I am really worried.I have been having much more serious issues lately. MyDr. agrees that it sounds like MS or ALS. She said they are overlapping conditions that are common in Fibro. I am scared. I would really like to have someone to talk to on this subject. My neuro appt. is July 17th...Long time to wait and I am really freaked.
Hi Jacqui,
Yes, those are frightening possibilities. BUT fibro and MS do have a lot of overlapping symptoms. A lot. I don't know what your symptoms are but unless they are markedly different than those of fibro, I think it might be a good idea to not put the cart in front of the horse, and presume that it is fibro until told otherwise. I hesitate to even suggest that you read up on the two illnesses or talk to people who have them because if you don't have them, YOU COULD END UP SCARING YOURSELF TO DEATH. And I truly feel badly for you because I've been there too. From what little I've read, MS can be pretty well managed in some cases, and some people can still work even while having it. That's not always the case but it seems to have new medicines available that make it more manageable for some. ALS...let's not go there.
In my opinion, fibro seems to be progressive; that is, it seems to get worse over time in many cases. Perhaps you're suffering from more fibro symptoms now than you had initially. It's a possibility.
You can talk to me, if you need to. Unfortunately, lately, I've been in a lot of pain so I'm not doing chat. But if you want to shoot an email my way, please friend me and send it to me, with URGENT in the subject line. Again, the reason is because I've been in bucketloads of pain lately and am not answering much email until and unless I feel better. (I'll continue to try to answer as many people as I can in discussions, however.)
Again, please, please try not to consider MS or ALS as serious possibilities right now, until and unless your neurologist thinks there is that possibility. Fibro is a natural at mimicking so many autoimmune illnesses, of which MS is one.
Hugs and prayers,
Painful Petunia
Hi Jacqui,
Petunia is right. Fibro has so many overlapping symtoms it can drive you crazy. Don't borrow trouble as my Mom would say. You will need much more testing to diagnose MS or ALS. I had a brain MRI just last month and was told I have white spots in my brain but no mention of MS even though those are signs. It could just be my brain is getting old :) and those are my arteries hardening. Pleasant thought huh? LOL. Just wait and try not to stress too much and read too much. It can drive you crazy. Eat healthy, get some exercise if you can and think positive thoughts. Remember we are here if you need to vent..
Sending warm thoughts,
Eileen
I know what you are going through, just yesterday, I had to drown my sorrows in a pint of ice cream because I was told that my MRI has something on my left lobe of brain that for now is in normal parameters for me, but will need to be watched in future and will be used a reference point, but it is all about waiting and watching. They did not say exactly what they may see or be watching for but MS has been mentioned quietly from time to time and my symptoms are worsening. I am scared too. FM does represent and share many same or similar symptoms as MS and ALS so that just makes not knowing harder. I am glad that you have a neuro apt coming up. Hopefully, it will lead to answers that will ease your fear. I will tell you what I had to tell myself, concentrate on today and what you know for today. If we don't do that, the anxiety of the unknown and "what if" s of tomorrow can become so consuming and make us feel worse, today. Please feel free to talk to me. I totally understand.
And again, everyone is correct, the symptoms are very very overlapping. I have two friends with MS and one of them even suffers increases in pain and symptomology at similar times that I do, because of same triggering factors! Try not to cause yourself more anxiety...FM is taxing enough.
I'll keep you in my prayers. Hang in there, hon. There isn't a step you have to take from here on out that has to be alone no matter what the outcome. Some people say "One day at a time" but sometimes you need "One moment at a time". We are here for you. I'm here. Keep us posted. Sending you much love.
Hi
I wore both of these labels at different times and spent ages over the computer trying to work it out.My problem was that I had and have a lot of weakness, can’t lift my body up from the floor, can’t lift my legs up from a horizontal position and so on. I had the muscle biopsy and the nerve biopsy that were negative so ended up in the fibromyalgia bucket but spent overtwo years not knowing.
I have a friend who has MS and quite frankly she is more capable than I am, and the only reason that they decided that I didn’t have motor neurone disease was because I wasn’t deteriorating fast enough!!!
Stand firm and keep chatting with folk here and you will get through this. Take Care Barb
I am too, so glad that you have an appointment with your Neuro. Just remember to jot down any questions you might have and that you’re thinking about now so that you have them when you go in. I know that always has helped me too. Like you, I have been experiencing a lot of different symptoms and the pain seems to be getting so much worse and they’re having a difficult time figuring it out. It must be the curse of Fibro that they like to tend to drop it into that bucket sometimes and so we have to be our own advocate so that it gets figured out. Just keep your chin up even though I know it’s hard sometimes and know that we are all here for you and ready to help you when you need it. I’m available too, if you want to message me, I am happy to talk to you anytime. Take care and I hope everything goes well for you.
