I still worry about MS....does anyone else?

Hi All,

I hope you don't mind my posting which I anticipate being a little on the longer side. I'm not sure if I've posted my story before, but would love to see what you all think.

Almost two years ago, I had my gallbladder removed after a year of crazy digestional issues. I started having really bad acid reflux, my food wasn't digesting, I was majorly bloated, lost like 15 pounds, etc. My GI doc said I had gastroparesis which threw me into a tailspin. Never checked my gallbladder because I wasn't having any pain, nor was it tender upon examination. Five months later, he decides to go an ultrasound which showed gallstones. By then, I was already a member of the gastroparesis forum and many of the members said that their condition worsened after removing their gallbladders so of course, I refused to remove mine. Finally another six months later I agreed to remove it. During this time, my doc had prescribed me a drug called Reglan which can cause Tardive Dyskinesia, a horrible disfiguring movement disorder.

about two or three weeks after my GB removal, I developed tingling, twitching, numbness and anxiety like I have never felt before. My legs had a crazy pulsating feeling, I was getting a tightness around my tummy, my hands were trembling, you name it. I went to a neuro thinking that the Reglan gave me tardive dyskinesia, he said no, it's anxiety and wanted me to take antidepressants. I said no, I am not taking any drugs after the Reglan thing. Convinced I had tardive dyskinesia, I sought out another neuro...same DX of anxiety causing my symptoms. I said NO...the symptoms are causing my anxiety..not the other way around!!! My symptoms continued to get worse and major depression set it. I literally could not work. Finally, my GI doc (a new one that cared) sent me to UCSF MS center thinking I may have early onset of MS. Finally, someone who is taking me seriously! Mind you, this is one year after my onset of MS like symptoms.

I get my MRI and it shows 20 lesions small and scattered. The doc asked me "have you had lyme disease?". Anyway, I had been tested for Lyme by another uncaring doctor who threw out the Igenex test I'd ordered and ordered a test through a regular lab. Anyway, so I said No. They run tons and tons of tests and nothing indicated that I had MS. These crazy lesions he said were not typical of MS and were something that were very baffling to him and his counterparts (he had shown my MRI to others). Anyway, come back in six months for another MRI. I do, and no new lesions...so off I go with no DX.

Finally, I decide I'm driving myself to Igenex for a test (I live about an hour from Palo Alto where Igenex is located). My results go to a new family doctor that i called to sign off on the paperwork. She calls me and says she got the results back but they look negative. She said she would call the igenex lab for clarifiaction. This was in November 2010. I never hear from her. In January, I decide I wanted a copy of the tests. I pick up the test study it for a few days and release, OMG...it's POSITIVE!!!!! Best darn day of my life finally feeling like I had my answer.

The thing is...I STILL worry that I might have MS. Just last night, I was having on again off again numb patches on my tummy. Last week, my whole head was numb. I'm going to list my symptoms here. some of the symptoms have gone away, others come and go and some are new.

Tingling/numbness under left eye on cheek and chin area.
Twitching all over body....some twitching lasting for days.
Pain in toes/hands.
A tightening around stomach area that went on for a few weeks (later realized that MS'ers call this a Hug)
Pulsating feeling in left leg that seemed to go with my heartbeat.
A tightening feeling in my left leg. My quad muscle would tighten, hold and release. I hated this!!!
Numbness that came and went in groin area, left leg around sock area, left foot and left toenail. The foot thing lasted for a few weeks.
Buzzing in scalp.
Shooting pains in different areas of body that would make me jump from my seat.

Oh my gosh, I had so many more symptoms but these are the ones I can think of at the moment. That thing that bothers me too is that many of my symptoms were on the left side of my body and I know that MS is kind of like that. I just cannot get over the worry that this might be MS. I know I have improved on the ABX treatment, but part of me then thinks "well, I was in an MS flair that has calmed down". Does anyone know what I mean...?

When new things pop up like the numbness in my tummy last night or the cramping pain in my hand that I had this morning, I start getting worried. And last night, I felt like someone was taking a sharp pin into my foot or toe.

Ugh....I try to remain positive, but at times, this all worries me so much. If I didn't have all these stupid lesions on my brain, I don't think I would be quite as worried, but they really worry me.

I know this is long, so for those of you who take time to read my story, I REALLY appreciate it. Gosh, before three years ago, my life was perfect. It literally turned upside down overnight...first with the gastroparesis scare, then with the MS scare and now with Lyme. What is next??

Thanks again!

Me too.  Dx with possible MS, Central Nervous System Disorder over 8 years ago.  Told not Lyme disease so no test. Saw the same Neurologist for 9 years who ordered 4 MRI's over the years that showed increased white matter lesions maybe conclusive for MS but my age was a factor, was 55 when this started now 64.  Hence probable MS etc.  My family MD convinced me to see another Neurologist last Nov. and he orded a lot of blood work and testing.  MRI showed more lesions and that it should be followed up.  Did not talk to or see this Neurologist again.  He wrote my family Dr. the results and what he thought.  He tested for Lyme disease and the EIA came back reactive, Western blot non reactive.  Did not think my symptoms were neurological, did not know why Lyme disease came back with one reactive and suggested to my Dr. I should go to the Neuropsycological Clinic at the University, Arthritis Specialist, General Internist, and Infectious Disease.  Had seen an arthritis specialist in the past and he did not know what I had and wanted to be in the loop re diagnosis, have not done.  Lab that did the Lyme disease test wanted another one in 4 weeks.  Same result.  They asked for another.  Test reacitive again for the EIA  and they did not do the Western Blot because non reactive twice before.  Saw the Infectious Disease Dr., said not Lyme Disease because I could not remember if there had been a rash or if in a Lyme infected area when bitten.  Hmmmmmmmm, how to remember after 9 years.  Do hiking, camping etc.  Started to research Lyme Disease, this site and Canadian Lyme Foundation etc.  Had testing done at Igenex, positive for Lyme disease and Babesia, seeing ND and just started treatment for Babesia last Tues.  I'm hopeful but also wonder about MS.  Have drop foot, balance issues, do not drive because of over reactions to sound, movement towards me, and touch, etc. etc.  Because neither of these illness can be tested to say positively one or the other can be frustrating.  Was told by the Infectious Disease Dr. I saw in April that Dr.'s do not know everthing and I may be one of few they cannot diagnose.  She wanted another spinal tap done, had one in 2002, to see if MS or Lyme disease would show up.  I read the chances are low for either so have not done.  The  next 3 weeks of antibiotics will take me where?  Not sure but hopefully some questions will be answered.  Can call the ND anytime and see him in 3 weeks to go over.  Did say I would be on these antibiotics for at least 6 weeks or more.  Helps to share and know others are asking some of the same questions.  Linda

there are some doctors that believe that lyme is the cause of MS.  MS is a diagnosis made based on certain lab values in the spinal fluid and lesions on the brain.  there is no "MS" bug or certain structure to look for that is specific for MS.  There is some thought that Lyme causes the demyelination, brain lesions and other findings that "diagnose" MS. So it seems logical that the MS symptoms should improve with treatment of the lyme!