What else can I do?

[Chapstick29]

I have been seen by almost every Dr imaginable over the past 6 years and to this date the only diagnosis I have been given is Chronic Fatigue Syndrome.  All of these problems began with foot and leg pain on the right side of my body (no injury).  One day I woke up and my foot had contractured.  After some extensive PT I lost all feeling in that leg and foot from the knee down and over time it spread up that leg.  1 year later I began to have weakness in my right arm on and off and was typically brought on by heat.  Now 5 years later I'm losing the feeling in my right arm bicep down and my left hand also has weakness. I have decreased feeling on the right side of my body even my face but no stroke is visible.  I also have parasthesia and it is beyond annoying and sometimes painful.  I have vision problems but my eyes are "just fine".  Sometimes my speech slurs and I fall an awful lot which has now caused ligament damage and nerve damage in the hip and side of my back I can feel.  I was ordered to walk with a cane.  My B levels are fine, my MRI's were fine. Everything is turning up normal. I have bladder problems and have to manually push on my belly to go sometimes but no UTI or kydney disorder  I even went to a psychiatrist to ensure this wasn't in my head and he concured it's not.  From the pain I have short term memory disfunction.  Between that and the numbness in my hands, walking with a cane I'm not allowed to practice nursing at my job.  Everyone keeps telling me they "think I have MS" even Dr's.  I've had symptoms for 6 years, when does this end?  How does this get better?  With no DX no TX.  What can I do to help myself?  I'm already being seen at the Cleveland Clinic in OH but my QSART was normal.  I no longer feel human and am now depressed.  I feel like all I have left is prayer.  Cleveland tells me they will monitor me for 6 to 8 years for MS but as of now it can be "ruled out".  I have an understanding this may never get better, it's been over 5 years with no feeling in my leg.  I just want to slow this down if possible but I am only being given neurontin which has steadied my gait and blocks most of the parasthesia.  I wouldn't blow one of my patients off and I feel like noone wants to help me.  Something inside of me is taking my life from me.  I'm fighting hard with a smile on my face and humor in my holster but it's wearing thin. Thanks for listening.

[Chapstick29]

Thanks again for the responses.  The Dr's and CNP's that I've seen are the ones who first said they think I have MS.  The first was an internal specialist.  She had wanted to do a spinal tap but declined because I was in my 2nd year of nursing school and already on crutches.  She never followed up with me and dropped her practice.  Other random people ask me if I have it also.  A coach for my daughters ball teams wife has it and I hear the comments "She looks like so and so who has MS."  I just wish people would talk to me not behind my back.  My daughter isn't embarassed of me and is my biggest cheerleader!  When I slip and don't fall we celebrate LOL!  She's keeping me going and is truely a blessing.

The Cleveland Clinic said they would eventually do a spinal tap but I first had to get my pain under control.  I'm not a junkie I take a few darvocets here and there for my hip.  I go back to them in August and I guess we will see what she says.  In 05 I had a laprascopic procedure done to even make sure my uterus wasn't pushing on any blood vessels since it's very retroverted.  At this point in time I'm thinking the skin biopsy and spinal tap are the last steps other then follow up MRI's.  The Clinic is 3 hours from me but I am able to stay there if needed over night.

About my parents, yes they have admitted they are embarassed of me.  Now not to the public but to other relatives.  I was asked to not attend a wedding this weekend  by my mother.  I know they feel guilty and have no understanding of this.  I went to a psychiatrist, neuropsychiatrist and the Cleveland Clinic in hopes of proving to them this is real (what ever it is) and not in my head.  My depression has gotten so bad I am going to begin therapy in a few weeks.  I view this "problem" as something that I want answers to.  At this point knowing would be a relief and I would have an explanation and be able to begin trying to slow it down.  I have an understanding this can take years and I have 6 under my belt as it is.  The Dr's where I'm from, especially the neurologists are horrible.  The hospitals are also not top notch so I have to seek help out side of town with the exception of my family CNP who I may not have mentioned is also my boss.  She's given me a job at the office I can handle.  She knows I need to be involved and out of the house and she's really working with me and I am apprieciative towards her.  

As far as my inlaws go, if I can't work full time I'm a loser.  They've never liked me though and that's ok lol.  I had to purchase an epi pen for my iodine allergy just to eat at their house on holidays.  This problem, I just let go.  Too many others to deal with and I give up on them.  I just wish they supported my husband but they don't.  He needs support just as much as I do.  I have recruited his friends to get him out of the house and go golfing or fishing.  I'm trying to keep my family secure, happy and taken care of in all aspects.  I think once we get the newfoundland and get him trained a bit of weight will be off of their shoulders because when I'm home alone if something happens I'll have the bear here to get me off of the floor!  

