My Rocky Road

Hello

This is my first post to this site and I am hoping to get some feedback from others who have taking the rocky road of finding out if they have MS.  I am sorry for the length of my posting however I am at my wits end.

This all started back in March 2000 after having injured my Left rotator cuff at work.  Shortly after this time frame I started to experience a lot of issue with chronic dizziness, nauseous and difficultly walking.  When I would sit my legs would begin to jerk involuntary.  I would also have issue with my knee buckling when walking.  I lost about 8-10 lbs due to being nauseous.  I made a trip to my family doctor who referred me to a neurologist.  I should also note that for as long as I can remember I have had a lot of pain through out my arms and leg and issues with headaches and fatigue regardless of how much sleep I get.  I also had to leave work for a period of 3 months due to my issues.

By the time I got in to see the neurologist most of my symptoms were gone.  During the neurologist visit I was told I possibly had MS and was sent for an MRI (brain only) and a ton of blood test.  The MRI came back negative and blood work was fine.  When I went for the follow up visit the neurologist basically told me that my symptoms were all in my head, that I was young and to get on with life.  I was 24 at the time.  I was told that I have an anxiety disorder and was given Paxil to take.  That was short lived due to side effects. 

I returned to my family doctor at which time he stated I had fibroymaliga and put my on 100mg of amitriptyline (elival) for the pain and issues with sleep and fatigue.  I did not find any improvement.  I remained on this for about 3 years.  Over the years it was determined I have IBS, restless leg symptom as well.  During that time my symptoms would come and go, many trips to the doctor were frequent and he would just want to increase my elival.

Over the last 3 years I have had many issues with the chronic dizziness, ringing in my ears and have been given serc on several occasions.  My family doctor said it was Meniere’s Disease.  I was giving 2 hearing tests a few years apart all was find, no hearing lost and was referred to ears, nose and throat specialist who told me that I did not have Meniere’s due to no hearing lost and was giving a prescription for what he said was silent migraines.  This medication gave me migraines.

I also had issue 1 ½ years ago with a lot of pain in my Left arm.  Any time I would attempt to pick anything up pain would shoot up my arm.  I went for testing to check the nerves all was fine. 

I had accepted the fact that I had medical issues and nobody would give me a straight answer. This brings me to the present time.  The last 3 weeks have been really bad. 

I went last week to my doctor who sat down and I thought he was taking me serious finally.  He sent me for CAT scan and blood work.  All which came back fine, that was going to be the end of it……I advised him that something more has to be done this is effecting my work and my personal life and I need to know what is wrong, not another brush off.  He said it was anxiety that was causing all my numbness on my left side.  I again brought up about it possibly being MS.  He stated that in the last 25 years all his patients who have MS are only effected from the waist down and because I do no have muscle weakness I do not have MS.  He said if I really feel it to be necessary he would refer me to a neurologist.  So now I am waiting for my appointment to have this looked into further.

List of symptoms: 

NEW - Sentences not making sense, not being able to get words out or using wrong words

NEW - Muscles cramps in my legs/Charlie horses

NEW - Tripping over (L) foot

NEW - Left leg, arm and Left side of face going numb, difficulty picking up small items or tie shoes with Left hand, not able to determine amount of pressure applied to items

NEW- Hazy vision in Left I, went to eye doctor and he could not see any issue, was having hazy vision at the time of exam.

NEW - Issue with swallowing, certain food are getting stuck in my throat when I attempt to swallow.  I have to concentrate and breath slowly to get my food down.

NEW - Felt like somebody was sitting on my chest, could not breath

Pain in my arms, legs, neck, headaches

Pins-and-needles if sitting or standing for a long time

Was incontinent several times in one day

Difficulty in night driving, sensitivity to bright lights

Up during the night 3-5 times to urinate

Knee buckle when walking

Tired/fatigue

Mild to sever vertigo/nausea/Increase in motion sickness, very clumbsee walk into things

Disorientated

Memory Issues (only minor, did I turn to burner off before leaving for work, did I lock the door, turn off car lights….)

Sentences not making sense, not being able to get words out or using wrong words

Electricity running down my Left arm into index finger and thumb

From the reading I have done, I understand that an MRI may not show lesions in the early stages of MS.  And they recommend a follow up MRI in 6 months to a year if you continue to have symptoms or develop new symptoms.  Which I have so why is my doctor not willing to invest age this further.  Also what my doctor stated about not having muscle weakness therefore I do not have MS, is there truth to that. 

A year back when I was going through a flare I again brought up the fact of it possible being MS and he looked at me and stated so what if it is MS, then what…..

I am just sick and tired of being sick and tired.  I want an answer, nobody understands my family are tired of hearing me go on and on about this and that they tell me to learn to live with it and I am getting older and these things come with age.  I am only 31; I should not have to live like this.  I look at my husband and friends who are bowling 2 times a week play softball every week in the summer and I sit on the side lines because my body will not allow me to take part.  I am willing to live the rest of my life sitting on the side line watching time pass me bye, I want and need an answer my life has more to offer,  Does it not?

