Dx 8.28.11 Now Stepping Out To Explore/Learn

[SpringsJessica]

Hi! My name is Jessica, my MS Stats are below. I'm actually "new to me" researching related to MS, as my brother was first Dx with MS 10 years ago but refused to accept the Dx and instead has been Tx with chronic lymes disease. That changed about the same time as my 2nd exacerbation, over the summer, as he too was having an exacerbation. I guess I didn't research MS for myself because I just didn't want to face the reality of it and I was trying to get my practice off the ground.

I have been hit with fatigue that no "normal" person can understand. I try to express that I "can't" and am met with resistance. People have expectations, as though a nap or a good nights rest will just "fix" it. Oh, how I wish that were the case! I finished my masters, but had to drop out of my doctoral training because I could no longer meet the programs' requirements. I originally was very selective in who I told, but my privacy request was not respected and soon began receiving letters, emails, and cards from people I consider acquaintances saying how they were sorry to hear what has been going on. I've become quite a recluse since, preferring to maintain very few relationships. I feel violated by my body and those who were closest to me.

I'm glad to have found a community for us that isn't affiliated with any specific Tx method. Thanks for having me!

[lyndacarol]

Welcome, Jessica, to our community here at ThisIs MS. We are glad you found us. You will find that our group is composed of unique individuals, each with our own experiences and ideas on this awful disease. Your unique perspectives will add much to our community.

As a student, you can appreciate my recommendation to read, read, read. You will find many book suggestions in the Reading Nook forum on this website. For a historical overview of this disease and treatments, I suggest starting with Multiple Sclerosis: The History of a Disease by T. Jock Murray.

I urge you to keep your own file of all your test results. Find a compassionate physician who is willing to work with you. Since my own personal focus stems from the fact that my insulin level is chronically moderately elevated, I suggest your baseline examination and blood work-up includes a "fasting serum insulin test" (this test has only been available in the last 50 years, is not yet routinely ordered, and is one of the least expensive blood tests – the ideal result is 3 UU/ML or less), along with tests for the levels of cortisol, thyroid hormones, vitamin D3, etc.

I encourage you to keep up with your exercise as much as possible and follow an extremely healthy diet. Dr. Terry Wahls, MS patient and Iowa City physician has a dramatic story (http://www.TerryWahls.org) and is currently conducting clinical trials on the regimen she uses.

Stay optimistic; I think the days for MS are numbered!

[SpringsJessica]

Thank you for the advice! I will definitely look over some of the information you've provided. For now, I'm off to work!

[civickiller]

welcome to the forums

did you also have chelation therapy after your amalgam removal?
has you or your brother suffered from any kind head or neck trauma within the last 30 years? e.g. accidents, falls, etc

[SpringsJessica]

Thanks for the welcome civickiller.

I did have chelation therapy after the amalgam removal.

I did have a head trauma just before my first exacerbation. However, the MS specialist I saw said the plaque on my brain was not indicative of a head trauma. I'm curious... your thoughts?

[civickiller]

not to be noisy but may i ask what happen in your trauma?

have you seen your mri with the plaques?

[SpringsJessica]

I was walking my dog (Great Dane) on a flexi lead with flip flops on walking down a hill with dew on the grass. A deer jumped up in front of us and he took off. It all happened so quick, by the time he hit the end of the lead he (180 lbs) was running full speed. My feet went straight in the air and I landed on the back of my head.

Yes, I have seen the plaques on my brain from both of the exacerbations. My original neurologist had me doing 6 month MRIs to track the progression. No noticeable changes during that time. I moved, didn't find a new neurologist and then had a pretty big exacerbation. I have the areas of my brain that are affected written down at home.

[civickiller]

im curious if the plaques are around the ventricles, looks like back to back horns or two crescent moons,

no whiplash 10, 15, 20 years ago?

