This Is MS Multiple Sclerosis Community: Knowledge & Support

Hello everyone,

My wife, now 31, was diagnosed with RRMS formally this past March, but had been having episodes since the prior August. She could not be properly diagnosed then because the onset was while she was pregnant. It started with optic neuritis, then she had some complications while pregnant that may or may not have been related (rare form of preeclampsia.) Soon after our healthy baby boy was born, she had another attack that presented itself as a stroke, leaving her extremely weak on her right side and some hindered cognition. Upon having the MRI they were able to identify 6 fairly sizable lesions, subsequently put her on Tysabri to settle down the hard onset.

She's getting stronger physically everyday, but still tires easy - and with all there is to do with a newborn on top of her new diagnosis she's been pretty depressed. She hasn't been at work since January because she had a desk job, and now can't type or use a mouse and has an extremely difficult time finding the pointer on the screen. We've just about run down our savings between the medical bills, ridiculous cost of her medication and new family expenses - and I think it will be beneficial financially, but moreover her mind-frame to get out of the house with a small part time job that she can do. I don't know what type of suggestions to give her though. She can walk unassisted, but cannot remain on her feet for too long. She can't have a job that utilizes a computer too much, and she is too weak at this time for anything physical.

I was hoping that in posting here we would be able to get some suggestions on that, and also how to help her out of this funk. She's on anti-depressants and sees a therapist once every 7-10 days, but still battles frequent bouts of it. I'm trying my best to get a better job myself, but right now we're not going to stay afloat as a one-income family. I made the promise to her 2 years ago that I'd be with her in sickness and health, and I don't think she fears that. It's more about finances and wanting to feel "normal" and be more active with our now [almost] 6 month old.

Anything would be great,
thank you for taking the time to read.

-D.

Welcome to This Is MS, Dave. You have found a supportive community; we come from many different ideas and experiences; we will offer our suggestions when asked. You and your wife have a difficult situation to handle; I commend you for remembering your vow to be with her in sickness and in health; obviously, you are a man of great integrity – and you WILL be able to deal with this. Congratulations on your son! Our son has always brought my husband and me great joy, as I know your son will bring to you. Do you have family, or friends, or neighbors, or a church membership that might be able to help you and your wife with the needs of your son or even the chores around the house? Babies are a lot of work!

I cannot offer any specific job ideas. You said she had a desk job; won't her employer accommodate her needs? For instance, there is a speech-recognition program called Dragon NaturallySpeaking that would allow her to operate the computer with her voice. There are requirements of employers in the government's Americans with Disabilities Act (ADA).

I encourage you both to work closely with her GP; he may be aware of social services available to you. Concerning expensive medications… my own opinion is that they are not worth it – I used Betaseron, Avonex, and then Copaxone, but did not feel they did anything at all for me. I have chosen to stop all MS medications. I think that diet can be more effective. The story of Dr. Terry Wahls and the dramatic improvement in her MS is fascinating: http://www.TerryWahls.com

_________________
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

Dave,
Have you checked out if your wife has been tested for Lyme? and coinfections CPN, Bartonella and Babesia? The most effective MS med is copaxone + minocycline and coincidentally this also would cover these infections. Educate yourself about Lyme disease and how it is the biggest controversy in medicine and current testing has a 60% false negative!! The amount of people being misdiagnosed with MS is astonishing. Find a LLMD (lyme literate doctor) and your wife can recover. Tysabri and other MS meds are immunosuppressive, which means they are making your wife worse by wiping out her immune system and allowing the infections to spread quicker. My cousin was misdiagnosed for 13 years but is making incredible improvements on minocycline and other antibiotics. It's not easy but it works. Ask you Neurologist to show you the lyme disease test that he took prior to diagnosing your wife. You need to get a copy of the test. Is it the Elisa or the Western Blot?

Dr. Swank spent 50 years proving diet is the key to controlling MS. A study done in England show people doing the MS drugs did worse than the people not taking the drugs. A diet of raw fruits and vegetables give the body the nutrients it needs to heal itself and deal with or any disease.

http://www.overcomingmultiplesclerosis. ... gram/Diet/

http://www.youtube.com/watch?v=GJyQTTZr ... _embedded#!

http://articles.mercola.com/sites/artic ... nking.aspx

Dave,

As you can probably tell, you're probably not going to get a whole lot of useful advice here (other than lyndacarol's practical advice). Maybe you can contact your local chapter of the Multiple Sclerosis Society; they might have some services that can help.

You and your wife have been in my thoughts since I read your first post. Many members at this website have unique ideas about MS; mine concerns excess insulin. You did not ask for my suspicions on this awful disease, but please allow me to make some observations; it is kindly meant.

