I was diagnosed about 3 yrs ago with fibromyalgia. I never really felt I matched the symptoms, but my doctor did blood work, and a general exam and didn't find any other conclusion to my issues. Today, I've been having some really scary symptoms and I think whatever I have is getting worse. Three days ago I began to get numb sensations on parts of my head. During that time I was also experiencing numb and tingling feet and hands. Now I was in a store with my sister walking around and I felt like I couldn't walk properly. I was having to swing my legs forward to get them to go. I began leaning on the cart just to take off some of the pressure, but eventually I had to sit down to take a break. I also get this tightness and aching in my shoulders and chest, along with these surges of electrical type pains down my arms and legs. For a long time I would have problems with my hands too. Even when I was a kid I couldn't write for a long period of time because my hands would just fall asleep at any given time. The fatigue is horrible! I try to get things done, but I pay for it later because I've just wore myself out with simple tasks. My vision isn't that great either. I get dimming in both eyes where it feels like I'm looking through sunglasses when I'm not. My right eye gets blurry and foggy all the time too. I have never been to a neurologist and I'm wondering if this is something that I should be concerned about? The reason I ask is because last time I tried to figure out what was wrong with me I was put on this specialist "rollercoast" where one doc would shuffle me off to the other, finding zero answers. Another reason that I've put it off is because I can't tolerate MRI machines from severe claustrophobia.
I have 2 disabled children and I can't afford to be in the hospital or incapacitated for an extended period of time, but I feel like my symptoms are becoming more and more debilitating.
Hi Bella. I read your post and decided to respond to you because you sound so scared. And, something you wrote worried me. You said you have NEVER been to a Neurologist?? Who diagnosed your Fibro? Im afraid to ask. Sweetie, your symtoms do match MS symtoms to a certain extent, and they definately sound Neurological. There are so many things which are similar to MS, that you cant automatically assume that you have it, but you really need to see a Neuro. And, possibly an opthamologist. You sound from your eye symtoms like you have optical neuritis..not a huge deal, but it needs to be treated (usually with steroids, and always at home, or else outpatient). Not something which will screw you up for any period of time (the tests I mean). IN fact, none of my MS tests had me laid out for more than a few hours, the spinal tap had me flat on my back for an afternoon, but at least I was at home. I can relate to you being afraid of having to be away from your kids....
However, if you dont get this under control, you are going to wind up in the hosptial and at that point, not having had any tests done, your going to be there for a few days. So, you need to look into this now, while you still can get help from your sister, or whomever to take you to the doctors on an outpatient visit. I dont know your insurance situation but you mentioned you have seen specialists before. My suggestion to you is to find a Neuro, one who actually does have MS patients, and get into see him or her asap. Start the ball rolling, this ball can take a very long time to get the answers, so the sooner you start the more problems you can ward off in the future. You might be experiencing an undiagnosed relapse as we speak; wouldnt it be nice to be put on some meds to at least help with the symtoms??
good luck, keep us posted.
Nikki
Thanks so much for replying so quickly!! I was diagnosed by an internist and rheumy 3 yrs ago. Since that time I've tried really hard to just go on with my life, but something just doesn't seem right. The reason the dr concluded FMS was because I was fatigued all the time, achie on certain trigger points, and I was also having flu-like symptoms. He ruled out other disorders, but figured this might be it. However, I can deal with pain, that's not the problem, but it's the loss of feeling, coordination, and strength that has bothered me. I used to walk all the time, now I get tired doing basic things. The head numbness is a new thing. It started on the top of my head and later diminished with tingling just yesterday. I really have nobody to help me with the kids. My youngest is classically autistic and nobody seems to know how to care for him, nor do they want to. When I try to tell my husband how I'm feeling he tells me it's all in my head (HELLO, yes, i'm feeling it there too!!). About 6 months ago I was in to see my doctor because my left hand was just non-functional. She wanted me to go for an EMG because she suspected I had carpal tunnel. I never went because so many of my friends scared me saying it was a horrible test. Ok, so I chickened out and I know I should have had it done, but I really don't want them to find anything, if you know what I mean?..lol Not that I can't handle having something wrong with me, it's just that I have a huge responsibility on my shoulders right now and nobody to take over if i'm sick.
