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doorway4
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 10/5/2006 5:28 PM (GMT -6)   

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.

 


Mezazinine
Regular Member


Date Joined Aug 2006
Total Posts : 100
   Posted 10/5/2006 5:41 PM (GMT -6)   
Oh my gosh......I just can't believe what morons for doctors are out there!!! MS affecting from the waste down only?!?!!!! Please....this guy should lose his medical license. I'm sorry you are going through this.

Here are some tests that you should demand from your neurologist. MRI of the brain with and without contrast. The fact that your first MRI was normal tends to argue against MS because ~95% of MSers will have lesions on the brain even in the very early stages of the disease. It is true that they can appear later on so you should repeat it, esp given your symptoms. You should also have a MRI of the cervical spinal cord, with and without contrast because this is a favorite site for MS to attack.

You may want to consider a lumbar pucture as well. It's an icky procedure but can let you know if there are markers of inflammation in your spinal fluid.

Finally, there are many diseases that can look a lot like MS clinically. These include thryoid disease, collagen vascular disease (ie, Lupus), Lyme disease, and nutritional deficiencies. You should be evaluated for these as well, especially since your first MRI was negative.

doorway4
New Member


Date Joined Oct 2006
Total Posts : 9
   Posted 10/5/2006 5:49 PM (GMT -6)   
I thank you Mezazinine for your quick reply, I really needed to hear feedback from somebody outside of the picture.

When I do see the Neurologist I will be asking for the MRI on my brain and cervical spinal cord. I will also bring up the other suggestions you mentioned. The more information I can take with me to the appointment the better.

I am also aware that there are many diseases that can look like MS. I received test for most of the things you listed back in 2000 however they all came back fine. I will most likely request to have the test run again just incase something was over looked.

uppitycats
Veteran Member


Date Joined Jun 2005
Total Posts : 2135
   Posted 10/5/2006 5:53 PM (GMT -6)   
Not much to add with what Mezazinine said... Indeed, there are lots of disorders -- many that are NOT neurological -- that can present many of the symptoms you're experiencing. If the neuro isn't willing to follow up, maybe your family doctor will, or will be willing to refer you to a rheumatologist who would investigate some of the metabolic disorders, lick what Mezazinine outlined. Yes, a spinal tap would be a good thing, as if it doesn't point to MS, it might point to some other disease process going on.

Good luck! And I'm sorry you're getting the brush-off..
...I am not a doctor, nor health professional, and don't pretend to be one, here.....


soulflower
Regular Member


Date Joined Oct 2006
Total Posts : 24
   Posted 10/5/2006 6:20 PM (GMT -6)   

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*


carolynvb
Veteran Member


Date Joined Oct 2006
Total Posts : 540
   Posted 10/8/2006 7:31 PM (GMT -6)   
Hi there,  I have copied my posting so you can see my similar issues.  The one Neurologist that I went to told me that she could not help me and that maybe I had conversion disorder.... I ran not walked to my regular doctor who said NO NO NO... she is looking at some test results not the person.  He then sent me to another neurosurgeon who said something is flaring up...I picked up my results from the nast Neurologist and saw my raised SED rate which indicated something was flaring up and was so angry she just dismissed me. It is an ongoing battle and my next neurologist appointment is on Nov 1st.... one of the big signs of conversion disorder is lack of concern for physical syptoms!  I have been magnetized, electrocuted and punctured so many times in an effort to get help!  What more can I do!!!!!!!!!!!!!!! I am right there with you... here is the post:
 
I need some help.  I have been unwell for more than  2 months.  It seems my flare up has ended but many of the symptoms are still there.  The symptoms are as follows:
 
headaches, neck pain, hair loss, flushed cheeks, pain in arms and legs, for a period of 3 weeks could barely walk due to joint stiffness and pain, heavy feeling limbs, muscle spasms, fatigue, sleeping issues (think it may just be largely due to my lack of activity) tingling in limbs also hands & feet, numb patches of skin, burning patches, creepy crawly feelings in legs and back(like strange vibrations) dizziness, blurry vision, numbness and pins and needles in legs feet and hands and tremors. My hands have taken on a life of their own and when they are resting my fingers will move on their own spasmig.  It is not painful when they do this but is distrubing.
 
  Before this I was a healthy and active 36 year old. about 2 months ago I realized my arms would get tired fixing my hair or picking up the milk jug.  Then it was difficult for me to get up from sitting or kneeling and things just kept on getting worse.  The worst of the symptoms lasted for about 4 weeks. 
 
My doctor sent me for  MS MRI's and was diagnosed with a meningioma (brain tumor)on the saggital sinus.  To add insult to injury my symptoms I am told are a NOT a result of the tumor which can not be removed until the neurosurgeon feels the "Flare up" is over. Great.....
 
I was tested 2X for lymes the MS MRI did not show lesions on the brain or spine. My EMG was normal.  I am waiting to see another neurologist Nov 1st for further testing.  If this is MS and a spinal tap is done and I am not in a full flare up will the tap still show positive if I have MS?
 
My symptoms change daily and the unbearable pain has gone.  The general day to day living is OK.  I am weak and have pains, muscle spasms and pretty much all the symptoms above other than rolling around on the floor in agony!  I am at a loss. 
The doctor tells me my reflexes are way too strong and my SED rate went from 1-60 in 3 weeks.  My white count bounces not too high but higher than it should be and now my SED rate is down again.
 
I feel as though I am losing my mind.  1 neurologist told me she could not help me my issues are not neurological my own doctor and 2 neurosurgeons seem to think differently. I have been to a rhuematologist(sp?) and he says not arthritic/rhuematic.
 
I am so upset and confused and fearfull that the pain will be like it was....  I am about 2 and a half months into this hell and have no idea what else I can do.  I posted this on the Lymes forum also as I have heard you can sometimes get a positive negative but I am running out of ideas  sad  Does the ANA blood test apply to MS or just other auto immume diseases.  Would I have lesions on spine and brain first time I have a flare up?
 
Any ideas?
 
Thanks,
 
Carolyn, Virginia Beach

KIMC
Veteran Member


Date Joined Aug 2005
Total Posts : 682
   Posted 10/9/2006 4:36 PM (GMT -6)   

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.   

 

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