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Living With Fibromyalgia - Online Support Group

It is official

#1

I now begin a new journey. I have been diagnosed with MS. I see my Rhumy on Monday and will have him to comfirm or not the diagnoses of Fibromyalgia. Since MS is an Auto immune condition I guess a person can have both... Maybe... non the less I will begin taking predizone asap... orally and tapered. among all the other prescriptions that were changed to help my various other junk going on...They will be sending a nurse to my house to teach me and my hubby how to do my injections... I am not so sure I can do this to myself... although the thing is preloaded and I would only have to place it in the right position and place and push a button... I may push that button the first time but the second time I may not... that is where hubby would have to push that button for me... ugghhhh... I am off of the Cymbalta... and will wean off the Nurotin Neuro has prescribed something different for nerve pain...

I am not sure how I am supposed to feel right now... well actually I feel like I did yesterday... like crap...LOL

HUGGS

#2

Hi Belinda,

So glad that you know what is going on now, and you were able to get diagnosed early. Early treatment will really help get your MS symptoms under control and hopefully you will go into remission. You might even end up feeling better than if you had fibro! There are so many meds that exist now to treat MS.

I wanted to allay your fears over doing the self-injections. The auto-injectors are very easy to use, I’ve used one for Imetrex injections for migraines for years. The needle is very tiny, it hardly hurts and is just s little pinprick. It’s a closed barrel, you don’t see the needle, you just press the barrel against your thigh (or whereever) and press the button.

Hope you will be feeling better soon!
Starr

#3

Okay, it is good you have gotten to the next step and gotten a diagnosis, Belinda. Much research being done on MS that you are quite likely to benefit from. Perhaps the new treatments can have you feeling better soon. I hope so.

#4

Thank you both... I am just so thankful that Cullman Al. has the one of the best MS Neurologists in the States. I thank God for making me the person I am and thus one that just kept pushing for real answers to my growing problems...I feel now like a loose wheel in this support group...

Last year when I got the Fibro diagnoses I found this group. What an awesome support system!!! I had a realization that I didn't quite fit in here... I had a melt down ... heck I have had so many melt downs just trying to be heard... I am not sure the damage that has been done can be undone... they can only stop new stuff... if I am lucky. I have been dealing with these symptoms for aprox. 4 years... each year something else came along... I am frustrated that a diagnoses was delayed because I was not properly tested for ALL Auto immune stuff.... Even though I asked my GP to test me for everything... I was never tested for MS. Since getting the diagnoses of Fibro. that was the end ... everything was because of the Fibro. But being a part of this group enlightened me ... Something more was going on with me... and I had to insist my Drs heard me... well now I guess they will... although that precious time I can't get back and could have made a difference in where I am at today....

Once again I must say.... make sure that your DRs. rule out MS... the only way to do that is to see a Neurologist and get a Brain scan... oh and not in an open scan... those are JUNK...MS must be ruled out. Each year I have gotten worse ... Be an advocate for yourself...

Huggs,

#5

Belinda,
I know it must be both painful and a relief to get this kind of news and you will need time to process all of this. I wish you the best in the process and soon on your road to wellness.
Hugs,
Laurie

#6

Awwwww, Belinda, I 'm sorry about your new diagnosis. But boy were you ever right, you DID have something going on other than fibro. At least I hope that you can cross fibromyalgia off your list.

You must feel "better" knowing what's going on. And at least now you can get appropriate treatment that hopefully will help you to feel and function better. Apparently MS drugs are more effective than they used to be. I was surprised to see that some MS people function MUCH better than most fibro people and were even able to return to work. My wish for you is that yours is such a case.

Hugs,

Petunia

#7

Hi Belinda. I have kept up with your posts. And I admire you for being the best advocate for yourself. I am sending you much love and many
HUGGGGGGS !!
Suzie

#8

Thank you all.... I go see my Rhumy today... this should be quite interesting as the last time I seen him he straight up told me that "I did not have MS". He agreed to refer me to the MS specialist but fell short... his nurse told me over the phone that I did not need a referral that I could call myself and get an appointment. Well in order to see the MS specialist I did have to have a referral. Now I have a very good relationship with my Rhumy...but not sure how he is going to react to being wrong. I believe after this appointment I may relieve myself of seeing a Rhumy. The cost, the time and the added stress...time to begin adjusting my care plan. I believe the Neuro can manage it all as well...that is if I still have Fibro. I will also begin searching for a new GP...When I told her I thought I had MS she referred me to pain management...that Dr. has done nothing. so I wont be seeing him either... look I just saved myself 65 dollars a month...LOL I will need that cash to help pay for my new meds ... which are not cheap... Not even sure if I have ins. anymore as I have not gotten paid for my short term disability for a month now. I am trying not to stress over that...yet. Waiting on long term approval and Social security...

I chose to stop working as I was out more than I was there. My ability to deal with any stress is none. My ability to properly do my job was challenging. I would forget what I was doing. I was dropping bolts and parts all the time. I was running into things and tripping... well I used to joke and say my foot stuck to the floor... I had no idea how accurate that description actually was to foot drop. My mind needs peace my body needs to relax... and I need the summer to go away...lol

OK... I am rambling... Y'all are great People and by far the best support group ever...

HUGGS, Belinda

#9

Hi Belinda, I wanted to check in and see how you are doing? How did the Rheumy appointment go? You are a very strong woman and will make it thru this. Hugs.

#10



Auburnm said:

Hi Belinda, I wanted to check in and see how you are doing? How did the Rheumy appointment go? You are a very strong woman and will make it thru this. Hugs.

Well Rhumy said he felt I did not have MS... he went on about time and space... which I was thinking in my head " Do you even read the notes in my Journal I have had you copy and place in my file?" . he was supposed to refer me for a second opinion... I still have not got that referral. He told me to hold off on the Betaseron injections until I got the second opinion... I told him this was my second opinion...lol... he said well get a third. So as it stands I still have the Fibro along with MS. I do not feel the need to have another MS dr. tell me I have MS... I know that is correct...

I started the Betaseron injections Sunday and I gave myself my first shot that day... It was not as bad as I had thought it would be. So now I have given myself 2 injections and Hubby gave me one last night... He has to do the ones in the back of my arms... he did a real good job.

I know now that I will never get back life as I knew it. These shots are for life. Well the MS treatment is for life...I am a fighter and will do what is needed to make my life as normal as I can.

Thank You for checking in on me HUGGS,

Belinda