Thanks again for listening and responding.  This is the most support I think I have ever had and I apprieciate it very much.  Feeling lost is a horrible thing.  I will see this Dr next month and if she doesn't do anything a 2nd opinion will be ordered.  ~Holly~

[RedFlame]

I am surprised that no one ever ordered a lumbar puncture for you.  It could have been used to rule out too and of course you know the O-band stuff.  Is there a possiblity that your nurse practitioner can order one?  Have you had all the other things like evoked potentials?  

You mentioned that people have mentioned the possiblity of MS---are these people that you used to work with?  Doctors and/or nurses?  Is it possible to 'pull some strings' for you to det you in with a top notch neurologist?

I'm with Sarah about the relationships.  

[Sparkysarah]

I just want to say that I can really sense your despair and trying to be strong and hold everything together. I think that when you work in a giving job and are professionally usually on the caring side of the fence..it is incredibly hard to put the other hat on and be the needy person.

I will admit that this is something that I am not good at so can empathise with you about finding it hard to ask for help. However I have learnt that with MS this is something I have had to get better at. I have learnt to value myself, that it is not weak to ask for help and sometimes it is just necessary.

Family can be a really difficult area.....but sometimes our perceptions of what other people are feeling are not quite accurate. So when you say your parents are ashamed of you..is this what they have told you..or what you are assuming?  I would encourage you to try and improve relations with them if possible by talking openly and honestly to them. I would think that they would be immensely proud of someone who gives to others and is obviously also a devoted Mum to their grandchild.  Perhaps they may feel guilty. We cannot change other people (so if you don't get on with your inlaws this may not improve...but we can change ourself and the way we are with people and how they react is their problem.

Anyhow I have not said much about MS, but would agree with others that getting a second opinion would appear a sensible way forward...it is so hard being in limboland and after all this time and what you have been through, you deserve some answers.

With best wishes

Sarah

[Chapstick29]

Thanks for the responses.  I guess I look at things differently because I'm a nurse.  My family CNP has been beyond amazing and when I went to the Cleveland Clinic I basically called them and begged for my life.  We had every test ran needed to rule out all the other possibilities, this was the 4th time in 6 years these tests have been ran.  My misfortune from the neuropathy caused me to have a serious accident a little over 3 years ago and fell down a flight of stairs in my home.  So ontop of this possible "MS" I now have severe ligament damage in my left hip and back and the Clinic is currently aiming towards "chronic pain syndrome" in the sense of actual nerve damage, not a mental induced pain.  

A QSART test is also known as a sweat test.  They electrically put acetycholine (a natural chemical in the body) into your skin and measure the amount of sweat produced.  If the right amount of sweat is produced it means the nerves are functioning properly.  My confusion was they ran the test on the side (at that time) I didn't have the neuropathy.  When I had my 2nd round of MRI's in Feb they did follow the MS protocols because I told them to.  It is my understanding that if you can rule out everything else even with negative MRI's a DX is still possible but the Clinic says that's not so.  The fear of Chronic Pain Syndrome is shying them away from a skin biopsy and spinal tap.  They "Don't want to cause anymore trigger points."  I was told to get my pain under control medicinally yet the Pain Specialist refused to do anything for me.  

I am a mother to a beautiful 11 year old daughter and unfortuantly she is suffering with me.  I can't be the mom I used to be or want to be.  Some days she has to help me down the stairs, on and off the toilet and in and out of the shower.  She is fearful to leave me alone so we're going to invest in a very large dog to help me and hopefully take the burden off of her.  My husband cries secretly but is trying to be strong.  People just don't understand and when you can't say I have this or that they assume you to be a fake or hypochondriac.  My parents are ashamed of me, my in laws well let's not go there but in a nut shell I am very much disliked.  

If you could give me more info for NYU I will call them.  I will try to google them also.  The Clinic is truely giving me the run around and when I'm ill and need this neurologist to see me it's a 6 month wait.  I just want help, some answers and to have a fighting chance against this.  If NYU is the place to go I will get there.  

I really apprieciate the responses.  I'm just so used to helping others it's hard to even admit I need help.  It's not a pride issue it's a me issue.  Thanks again though and I feel lucky to have found this site.  I need people who understand me and what I'm going through to talk to.  

[Guitar_grrrl]

I'm with Red, here.  You need to find a completely different neuro/group, and get another opinion.

Is there any way you could get to NYU?  They wouldn't mess around with this.  Your symptoms need to be taken more seriously.

[RedFlame]

I am so sorry to hear all that you have been through and are still going through.  It really sounds like you have had such a tough time!  This whole process is so demoralizing that it could cause serious depression.  

Do you know if they used MS Protocols on your MRI?  Hae you had a spinal tap? As far as the bladder issue, I have the same problem and I believe it has to do with nerve endings but not sure.  I have never heard of a QSART before but I have heard of some patients having a 'bad experience' at the Cleveland Clinic.  

I do think that you have been blown off!!  It seems like any time a patient presents in an 'atypical' manner people become lazy.  I would think that your obvious neuro losses would be enough.  

As far as feeling like you have something inside that is taking your life---I'm right there with you.  I think you will find a great deal of support and help here.