Lois
Jacqui,
So sorry you have these two diagnoses hanging over your head. I would try to concentrate on what you know for sure as stress will not do your symptoms any good. Try to enjoy what you ate able to every day because none of us know what tomorrow will bring. I choose to spend time with my family doing things I like. I refuse to let FM or CF rule my life. I also have a “what if” to deal with right now, but I refuse to stop living my life for a month or so until I know for sure. Please continue to use this forum to reach out for support. We all have to help each other get through our ups and downs in life. We can all pray for ourselves and our fellow forum members. It makes me feel better just knowing that I can reach out at any time and there are people who understand and can lift my spirits up. Prayer can lift us all up as well. Just pray for your fear and anxiety to be lifted from you and you will begin to feel a weight lifted off of you. I will do the same and I will also pray for the same for you and all of our forum members. Feel better and give your worries to God.
Take care,
Connie
What scared me into seeing my Dr. again was visible muscle spasms. They started in just one spot in my right leg.Looked like a baby kicking from beneath my skin. Then they would shoot all the way down that leg. I have had the issues with my feet for a long time...severre pain, pins and needles feeling, electric shock...but now there is a vibration and it started moving through my right leg. Then one day my leg just collapsed for no reason. The visible spasms(looks like when u can see a baby kick) started in the other leg...then my arm, then my neck. I have been having severe vertigo...way more often than I used to.The vibration was so bad it woke me from sleep one morning because my brain was rattling. My leg collapsed a second time...had a pretty good fall. So, those are the reasons I went in. The first Dr told me it was depression!!! I am actually a very happy person. And then he redirected me to my female Dr!!! At least she listened. Frustration city.
So sorry.
Dear Jacqui,
I'm sure you are rattled by this, my first thought is that Fibro, MS, Lyme, and Lupus are known as 'The great imitators', they are so like so many other things.
http://en.wikipedia.org/wiki/The_great_imitator
I will also tell you that my best friend was diagnosed with MS nearly 2 decades ago, and with her weekly shot still works, and is a very active grandmother. I know it's hard not to freak out yet, I know these waits are just HELL, and that it's going to be difficult to be strong, but I know you will be. I know that by your photo, I know that as a mother.
I'm glad you posted, please come to us anytime. I wish you the best, will keep you in my prayers.
Wishing you well,
SK
I also wanted to tell you that there are wrist bands that may help you with your vertigo.
http://www.shopping.com/wrist-bands-for-dizziness/products
Like me, my grandson suffers from car sickness, I keep wrist bands in the car for him. They really help!
Hi Jacqui. I totally agree with Petunia. I'm just sorry you have to wait so long for your appt.
My rheumy sent me to neuro several years ago to rule out MS. I was having similar symptoms you describe with the weird electrical thing in the legs and in my arms. I had fallen once too. The neuro did real simple tests, nothing to be afraid of. My tests all came back negative. No MS. It was all fibro. And the strange part is, soon after the MS being ruled out, the symptoms improved drastically. Now I have the pins and needles prickliness in my feet, not in my hands, but the rest of the symptoms just went away. Don't ask me why. One of the strange side effects of anxiety and fibro I guess.
I think you have a great doc to send you to a specialist. She wants to cover all the bases. I hope your tests come back good and I hope you can get through the next 2+ months without making yourself sicker with worry.
Hi Jacqui, I am sorry to hear this and will pray it turns out not to be the case. A while back my PCP scared the hell out of me. She told me she thought I had MS and sent me to my Neurologist for a work up. He was so pissed at her he called her right in front of me told her that " you don’t tell patients this, without medical tests to back it up" He rain a battery of tests, brain scan, Emg, and all sorts of other tests. Much to my relief they all came back negative except for some right sided rediculopathy caused by nerve damage from my neck. So you see, Petunia is right wait and see what the tests show. However, this does not mean that you will not be worried and stressed over it, it’s natural to be afraid of the unknown. I know I certainly was. I think the hardest part about having Fibro is we do not know what is Fibro and what other symptoms we have may be unrelated to our Fibro. That’s where the worry comes in for me. Sending Hugs and prayers your way! Leanne