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Avatar universal

Sound like MS?

I was DX'd with Fibromyalgia 6yrs ago.......I have an appt with a Neurologist on the 9th...due to my dizziness/off balance problem.....it will last 24/7 for a week then disappear for months.

10yrs ago I had many many MS symptoms but never got them checked out....here is a list:
Past symptoms -started 10yrs ago-lasted about a year
Tingling & creepy crawlers - arms/hands/feet/scalp
Numbness like - inner thigh/fingers/toes/lip/cheek/scalp
Twitching in various parts of body (off and on)
Off Balance
Eyes - water in the shower look like falling fire balls (off and on, not all the time)
Feeling out of it, spacey
Shakey hands
Red hands/feet - hands have blood pools and they burn/hurt/ache when humidity is
high  **Winter they are still real red BUT hands and feet are cold like ice**
Burning Mouth Syndrome - right side of tongue burns/hurts - comes and goes -
Dentists and ENT check up nothing there.
Memory problems - head becomes cloudy - this is always accompinied with the
Off balance feeling
Nausea -can last for weeks, then disappear for months
Fatigue - can sleep 6-8-11 hrs and wake up exhausted
                  in the beginning couldn't stay up more than 5 minutes
Collar bone/elbows - hurt to the touch (comes and goes)
Teeth Grinding
Electric shock feelings in my spine and head
Sorry it is sooo long.........right now I just experience the dizziness, last night during my shower instead of seeing water coming out I saw shooting stars, usually its fireballs(that one hasn't happened in a long time), also my left thigh will feel almost numb.

Any Ideas?
13 Responses
Avatar universal
Isn't this frustraiting????  This is the first day I have been on this sight and have posted a few questions.  I am amazed that so many people experience the same symptoms, yet so many of us have no idea what is really wrong.  I have an appointment with a neurologist on the 16th and I hope I can get some answers. The only answers I have received so far tell me what I do not have.

Good luck to you!!!!!

Avatar universal
Yes this is very frustrating!!!!!!!!!  How long have you been dealing with this?

I got my fibro dx 6yrs ago, but I still want to rule out MS...have had way to many symptoms.  I would like a MRI .... but I would like to get my dizziness under control and my pain.  (sadly I also have Osteoarthritis in my spine) Im 39!!!!!  But I only weigh 108 so its not due to my weight.

Hopefully we can find out whats going on with us.

Good luck on the 16th!
Avatar universal
While talking with my primary physician a few months ago, I realized the exact day this all started in 2001, and since then I have developed new and numerous symptoms.  In the summer 2001 I was a healthy, happy, active 40 year old woman...loved running, weight training, and cycling.  I was in the best shape of my life.  I ran 6 days a week and was also training for a half marathon.  One day I ran seven miles but I felt “off” and it was oddly difficult for me.  The next day I was feeling overwhelmed and exhausted and as it turned out, I never ran again.  After a few weeks of total exhaustion, I went to my doctor’s office (we have moved to a new state since then) and a Physician’s Assistant put me on an antidepressant, stating that women my age have a lot of changes happening in their bodies and this was “normal.”

I was just in the ER last week because I could barely walk (my feet and legs felt like lead weights), my hands were not working, and I was vomiting.  The ER doctor was a condescending prig and said to me, "So, you're feeling a little run down?  We'll give you something to make you feel better."  As he walked away I asked what he was prescribing (but I already knew) and with his back to me he said, "An antidepressant."  I told him I wasn't depressed and he said, "Sounds like it to me," as he walked away.

Also, my primary physician had taken me off antidepressants because they did not help and she agrees that I don't need them because I am not depressed.

My fear is that if I do not get the proper diagnosis and on the right treatment there could be unnecessary damage happening to my body.  I long to know what is happening to me so it can be corrected to at least treated!

I had had an MRI in May, and I did speak with a neurologist while I was at the hospital last week, and he stated that there is no indication of MS, there were no tests that could be performed at the hospital to help with a diagnosis, and that I had to tough it out for the next few weeks until my neurologist appointment, where all the proper tests could be performed.  After he said all of that I asked him if he had read the list of symptoms I had brought with me (I had a prepared list for my upcoming visit on the 16th) and he said, "What list?"  As it turned out the list was in my chart but he had not bothered to to look at it.

How can so many in the medical community have so little consideration for the very people they are supposed to be helping?  I am so perplexed by this.  

In your case, why wasn't MS ruled out first before diagnosing Fibromyalgia.  I am new to this but that sounds backwards.  Does your dizziness prevent you from dirivng?  I mayself am afraid to get behind the wheel of a car.

Also, when you wake up (after 1 or 10 hours of sleep) does your brain feel like it is still asleep?  This is so hard for me to explain to my husband.

Hopefully you will find some answers and the right direction on the 9th!!!!

I am glad I found this website and so many others who understand what this is like to live with!  We are not crazy!!!!

Thanks for listening, and please feel free to "vent" also.  

Avatar universal
I think the Fibro diagnosis was made because at that time I was in a lot of hip and back pain, had pain other places too.  The neurological was a few years prior to this......the only thing Neurological that was lingering was the dizziness.

NO!  I do not drive when I get dizzy........I put off all errands until it clears up, if it means I have to wait a week to do shopping then thats what I do, OR my husband will go for me.  I can't even be in a store when this hits.

My brain does get like that, I have trouble paying attention too......I cannot repeat back exactly what my husband has said to me, I get it all wrong.  He HATES that and thinks I do it on purpose.

I have a "LIST" too, but some people say not to show it to your doctor that he will NOT read it, and a Dr on webmd says for me to take two copies and have the Doctor read it, so I don't know what to do there.

Hope you had a nice 4th, me and the kids lit fireworks and then catched football.  It was a real nice day :)
Avatar universal
One of my favorite human beings is Thomas Alva Edison.  I admire his tenacious nature.  He is attributed with saying, "I have not failed. I've just found 10,000 ways that won't work." -Thomas A. Edison

All of us continuing down this weird diagnosis adventure could easily change that quote to say, "I have been diagnosed. Unfortunately all 10,000 diagnoses have been incorrect." - Want to Feel Well (me)

My nature is to always find a way to put laughter into a situation.  I carry a clown nose in my purse and in my car so when the situation arises or I feel the need I can put on the round red nose.  I also have a set of “bad” teeth I can use, called “Billy Bob Teef” and they really get a lot of laughs.  

Find a way to laugh…every day.  

Avatar universal
Your last posting must have come in at the same time I last posted, so I had not read yours to respond to it.  

Think about it…the "list" is very important because without it the doctor might miss something.  In my opinion, if a doctor is not willing to read a list of your symptoms then he/she is not there to help you.  The information packet I received from the neurologist’s office encouraged lists and notes.  In my list of symptoms I inserted "An odd desire to be a lemur (kidding…just wondering if you were still reading)."  My husband read it and commented that it might work to keep the doctor on his toes.

I have also thought about adding a picture of myself from a few years ago.  I do not look as young as I did only 3 years ago.  Whatever is happening to my body is affecting many aspects of my life.

The driving question was only to reinforce how our daily lives are affected.  You are a mom who might need to drive you child to the ER!  People like us need to be taken seriously!!!

My mom was diagnosed with cancer two years ago.  The physician who cared for her was the best of the best.  I suggested to him that he teach a class to medical students on proper doctor-patient interaction.  That doctor would not leave the room until he was satisfied the patient and family understood everything.  If only all doctors had his philosophy!  My mom is doing very well and cancer free.

Happy 4th!!!
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