[bartman]

Springsjessica,
A couple of things to investigate. It's ironic that a deer caused your dog to run quick and you hurt yourself. Perhaps you were bitten by a tick! I mean you were near a deer, you have to consider it. Furthermore, you were sick with a cold...Did you ever treat with antibiotics? You had surgery on your leg....Did you ever use immunosuppresive meds like steroids to recover? It was after many steroid infusions that my cousin became so tired he could barely function which then led me to discover he had lyme, bartonella and babesia. He is much better now than he was after various antibiotics mainly just minocycline and IVIG (started 3 years ago and it took 2.5 years to start seeing major improvement). He also takes copaxone. Did you ever test for Rocky Mountain Spotted Fever? You do live in CO. What about babesia? What about bartonella? These are known co-infections all transmitted by a tic. How is your brother? Does he still treat with antibiotics? Have you checked into chlamydia pn? Many times several people of the same family get infected because very often they are together. And you can easily get reinfected. Often a pet gets sick also. Has your dog experienced any illnesses since you got sick? Again, I only bring all this up because these infectious diseases and there tests are unreliable and it is the biggest controversy in medicine. It might be worth it to give antibiotics a try, most times it's the reaction to antibiotics that leads to the diagnosis. Had I known what I do now my cousin would never have gotten as sick as he did and he never would have suffered for 13 years and essentially made himself worse with MS meds. There are studies out that copaxone + minocycline are better and more effective than just copaxone. I wish you a very speedy recovery and return to good health.

[SpringsJessica]

My neurologist wasn't all warm and tingly about my request to be tested for infections, tick-borne diseases, and pretty much scared me into copaxone. My brother and I were born and raised in MA, so tick-borne disease is a concern. We lived in the woods and were bitten by ticks all the time. We both tested equivocal for lymes disease. He is coming for a visit next month to meet my acupuncturist and share what protocols he's been on and I'll be traveling to OR to do the same with him in March.

I have had a dog with ehrlichiosis, we treated with antibiotics and it cleared. That was in 2002.

I have stopped the copaxone as of yesterday and am turning towards alternative options.

[SpringsJessica]

No whiplash years ago, just when walking my dog in 2006 and after a car accident 12.09.

MRI Impression 6.15.11
1. There is a 9 mm expansile lesion within the spinal cord at the level of C3 as well as a less well-defined 5 mm lesion within the spinal cord at the level of C1. Multiple white matter lesions were identified on MRI of the brain and this compilation of findings most likely represents MS.
2. Right paramedian annular tear and a small disk protrusion at C4-5 which was not clearly evident on the previous exam (5.16.11). There is also a left paracentral annular tear and small disk protrusion at C5-6. There is no significant central canal stenosis or neuroformina narrowing.

My Spinal Fluid Results of Note (what my neuro circled) 8.15.11:
Glucose, CSF: 54
Prot TOT CSF: 19
IGG Index: 1.13
CSF Oligo Bands: Positive

MRI Impression 9.30.08
Correlation is with MRI of the brain dated 8.1.07. A focus of abnormal signal is present in the left frontal deep white matter seen on the FLAIR sequence. Several other lesions are visible in the sagittal FLAIR sequence including one in the posterior aspect of the body of the corpus callosum.
1. Some scattered white matter lesions are present in the hemispheres. One lesion is present in the posterior aspect of the body of the corpus callosum. The number of lesions may have decreased slightly since 8.1.07, although the 6 mm slice thickness and differences in headposition could affect the appearance of small lesions.
2. The vermian folds are slightly prominent for age 32.

[civickiller]

i would recommend starting a healthy diet of organic fruits and vegetables, wild salmon, try to limit processed foods
get tested by a Upper Cervical Care chiropractor to see if you can benefit from this kind of care

i believe these are the best also the most minimally invasive

[SpringsJessica]

civickiller: I will talk to my chiropractor!

[civickiller]

not all chiropractors are trained in upper cervical chiropractics

its stupid because their suppose to be trained in the whole spine

i hope he is, good luck

[daverestonvirginia]

Jessica, My sister was dx with MS about six years before me (about 7 years ago) so that puts us in small group of people who also have a brother or sister with MS. Not really a club I wanted to be in. Both my sister and I are taking copaxone. That's all my sister was doing until I was dx and did some research and decided to go on the best bet diet which also includes vitamin d among other things. Since my sister is a family doctor she did not what to do anything besides the meds, it took me a couple years but now she is on part of the diet and the vitamin's, fish oil, especially vitamin d, which she now really believes in. We both are doing very well and it is good to have someone to talk with. Hang in there and share, talk with your brother. Dave