’m wondering who was actually behind this paper or if any money was given by big pharma to the doctor who wrote the paper that got published…these are just my thoughts and frustrations. I am hoping that this doesn’t throw the MS community back 30 years…we are not crazy, our pains and symptoms are real.

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