can anyone help?

[catch21]

Hi

I need some advise please. I have been diagnosed with having Fibromyalgia Syndrome and chronice Fatigue Syndrome about 2 years ago as i ticked all the right boxes. i am concerned as over the past year i have a number of symptoms that I cannot connect to FMS, but sounds more like MS. I have to use crutches o kepp my balance as i have have had several falls and for longer walks I use a wheelchair as my legs are unsteady and i haven't got the strength to support myself with the walking aids. I am a 45 year old woman and I suppose what I wanted to know is, had anyone else been diagnosed with FMS before MS? If so, how did the MS get diagnosed and what should i be asking for from my doctor to rule it out?
I would appreciate any help or advice on the matter
Anticipated thanks!

[catch21]

Wow, thanks for such a great response, I can relate to so many of you guys! The symptoms that I had for the first 4years did relate to FMS and CFS but in the past 18mths the problem of pain and mobility has become worse which has made me look into the matter more and I couldn't believe how similar the symptoms are between FMS and MS! I am going back to be refered to a specialist who's field is MS and with all the information and great advice, I will be assertive and ensure that I ask the right questions and get answers! I just feel in my heart that this is more than FMS as I can hardly walk and use my wheelchair more frequently than i want to. I sometimes think it's phycological, but when I am having a really bad day, I know that even I can't have such a vivid imagination, if I did i would be a writer!
I would just like to say thanks to you all for such strong and heart warming support, and i promise to keep you posted of my progress,
Bless you all
Catch21

[Deb61]

I have been recently diagnosed with MS.  Prior to that, I've been diagnosed with fibromyalgia, migraines, high blood pressure, arthritis, and thyroid disorder.  My first neuro dismissed me and didn't want to consider an MRI--even when I told him that I had a sister that was recently diagnosed.  

My second neuro ran a bunch of blood tests, spinal tap, and an MRI and that's where lesions were discovered in my brain.  

I have a lot of symptoms you may contribute to FMS and I also have the balance problems that your were talking about.  My neuro told me that I was diagnosed with FMS because no one else could figure out what was going on with me.  I know this is contraversial, but that is what he said.

I have no idea about this point that my neuro discussed.  But I do know that my symptoms seem to fit most categories of autoimmunity.  At one point, my doctor thought that I even had lupus!  It's really confusing for doctors, and it's thousand percent more confusing for the person suffering from the disease.  

I will say that what you are experiencing sounds like what I am experiencing now.  I have taken a really bad fall once and couldn't walk for a couple of months.  I didn't know what to think about it at the time.  When my sister took her fall, her injury to her foot was permanent.  She's had foot drop for the last year and a half.  

My suggestion is to find a really good MS specialist.  Make sure you start journaling and writing down all symptoms that seem strange (even if you think they're related to your fibro).  When you see the neuro, be sure to tell him everything so that he has a clear picture and can start putting the pieces of the puzzle together.  

I wish you the very best!

Deb

[Amyloo]

I also have fibromyalgia, was diagnosed about three years ago.  Just diagnosed with MS in December.  I too am 45, and I too have had difficulty walking, using a wheelchair for a while. I didn't read the above posts (too tired today) but I'm sure it's good advice.  God bless you, Amy

[Heather3418]

You got some excellent advice from Rena.  Absolutely excellent.

I have been diagnosed with MS for 13 years and Fibro also, just a few years.  I am sure that the Fibro was present LONG before I was diagnosed with MS.  The two disorders have so many things in common and it's hard for doctor's to try and sort it all out.  But with MRI of the brain and spinal and sometimes a Lumbar Puncture, MS can be RULED in.  The physical exam will also tell your doctor alot, as Rena describes so perfectly.

If you follow Rena's advice, it can help you sort out the details of what is going on with your body and if you indeed have both disorders.  This is more common in people with MS, than was previously thought.  I have just been put on Lyrica in the past couple of days in hopes of helping with my nerve pain.  Doesn't do much for the spasms from MS, but hey, I am willing to give it a try.

