please help when no one else can

[chefaid90]

I'm 39 yrs old and have been having problems now for 9 yrs with no one being able to tell me what is wrong. It started out as fatigue and lower back pain, they sent me to physical therapy cause my lower back muscles were in a constant pulled tight, that didnt help at all, the back muscle tightness has grown to encompass most of my back. Now I have been having problems with my legs going totally numb and making me fall. 3 episodes in the past 5 months. I have been also fighting with memory problems for most of the past 9 years, cant seem to remember appt dates or times, things that I was going to do, it gets so bad that I have an alarm on my phone for everything from calling to make appts to all appts. Its like my brain is in a fog. I constantly deal with pin and needles feeling in my arms and feet, it makes it hard to drive cause my hands will go numb and get the pins and needles feeling in them and it hurts. I've had doctors tell me its all in my head to fibromyalgia (which no one ever did any tests for) to they arent sure. I used to be able to walk all over the place with no problems now I cant walk through the grocery store without being in pain and exhausted. A friend of mine suggested that maybe it was MS as she has it and some of my symptoms mirror hers. I also deal with Migranes weekly. I have also been sent to pain management classes when the muscle relaxers didnt help either and I finally said no more pain meds or muscle relaxers as they werent helping at all. I also have had 3 periods of time where my vision goes blurry for no more than 1hr. I used to be a chef who was able to stand on my feet for 12hrs a day plus and cook and chop all day. Now I get fatigued from just cooking dinner and I cant peel potatoes without my hands cramping or locking up. I also deal with urinary urgency.
I have 2 children 14 and 7 one was a c-section, i had a hysterectomy last year do to they couldnt get my periods under control would have my period for 4 weeks get a few days break and have it again for 6 weeks get a week break and have it for 4 weeks again. I have a family history of diabeties, heart problems, depression, some form of MS that attacks the muscles.
I sure hope someone knows if this sounds like ms or does it sound like something else. I cant seem to get my pcp to SIT DOWN AND LISTEN TO EVERYTHING I HAVE TO SAY much less refer me to someone who might be able to help.

[wildcat2x]

I had back pain off an on for years the last 2 years I would have backpain so sharp that when I moved to stand up or turned slightly it took my breath away literally ( it was worse than labor).  For awhile I had thought it was my low back as that was where the pain was.  However it was coming more from my midback, which eventually we got that figured out (my chiro and I)  I had fatigue for awhile, I thought it was due to the fact my work schedule shifted and I had to get up at 5 am, but was going to bed at 10:00 but wasn't sleeping well.  

My doctor seemed to be going at 100 miles an hour when we met after my tests.  So I had a list of everything (questions and symptoms).  I gave him a copy of the list to read and kept a copy to check off when he answered my questions.  He went through the questions and answered them - not in a big dialogue but short answer, which opened up room for me to think and ask questions.  I don't know if this helped him realize I needed him to slow down a little bit to understand what was going on or if it allowed him to focus on what my questions were, but it did help and he couldn't interrupt the list (lol).

Wildcat

[chefaid90]

forgot to add I have not had any tests done other than a xray of my back. I cant seem to get my doc to listen to me all the way and not interupt me.

[chefaid90]

thank you all. i have had other problems with very degree that come and go. what i noticed first was the fatigue, then memory fog started then the back pain started. Most of these have been around for 9 yrs and the fatigue a little longer. I am looking now for a good neuro and will not take my docs bs anymore they will give me a referral or i will seek out a new pcp. No person should have to deal with the fatigue, muscle pain, numbness and pins and needles feeling this long with no dx. I want to live my life and not have my problems rule my life. I cant do the things I want to do anymore and its depressing. I want to take my kids to the amusement park but cant unless i rent a scooter cause i just cant make it that far without the pain and fatigue almost crippling me. I want to do some many things and cant anymore. I miss my memory and endurance the most. I hate living by an alarm so I know what Im supposed to do so I dont forget. Im only 39 and feel like I am in a 70 yr olds body. Will keep up with the doctors til I can get an answer.

[jujuminx]

MS? Maybe, some of your sx are MS-like, some not, but a dr won't be able to dx unless a lot of other tests are run to eliminate a host of other possiblities including a lot of things that mimic MS.

To get a dx, you need to see a neurologist who should examine you and take a lengthy history of your medical issues.  Blood tests will be done and a lot of test ordered. MRI's are the most common first diagnostic tool if a dr suspects MS.

MS is a disease of the central nervous system and can effect both the brain and the spine. Most people with MS will present in the brain first but 20% will present in the spine so MRI's of your brain and spine should be ordered.

There are several other tests that can also accompany that but at this point, I think you have enough to get you started.  It is very important to get a competent neuro!  If you can find one that specializes in MS, great but I was dx with one that didn't specialize in it.

Good luck to you. Sounds like you have had a go of it for a while.

Julie

[Tammy826]

Sorry your going through all of this!! have you had a MRI?? that would be the first step then seek out a good caring neurologist (they are hard to find)! I welcome you to read my journal as a lot of my story mirrors yours! Being in limbo & knowing knowing what is wrong & not being treated for thr root cause of your problems can be frustrating , as well as depressing! You have come to a good place. Everyone here is loving & very supportive!! I pray you find the answers to what is ailing you!! I had to change my PCP and also went through 5 neurologists until I found a neuro that took me seriously. I was finally diagnosed a week ago today & I'm soon to start meds for MS. I have been told its all in my head, fibromyagia, anxiety, deperssion, conversion disorder...you name it!! Hang in there & don't give up!!! I hope this helps in some way! Best wishes!
                                                                   Tammy

[Sumanadevii]

Chef, please find a good neuro.  My major complaint was lower back pain for years.  I was told it was a little arthritis or a little of this or that.  I kept saying this isn't a little of anything.  I knew something was seriously wrong.  MS normally does not present itself with back pain.  I didn't know my legs were numb because the pain in my lower back didn't allow me to feel anything but that.  By the time they found out it was MS, I was in a wheelchair for any distance walking.  

I do not have any lesions on my brain.  Mine are all on my spine and brain stem.  Bring a list of the things that are interfering with your life to the neuro.  Make it short and sweet so he/she has time to do a good exam.  The only thing I would stay firm on is asking for an MRI on a 3t for your spine.  The 1.5 is not high enough power to get a good picture.

I wish you the best.  Please keep us posted.