Finally diagnosed.

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txcola
Regular Member


Date Joined Jul 2013
Total Posts : 194
   Posted 10/13/2017 12:26 PM (GMT -7)   
After years of frustration and misdiagnosis, I gave up on my "probable MS" diagnosis. I agreed that maybe I did have fibromyalgia. Turns out I do not.

In July, I began driving erratically. I would catch myself jerking the wheel back and forth. My son told me to go get my eyes checked, so I did. While I was there, I notified them of the lesions in my eye that were found two years ago. I explained i have no answer for them, but other than a few flares a year where I can not see well, all was okay.

As luck would have it, ( thank goodness for electronic records) I was diagnosed by an eye specialist two years ago. The new eye doc read his diagnosis, sent pics to my neuro and told me to go see him.

I scheduled a visit- and developed foot drop for 17 days and had it when I went to neuro. I failed the gait test and was diagnosed. Of course the giant new eye lesion-- and eye doctor's diagnosis helped tremendously.

YAY! I was so happy to finally have an answer--

This definitely proves how hard it is to diagnose, and I hope this gives anyone who is suffering with limbo or a mis diagnosis courage to keep trying to find a doc that's good and who will listen.

Be well yall.

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 10/13/2017 3:38 PM (GMT -7)   
Txcola,

I'm so sorry you've been diagnosed with MS! Will you be starting a disease modifying medication? Good luck! Keep us posted!
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

txcola
Regular Member


Date Joined Jul 2013
Total Posts : 194
   Posted 10/13/2017 7:44 PM (GMT -7)   
Yes, I will be. Right now we are exploring my options covered by my terrible high deductible insurance. For now, I am taking high dose d3, lions mane mushroom, baclofen, steroids, and turmeric for pain/inflammation.

My insurance only pays for generics. Anything else is $$$$$$. I am going back to doc in a few months, and plan to have info from insurance about what they will pay for so that we can work out a better treatment plan. For now, my "mix" works most of the time. But during bad flares, all bets are off it's a juggling act to try to cobble together relief. I am researching specifically about drugs for fatigue. Mine is terrible because I live in the South. I will likely also need something for the foot drop as well at some point, as it's really severe.

I am not upset that I have MS. This has been a journey and I am a bit angry that I had no access to disease modifying drugs for so long. If I had taken them, I probably would not have so many issues. Being angry solves nothing, though. I have to deal with my progression, and work to figure out how to keep it at bay.

I have RRMS. -- but it has steadily gotten more severe.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17497
   Posted 10/14/2017 2:26 PM (GMT -7)   
Hi, Txcola! I'm glad to see you popped over here. You do know you are still welcome in the fibro forum too. We have many of the same symptoms and some suggestions could help you.

Anyway, the main reason I'm posting here is I see you take turmeric. Supposedly, turmeric is difficult to absorb. I was taking it a while back and came across a product called Curamin. I used it for quite some time and it really helped me. They have a process that helps with the absorption and the turmeric get in the system easier. I did find it to be good and the reviews are great. So, maybe check that out and see if it helps you more.

Meanwhile, take care of yourself. I know you will get a lot of help in this forum. Feel better!

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

txcola
Regular Member


Date Joined Jul 2013
Total Posts : 194
   Posted 10/14/2017 2:59 PM (GMT -7)   
I take turmeric with black pepper. I have no issues getting it to absorb and work. I also eat it a few times a week as well. I try to take it "as needed", because long term use is not very researched, nor advised by some. ( probably those who'd rather sell expensive pain pills. )

I did take it for seven months straight once, and it was by far the most pain free I'd been in years.


Thanks!

Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3546
   Posted 10/14/2017 8:51 PM (GMT -7)   
There is a generic version of copaxone. You may want to look into that. It's been a solid medication for me. I'm extremely satisfied with how it is working for me.
Diagnosed with MS July 2006, Celiacs 2012, RA January 2017

I have no lesions on my soul and so I live with no limits.

sglasse
New Member


Date Joined Nov 2017
Total Posts : 1
   Posted 11/13/2017 11:32 AM (GMT -7)   
Im so sorry that you got the MS diagnosis but I understand your relief. It took 2 years to diagnose me and I finally said diagnose me or commit me. But really when that diagnosis comes in then you can begin the effort to fight the disease. The longer you have it and cant medically fight back the worse it can get (hopefully not in your case). I was really happy when they told me because I knew I could fight back and I didnt have a life threatening disease
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