An update and a farewell!

[infiniti23]

Hi to all - just an update, my final one at that. I hope this helps someone out there who is in limbo land, wondering whatever could it possibly be. Make sure your doctors are checking for EVERYTHING.

My history has been aches and pains in all extremities, joint pain, body wide fasciculations, perceived weakness, and fatigue. I've gone through all the weird ups and downs of health anxiety through the process.

This all started a couple weeks after a bout of viral myositis.

I had the brain/cervical MRI's and an EMG, all clear. Still no diagnosis at that point, and struggling with a slow downward progression. The worries would never stop.

Until I met a very diligient and dedicated Rheumatologist.

Finally, after getting labs back that show markedly low MPV, high LDH and aldolase, a ANTI-CCP value that MAXED out the test, and some borderline anti-coagulation values - I have a diagnosis of Rheumatoid Arthritis (with a possible SLE component), caught very early. Definitely not a cakewalk, but I know it could be so much worse.

Thanks to all of you who listened to my fears and concerns, and those of you that helped me through the process. All of you will continue to be in my thoughts and prayers.

 

[MommaTeresa]

Infiniti23, thanks for the update for all of us who lurk and wonder May I also say I'm thrilled for your clean EMG etc!

I was diagnosed with RA in 2008, so while you do NOT have a fatal illness, you do not have a walk in the park either. I'm sorry to hear about your RA diagnosis. Thankfully you have a good Rheumatologist; you will find this to be priceless.

I hope you get the meds you need soon. Personally, I truly believe in a "hit em hard and fast" approach to RA, as it seems to have worked for me (but I was kicking and screaming, declaring all meds to be worthless the whole time!). However, within 2 1/2 years I was in "clinical remission," which was recently confirmed to still be the case. So, I guess I'm just saying there are hard times ahead, but also hope for better days.

DRINK WATER. KEEP MOVING. LISTEN TO YOUR BODY.

thanks again for the update...I'm hanging around in limbo-land but hopeful I'll get to post a bye-bye here soon as well )

 

[cheerleader]

So glad for you! Isn't it strange we can say that when RA is certainly difficult! My daughter has it and installed an infinity pool in their basement. It has been a lifesaver in keeping her doing the best she can. Good luck.

 

[skipper66]

Thank you for your update. So, glad that is isn't ALS. But, having Rheumatoid Arthritis isn't a good thing to have to deal with either. Wishing you the best. Kim

 

[infiniti23]

Thanks for all the wishes - and one other thing I forgot!

I am VERY Vitamin D deficient - this affects a large majority of Americans. This is a very important value to have checked out, as it can cause a variety of muscle and neurological issues!

 

[ECpara]

Although not the best news, still good news all things considered. Blessings to you!

 

[ScottKB]

Thanks for the informative update. I have many of the same symptoms that you had; joint pain, fasciculation's, perceived weakness, etc. In addition, my symptoms include warm and cold spots on my arms and legs and gait issues. I subsequently went through cervical spine surgery due to a herniation at c5/C6 and my symptoms got worse and new ones (pain in arms, hands, and shoulders) appeared. I have been returning to the neurologist and surgeons with no real answers. Of course the longer it takes to get a true diagnosis, the more you worry about possible causes that should not even be on your radar. Thus, I previously posted on this site with the question on the possibility of a misdiagnosis and the feedback was the same as it is for many; ALS is not about feelings, its about failure, etc. I have still been searching for answers and have never had a doctor look into RA. I am going to raise that question at my next visit. Thanks!