I started a support group in the Groups section for those who have MS and Fibro. or those who think they have MS but have not been diagnosed. Anyone is welcome to come and offer support.
I know I have come to enjoy the people on this site and thought what a loss for me to have to go elsewhere to find support and friendship. So I do hope y'all join the group.
When I got my Fibro. diagnoses I was relieved that I was not dying. after being in this group I would read and support others the best I knew how... but the more I read and looked at myself I knew something else was going on with me... Something inside of me ... that intuition. I started reading about MS and started telling my Drs. that I thought I had MS... well I did... and getting to that diagnoses is a long story so I wont go into that... BUT I know I cannot be the only one with both Fibro and MS.
Anyways Y'all come join the Group know that you are not alone.
It is good to hear the positive comments you make about this site, it is a great place! I was privileged to share some of your journey towards your MS diagnosis, and I am glad you will still be able to share your experiences with other members. O f course we must make the Doc our first port of call for any worries we might have. I so wish you well!
Yes I agree the Dr. is always the best way to diagnoses... I know I used to always tell our members a Rheumatologist was the one to see but now... I would recommend they see both... or at least request their GP to order a brain MRI to rule out MS... I also must insist that everyone write in a journal your symptoms when they start how they effect you and how long. Never think one thing is not related... so write down all the things going on... VERY VERY important for the Dr. to get a bigger picture.
I was convinced I was dying when I started my journey... and I actually was... slowly dying... untreated MS is fatal. My journey was frustrating... but I noticed that when I would "flare" they were the same symptoms as before with a few extra things each time and they were getting worse each episode...and I noticed that STRESS was the beginning of an exacerbation. It took me years to see all this... Now I look back and think to myself... WOW. BUT I am so lucky at the same time... because my MS could be worse. Then we add the Fibro to that and .... well we got one hot mess that I am now beginning to truly get a grip on.
GREAT news, Belinda! We have needed that for a long, long time! I never understood why we had one for lupus but not MS. So thank you for being the one to unselfishly give your time and energy into making it happen. And I hope that it helps to find and talk to others in the same situation, Belinda. We certainly try and want to help but,of course, we don't know the MS side of what you are going through. Having that extra support is great. Well done!
Wow, you have come such a long way, Belinda! And have learned so much in that time! Your post has actually brought tears to my eyes, and that's quite an accomplishment due to my dry eyes! I am truly happy that now you FINALLY do know the full extent of your illness and that your actions will save your life. (Ok, tears again.)
And thank you for suggesting the journal. I've always been a journal hater but your experience has brought home to me the reason as to why we need those journals.
My blessings and best to you, Belinda. You sure deserve all of the good things in life now that you can control and reduce some of the dysfunctional elements. (I hate to use the term 'bad things" for your illness because that journey has helped you to talk to fellow sufferers and to uncover your full health story.)
Your friend,
Petunia
Ibsain(Belinda) said:
Yes I agree the Dr. is always the best way to diagnoses... I know I used to always tell our members a Rheumatologist was the one to see but now... I would recommend they see both... or at least request their GP to order a brain MRI to rule out MS... I also must insist that everyone write in a journal your symptoms when they start how they effect you and how long. Never think one thing is not related... so write down all the things going on... VERY VERY important for the Dr. to get a bigger picture.
I was convinced I was dying when I started my journey... and I actually was... slowly dying... untreated MS is fatal. My journey was frustrating... but I noticed that when I would "flare" they were the same symptoms as before with a few extra things each time and they were getting worse each episode...and I noticed that STRESS was the beginning of an exacerbation. It took me years to see all this... Now I look back and think to myself... WOW. BUT I am so lucky at the same time... because my MS could be worse. Then we add the Fibro to that and .... well we got one hot mess that I am now beginning to truly get a grip on.
Petunia... Those better be tears of JOY... Each and every one of us deserve a correct diagnoses. We each have to be our own advocates for our health! Since we have horrid memories the Journal helps sort things out. If it weren't for my journal and being able to look back to last year when I was having such a hard time I may not have pushed for the MRI... Keep a journal... it is so important.
Thank You for always being one of my cheerleaders. Without you and your words I would have felt so utterly alone in my Journey... Petunia You are a blessing to me!!!
HUGGS, Belinda
Petunia Girl said:
Wow, you have come such a long way, Belinda! And have learned so much in that time! Your post has actually brought tears to my eyes, and that's quite an accomplishment due to my dry eyes! I am truly happy that now you FINALLY do know the full extent of your illness and that your actions will save your life. (Ok, tears again.)
And thank you for suggesting the journal. I've always been a journal hater but your experience has brought home to me the reason as to why we need those journals.
My blessings and best to you, Belinda. You sure deserve all of the good things in life now that you can control and reduce some of the dysfunctional elements. (I hate to use the term 'bad things" for your illness because that journey has helped you to talk to fellow sufferers and to uncover your full health story.)
Your friend,
Petunia
Ibsain(Belinda) said:
Yes I agree the Dr. is always the best way to diagnoses... I know I used to always tell our members a Rheumatologist was the one to see but now... I would recommend they see both... or at least request their GP to order a brain MRI to rule out MS... I also must insist that everyone write in a journal your symptoms when they start how they effect you and how long. Never think one thing is not related... so write down all the things going on... VERY VERY important for the Dr. to get a bigger picture.