I thank you for your time and hope to hear from you in regards to your thoughts and feedback as to what I should do next.

Hi Doorway,

I wish I were a Neurologist because I would diagnose you. Your story is SO SO SO SO SO similar to mine that I was having flashbacks as I read.

Although I had infrequent problems as a teen, I was fairly healthy. In 1999 I noticed that I was fatigued alot but I would have that happen from October to April and chalked it up as seasonal.

In August of 2001 I suffered a puncture wound to the foot after stepping on a size 0 crochet hook. A month later the volcano erupted. I later learned that the autoimmune response needs a trigger. For me it was the injury, Oklahoma heat, stress from college, and a dying friend that mixed the stew.

I began to have many of the symptoms that you described. I moved back to Michigan and was diagnosed with fibromyalgia, CFS, Mitral valve prolapse, and lupus. During treatment things waned until......

I began having buzzing in my left ear in January 05. I was referred to an ear/nose/throat specialist who ordered an MRI of the ear and brain. Voila! a lesion. He referred me to the first of 6 Neurologists after he said to me that I have MS. I was floored. I began to research MS and KNEW this is what I had.

Each neurologist continued to dismiss me as symptoms continued to grow progressively worse. Even my family no longer wanted to hear my complaints and said mean things to me.

In April of this year I went to a foot Dr. because I had begun to have pain in my old foot injury site. He suggested a series of 3 cortizone shots in the site because there was inflammation. The shot felt worse than the impact of the original puncture wound. The VERY next day I woke up totally blind in my left eye. My Primary Dr. told me to get to my neuro immediately and I did.

I was dismissed once again and I was told that it would be another TWO WEEKS before I could see an Opthoneurologist. On the day of my dismissal I took a gamble and went to ER and the Neurologist there called his collegue who is an Opthoneurologist. He was to see me in 2 days and asked the ER neuro to run a MRI of my brain and spine.

As it turns out my former 6 rocket scientist Neuro's had missed lesions on the optic nerve of BOTH eyes, 2 on the spine, 1 on the brainstem, and 1 on the thoracic spine. My right eye is said to be more damaged than the left but my sight has remained in that eye.

My O/N was treated and I was referred to my current Neurologist who diagnosed me on the spot! A month later I landed in the hospital when I woke up one morning deaf in the left ear. I have since regained the hearing and eyesight although I still have blurriness when exposed to heat or steam.

I also have nerve damage in the legs and hands. I am currently in physical therapy and I use a wheelchair and powerchair when going long distances.

I often wonder if the cortizone injection is what caused all hell to break loose lol. I never took shot #2 to find out.

Anyways I said all of that to say this...

1. You are not alone. I and I am sure many others here can relate and understand what you are enduring at this time.

2. Many times it takes a long time for a definate diagnosis. If you are not satisfied with a Dr. Primary or otherwise and you are able, seek out another. I saw so many neuro's because I KNEW that something was wrong with my body. WE know better than anyone else when something is off kilter. I will never understand WHY medical professionals want to throw us on depressants and clump us in the crazy catagory when they have no concrete evidence. A little compassion goes a long way.

One thing that I CAN say is that my primary physician never once doubted me or made me feel less human. He fought just as hard as I did to find answers. He was my hero and saving grace as I went through my ordeal.

I wish you the best, and will pray that you get the answers that you desperately need very soon.

Soulflower*

doorway4

just wanted to add to what someone said earlier about other diseases that mimic MS. 

I was dx with progressive MS 7 yrs ago and found out a year ago that I have lyme disease.  I had been tested for lyme many years ago when I had a spinal tap done, however now I know that lyme shows in spinal fluid in only about 5% of positive patients. I've also had blood tests but lyme tests are not accurate and the local labs use inexpensive test kits which makes them all the more unreliable.  The best lab for testing tickborne diseases is Igenex in Palo Alto, CA.

Most Dr and even ID & neuro Dr do nt know alot about lyme.  In the past year I have learned so much about this very serious disease.  The list of symptoms is extensive and varies alot from person to person (like MS).  Lyme can cause lessions on the brain and spine also.  I have had several family members who have had lyme but caught it shortly after the bite, took abx and were fine.  My situation and that of many others who have had this in their body for a long time may not resemble what is thought to be the "typical" lyme disease such as sore joints, headaches, etc. that most Dr are familar with.

My advice is to go to a LLMD (lyme literate MD)  for evaluation.  These Dr will not brush you off and send you on your way with antidepressants. They will LISTEN!  LLMDs are far and few between, but it is worth it if you are able to regain your health. If you want to find a LLMD let me know your area and I will find one for you, or go over to the lyme disease board and post a new thread asking for a LLMD in your area. 

I wish you the best of luck and keep us posted.