I agree though that if I can mimimize the damage, and feel better in the long run it is totally worth pursueing answers. Now I just have to find a doctor that knows what he's doing. I know this isn't a one shot deal, and it takes time for them to find out what's wrong with me, but I just hope it can be done with minimal trips to the doctor, and nothing that would land me in the hospital for a long period of time.
On a side note when I gave birth to both of my children I had epidurals each time. I had a really bad reaction where I was having seizure like muscle spasms going from the spine to my head. It was horrendous pain and each time I landed in an ambulance. All they did was send me home with muscle relaxants, but then it took weeks before they went away. Just metioned that because I don't know if there's a relation or not.
Thanks so much for your advice. I will try to get into the Neuro soon.
gee Bella, I almost do not know what to say. You are dealing with so much. I too, have a husband who tells me "its all in your head" alittle too often. Yup, it is, its called MS and it affects my brain. He doesnt laugh...
Anyway, I have no idea if youre previous episodes have anything to do with this, but my gut tells me that until you see a Neuro, a good one, get references, and make sure this one is up and up on MS and other neurological diseases. You dont want a Neuro who specializes in Parkinsons disease.you need a good general Neuro, or even an MS one, if you feel that you want to rule out or confirm MS..but, until you see someone, youre not going to know what to do; and youll probalby continue to decline with symtoms. I had that test done for carpal- it was done in my Neuro's office. It took about 10 minutes and it hurt less than a bee sting. It was over in a matter of seconds, the pain....each time he "stuck" me, I felt something, and the muscle jerked, but that was it...youve had children, this will be nothing!!
For the record, my best friend also has an autistic child. I spend alot of time around both of them, you have my empathy. These children need alot of special attention; however, they are some of the most loving kids on the planet.
Good luck to you, if there is anything we can do (I can do) or say, please ask...Ill be waiting to hear more from you.
Nikki
That's really neat that you have someone in your world with Autism. I have always tried to spread awareness, but some people are not always receptive. Many confuse it with mental retardation, but my 10 yr old is on the honor roll and is a gifted student, and my younger one who can barely talk - can do complicated math, and does very well in other areas. It's just hard with the everyday stuff. My other son is 7 yrs old and we are still working on potty training still.
Anyways, I really appreciate the concern and advice. I hope things are going ok for you. I'm 39 and I feel like I'm 90.. lol Ahhh, gone are the days when you were fearless and faced each morning with energy and excitement. Now I'm just happy to get out of bed without hitting the floor. While the kids are in school tomorrow I'll be surfing around for the Neuro. I don't drive , so going far out to a top-notch doc is kinda hard. Whatever is wrong with me, I'll just take it one step at a time. My schedule is full most days so no time for self pity. However, I just get angry at myself that I can't accomplish as much as I want to in a day. My house has never been so disorganized. I used to be the biggest neat freak! It's clean, but cluttered and lifting things and moving stuff around just isn't possible.
Well, I'll keep you posted, and Thanks again for being so helpful!
Head numbness 
When I try to tell my husband how I'm feeling he tells me it's all in my head (HELLO, yes, i'm feeling it there too!!). About 6 months ago I was in to see my doctor because my left hand was just non-functional. She wanted me to go for an EMG because she suspected I had carpal tunnel. I never went because so many of my friends scared me saying it was a horrible test. Ok, so I chickened out and I know I should have had it done, but I really don't want them to find anything, if you know what I mean?..lol Not that I can't handle having something wrong with me, it's just that I have a huge responsibility on my shoulders right now and nobody to take over if i'm sick. 
While the kids are in school tomorrow I'll be surfing around for the Neuro. I don't drive , so going far out to a top-notch doc is kinda hard. Whatever is wrong with me, I'll just take it one step at a time. My schedule is full most days so no time for self pity. However, I just get angry at myself that I can't accomplish as much as I want to in a day. My house has never been so disorganized. I used to be the biggest neat freak! It's clean, but cluttered and lifting things and moving stuff around just isn't possible. 
Linear Mode