I am glad that you posted and look forward to more posts from you.  Welcome to the MS Forum.

Heather  

[Rena705]

Hello catch and Welcome to our Forum!  I sounds as though you are having some significant difficulties and I hope that we are able to help you!  We are not able to make any diagnosis as we are not physician's and that must be made clear from the beginning.  We will however, try to assist you in finding the right path toward a diagnosis for your symptoms.

We do have a few people in our forum that have been diagnosed with both Fibromyalgia and MS and I am sure that they will be along to try to help as well.  I personally have been diagnosed with MS in 1993 and re-diagnosed in 2007.  However, I am having a lot of problems which may relate to Fibromyalgia and I will be seeing a Rheumatologist in the near future to discern what the problem is.

The first thing I need to ask is if you have been to see a Neurologist?  If you are concerned with the possibility of MS and you don't have a Neurologist, you have to tell your doctor that if there is a possibility that you may have MS you need to see an MS Specialist rather than a Neurologist.

Why you ask?  While a neurologist can deal with many neurological diseases, if you are suspected of having MS you NEED to be treated by an MS Specialist.

An MS Specialist is trained to study your MRI and has the experience to discern differences in your MRI that a Neurologist or Radiologist is not.  This ensures that you will have the proper results at the start of what could be a long road to a diagnosis.

When you go to see your MS Specialist, the first thing that he/she will want is a full history.  It would be helpful to both you, the patient and the doctor if you were to make up a timeline of your symptoms ahead of time.  This will give the doctor a better picture of your symptoms and will take the pressure off of you to remember everything in a stressful situation.  

The next thing the Specialist will do is a full in-office Neurological Exam.  It is imperative that this exam is done and if it is not done it is up to you to be pro-active and INSIST that this exam is performed.  

This is a head to toe exam that may include requests for you to walk across the floor heel to toe, you will be asked to touch your finger to the doctors finger suspended in front of you and then to your nose with your eyes closed, you will be asked to rub your heel down your opposite shin...nothing too scary, they just seem a little strange.  A good exam will probably take 30 minutes or more.  The results of this examination will tell your Specialist about your Mental Status, Cranial Nerves, Motor Skills, Coordination and Gait, Reflexes and Senses.  This in office examination is crucial to the possibility of a diagnosis of MS.

Ok, so now you have had an MRI and an in-office examination and the results are inconclusive...What next?

Your MS Specialist may suggest a Lumbar Puncture.  It sounds scarier than it is and most people have no difficulty with it at all.

During the Lumbar Puncture the MS Specialist will extract a small amount of spinal fluid from your lower back and it will be studied for the presence of Oligoclonal Banding which is present with MS.
If there are no Oligoclonal Banding a positive IgG index will suffice as a positive LP.  The fluid will also be studied for a myriad of other diseases as well.

If MS is highly suspected but there is not enough evidence for a diagnosis then Evoked Potential testing is brought into play.  Evoked Potential testing measures the time it takes for a nerve to respond to stimulation.  There are three types of tests used to obtain evoked potentials, Visual evoked, Auditory brain stem evoked and Somatosensory.  Each response is recorded from brain waves by using electrodes taped to the head.  Visually evoked response is the most commonly used to diagnose MS.

These are the tests that are used to try to discern whether a diagnosis of MS can be made or not.  It is very important to remember that a good MS Specialist that suspects MS but can find no indication, follow up with the patient at 3 to 6 month intervals, for years, if necessary, to gain further information.

I, too am 45 years old and I am having difficulty walking with a lot of pain in my legs, a lack of balance as well as several other bothersome symptoms that they can't seem to find any cause for.  I wanted to ensure that you have the correct path that you should follow should you take your concerns to a physician.

I will forward you post to "Heather" who is one of our members dealing with both Fibro and MS and I hope that she will be able to help you further.

Please remember that we are here to assist you 24/7 and the road to a diagnosis can be a long a painful one.  We are here to support you all of the way!

Lots of Hugs,

Rena