texigurl 28/01/17
Last reply 1 year ago
Lost all faith

Visit with the Neurologist was extremely strained. She says while those MULTIPLE large white spots on the MRI have not changed in a year, she doesnt believe I have MS. I did get emotional-not that I want to be diagnosed with yet another auto immmune assasingator, but I have no answers. Its been two days now since my emotional break down over this and I’ve spent the time going inside myself and thinking about how I want to handle this.
It took me 12 years to get an RA diagnosis. Meanwhile alot of progression took place. I was told it was in my head repeatedly. I think that was why I broke down the other day-I cant bear going through that for another 12 years. I spoke to my husband’s aunt who has been living with MS for well over 30, and her words were “it is a fight”. I dont have that fight left in me. The doctor did rule our an anuerism tho and said the old blood on my brain was probably from the fall I took in my house two years ago.

Meanwhile, I have resigned myself to not think about this anymore. Sell my car since I can no longer drive. Buy all kinds of cooling aids to assist when I get over heated. There isnt anything more I can do. I cannot bear the thought of one specialist after another, and all the while praying that they believe me, only to feel side swiped when they give me that look that says “I think your faking”. Im over all that. It is whatever it is. I think the best way for me to deal with this is to treat my own symptoms as best I can.

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Anonymous
1 year ago

Hi @texigurl as the others on here draw breath & wind up to drop you some stonking answers, (no pressure there then for all you Shifters) I’ll wade in fast just to say you’re not alone, many of us have similar tales, we all get pissed by the medical proffession, & we think we can’t fight on, but we do, however dark it gets you’ll find an angel on here (or somewhere) who’ll turn you around when you’re upside down.

your post on here is a step forwards, & as very wise woman said to me – “it’s all about just taking one step at a time, ”

whether you see it or not you are stepping.

TTFN


potter
1 year ago

I went through something similar, I tried to get my GP to recommend MS testing for 10 years but he refused. He finally sent me to a neurologist because he thought I had hurt my elbow. The neuro talked to me for 10 minutes and said I’ll check your elbow but you need to be tested for MS. Turns out a relapse was causing the crazy nerve pain in my arm. Doctors think your a hypochondraic and are dismissive, this doctor told me even if your are diagnosed with MS they can’t do anything for you. Make a list of all of the symptoms you have over the years, you already have RA so you already have one autoimmune disorder. It is quite common to have to or three. I have had Viligio and Psorrias the doctor told me I had such small areas of it not to worry about it. They are part of a bigger picture, I hope you can find some one that will listen to you.


nicky
1 year ago

I wonder if we were to poll all the users of Shift MS how many would say ‘ they thought I’d got it wrong, was a hypochondriac or over anxious’ . I imagine alot. You will need to retreat for a while but in doing so remember before medical science there was ‘us’ no Drs, just biological messages and emotions and cognitions that alerted us to there being something wrong ‘ it’s called survival instinct’. Its purpose is only to look after you, and if you know there’s something wrong, there is !
My neuro told me as I have underactive thyroid- one auto immune disorder can often be an indicator for another.
They seem far behind you , and what’s to stop them treating ‘ as if’. Would they let you try a DMT ? If you were willing ?
Your fight will return but while it does your totally entitled to fall apart a little. I know I have.
Good Luck
Nicky


texigurl
1 year ago

Thank you all for your responses. Im really having a hard time with this, cannot get out of my own way and depression has really set in now.

My husband and I feel that part of what went on was an effort to patient dump me. It was her effort to get rid of what she determined was a “Problem patient”.

I am a nurse, no longer practicing but fully aware of medical protocols and I also do some pro bono work for a State Board of Medical Examiners. My MRI’s were done under anesthesia on the 12th of January. Her Rx to the imaging center directed them to read and compare. They compared the first two immediately, that day (Cervical and Thoracic). They totally dropped the ball on the Brain w/wo contrast. For days I continued to call, she even sent email messages and “supposedly” reported their delay to the administrative personnel. By the 13th day (my visit was the next day), my son went on the internet and found the email address of the CEO of the hospital. I sent him an email requesting that he intervene. The next thing I got was a phone call from a radiologist with the most lame reason(s) that they had dropped the ball. He swore up and down that the didn’t have the previous MRI of the brain w/o (despite the disc I gave them will al former studies on it). Made my husband run back there to get it again, and we brought it with us the day of my visit. Even yesterday I got a call from the director of the imaging center telling me that the “Brainw/o” was uploaded incorrectly to their system from the disc and was behind the thoracic study thats why they didnt see it. The disc was never read before she made her determination-thats how I know she was definitely patient dumping.

After I posted this post the other day I recieved a letter from her. Her letter doesnt make sense. In it she says :

“As we spoke about, there are definite rules about diagnosing Multiple Sclerosis using the patient’s history, physical exam and MRI findings. According to these rules, you do meet criterion for Multiple Sclerosis now. We use these rules so we don’t treat patients with dangerous drugs unnecessarily.”

So is she now saying I DO HAVE MS????? This whole experience has been traumatic. As she was asking me about new symptoms I barely got the words out of my mouth before she said “what else”, about seven times. It was as if I was being interrogated.

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