I was convinced I was dying when I started my journey... and I actually was... slowly dying... untreated MS is fatal. My journey was frustrating... but I noticed that when I would "flare" they were the same symptoms as before with a few extra things each time and they were getting worse each episode...and I noticed that STRESS was the beginning of an exacerbation. It took me years to see all this... Now I look back and think to myself... WOW. BUT I am so lucky at the same time... because my MS could be worse. Then we add the Fibro to that and .... well we got one hot mess that I am now beginning to truly get a grip on.
How are you doing, Belinda?. It's been a few weeks since we connected and I would love to hear of your current journey.
I think that all of your advice is EXCELLENT. I started a journal then forgot about it! Like a squirrel burying a nut then forgetting where he put it! So I'll go back to it doay and update it.
I think it's really sad as to how routine it is that our symptoms are ignored. Important symptoms! Life altering symptoms! I am not saying that doctors need to know everything...but they should be open minded enough to search for an answer or else refer you to someone else who might know. I don't think that's too much to ask.
Nothing drives me crazier than to have a doctor slap on a simple and stupid diagnosis - like a back sprain - that doesn't relate to the illness. You are a very string-willed and intelligent young woman who was smart to push and push for the right diagnosis. But why did it take so long to finally get the right diagnosis? At any rate, I'm glad that you finally got ananswer. You did such a good job of pushing for the answer .. Really, you are to be looked up to because I know that I can get lazy and just accept a diagnosis at its face value. Except sometimes it just doesn't fit the symptoms at all.
My eyesight is getting fuzzier as I am tired, so I'll end here with a resounding, "Good job!!!!"
Petunia...I posted an update this morning in What's new with you...header What's Next? LOL If you will place your Journal in a place you will see it every day...like where you keep your meds. then you will see it and be reminded to write in it. as for why it took so long to get the right diagnoses... well my journey started in 2012...actually I was having MS symptoms years before that but they would pass and I would think nothing of it... so fast forward to a fall at work... and my knees and elbows killing me... I go to a Dr... actually an internist... and got nowhere...eventually it was knees elbows and hips... then my whole body... I went to several Drs. and finally in 2014 pain in my butt and hips that I could not ignore so I began going to Dr after Dr. and then seen my Rhumy... I had bursitis in elbows, shoulders, knees and hips along with Bi-lateral sacroiliitis and Fibromyalgia. I thought it was the end of the story take the meds and get those injections ( I am now at over 40 of those) and I will be better...NOPE... I struggled to get back to work that summer and went back in sept of 2014. I made it a couple of months before having problems again... so more injections and ...in dec. my SI joints went stupid again... Buy Feb. my entire upper back was contracted and then the pain everywhere... I went out again.. More injections and through all that I went through my journal... back to last year... I compared.. it was all the same only worse and some new things too.. I had tremors and they were through my whole body... but I could see them in my hands ... THEN I seen it in my head....Oh and when I would have a " Relapse" it would start with a twitch above my left eye ... last year that twitch lasted over a month and wound up below my eye in my face... and I had face numbness... well this year all that and I was biting the inside of my face and my tounge... I believe you had posted something about that at one time. I started insisting ( after goggling each symptom I have separately and seeing MS) I be tested for MS. It took a few months before my GP finally got my referral in... I had already seen a normal Neuro and had the Brain MRI when I got the call telling me I had an appointment with the MS specialist...that was 2 days from that day... I had just spoke to the nutt job Nuero who did that MRI and he told me that nothing was wrong all normal aging. and to stop smoking...The next day I picked up the results and it was not normal... so the next day I went in to the MS Specialist and I was sent for another MRI looking for demyelinating disease...they called the next day I was in the next week to see THE main SPECIALIST. sent for blood work and they checked my eyes... really the diagnoses came quickly once I was in with the Specialist...I was diagnosed in less than a month....In reality I was happy with the Fibro diagnoses and felt like walking on sunshine... until it hit again...Actually the bursitis is an endless thing... a constant but rheumy says it is from the fibro...I believe it is from the fall... I can only argue one thing at a time... it is now time to find the exact cause of all my bursitis... that is my next battle.
It was just getting someone to send me for an MRI that was the hard part... That about sums it all up in a nutshell. It was a roller coaster ride full of ups and downs... when I was good I was good but when I would flare it was bad... Oh and I noticed it was all brought on by stress... anxiety...everytime I relapsed... I know that stress makes fibro worse but I just had a feeling in my gut... and since I had been tested for everything else that left MS...
Petunia.... You are the biggest support in this support group... you have great posts and I enjoy reading them... I hope you are feeling better. I am in a fibro flare per my Rheumy... Everyday it is something... never a dull moment.
Petunia Girl said:
How are you doing, Belinda?. It's been a few weeks since we connected and I would love to hear of your current journey.
I think that all of your advice is EXCELLENT. I started a journal then forgot about it! Like a squirrel burying a nut then forgetting where he put it! So I'll go back to it doay and update it.
I think it's really sad as to how routine it is that our symptoms are ignored. Important symptoms! Life altering symptoms! I am not saying that doctors need to know everything...but they should be open minded enough to search for an answer or else refer you to someone else who might know. I don't think that's too much to ask.
Nothing drives me crazier than to have a doctor slap on a simple and stupid diagnosis - like a back sprain - that doesn't relate to the illness. You are a very string-willed and intelligent young woman who was smart to push and push for the right diagnosis. But why did it take so long to finally get the right diagnosis? At any rate, I'm glad that you finally got ananswer. You did such a good job of pushing for the answer .. Really, you are to be looked up to because I know that I can get lazy and just accept a diagnosis at its face value. Except sometimes it just doesn't fit the symptoms at all.
My eyesight is getting fuzzier as I am tired, so I'll end here with a resounding, "Good job!!!!"