When a woman is pregnant, her body (the pancreas specifically) ramps up production of insulin in order to put weight on the baby she is carrying. It is common for women to experience a flareup of MS in the several months after giving birth. I suspect that the excess insulin in your pregnant wife started the MS cascade; when the baby was no longer inside her body, her pancreas could not return to normal quickly and she had an even greater excess of insulin.

Insulin can cross the blood-brain barrier and promotes blood clotting – I am not certain, but I believe this clotting ability is involved in preeclampsia and possibly her stroke. Perhaps her body has difficulty shifting back into normal insulin production even now. Her doctor could order a "fasting blood insulin test" to check; the ideal result is 3 UU/ML or lower (My first test was 12; my later tests have never been below 9.). Just my thought – all the best to you.

By the way, there have been some studies in which fish oil capsules (or cod liver oil – essential fatty acids) seem to improve depression. I think there have been a couple that also showed no benefit. Perhaps you might discuss with her doctor whether fish oil might be worth a try for your wife.

_________________
My hypothesis: excess insulin (hyperinsulinemia) plays a major role in MS, as developed in my initial post: http://www.thisisms.com/forum/general-discussion-f1/topic1878.html "Insulin – Could This Be the Key?"

hi dave welcome to the forum

your wife's back story of pregnancy, optic neuritis, preeclampsia, stroke, ms dx, cognition issues, depression, etc, all point to zinc as a possible underlying common denominator. i can provide a list of research supporting the link to zinc for each item on that list if you like.

quick example:
Nutritional effects of zinc on ocular and systemic physiology.
http://www.ncbi.nlm.nih.gov/pubmed/6454715
"...Observations of Denver children have suggested that suboptimum zinc nutriture may be quite common in otherwise normal infants and children in the United States. The most likely cause of this deficiency is dietary insufficiency. High concentrations of zinc are found in human ocular tissues and are closely related to visual function. When zinc levels are inappropriately low, results can include ocular birth defects, reduced ability to dark adapt, excessively low IOP, and optic neuritis."

i would recommend considering a serum zinc test, then bring the results here.

if some of the functional issues that are causing the problems can be resolved, perhaps your wife's mood will improve. then the way could be paved to some options going forward, that might currently sound too overwhelming.

my signature links below have lots of pertinent info and i'm going to refer you to this link re a different case, earlier in progression and not yet diagnosed, but also a young mom's story: general-discussion-f1/topic19575.html

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Hi, I just wanted to write you a quick post to say I was affected pretty bad cognitively after a relapse.
During my relapse I could not do anything for myself, I lost the joy or excitement you get from doing stuff and had no motivation to do anything (I was an A type personality with the get up and go that would tire anyone).
I didn't even feel the love I have for my dogs.....I was unable to multitask or take instructions, or cope with anything that did not run smoothly (I would just breakdown). I could not type or have the attention span to do anything that required brain power. It was like it came from the same feeling of energy required to run a marathon even though it was a mental task rather than physical. I could hear a song on the radio that I knew I knew but it felt like I was hearing it for the first time...it was so weird!
It is so hard to explain to someone who has not had damage to the brain in this way.

I had an MRI which showed major damage to the frontal lobes.....

This was a year ago and I reckon I am 90% back to what I was. I feel like I still lack the ability to cope with very stressful situations, I find it hard to motivate myself to do dull tasks sometimes (more than usual) and have issues with word finding, spelling and remembering stuff in general and am much more irritable then I ever was. However I am so much better than the inital attack (or stroke the dr's still think it was more stroke like). (I have found a couple of low dose aspirin's a day have helped me.....I have thicker blood than normal and don't have an issue with taking that 150mg daily but I am monitored by a dr and have blood test reguarly, maybe you could speak to the dr about trying at least 75mg of aspirin)

The reason I am writing this is because I hope you can be patient with your wife. The depression I got I know came from the damage to my brain. I was never ever depressed before and was always able to believe in a light at the end of the tunnel but for some reason the damage to my brain never allowed my inner voice to reassure me like it used to.
Please be patient with her and hopefully her cognition will come back too.

Just wanted to share....

Thank you all so much for the information. Really, we're trying to take in as much as we can so we can get through this - so I don't mind hearing anyone else's opinion.

To offer a few responses:

Lynda - Our families have been huge in care-taking assistance. She has 2 local sisters that have been coming by on their spare time, along with her mom, her great-aunt, my mom, and my 3 aunts. Everyone loves the baby, and he really is the silver lining in all this - because he's just so darned good! We've been getting some meals made for us - they'll bring her grocery shopping, etc. It's a huge help.

As far as the fasting blood-insulin test, I don't know if she had that specific test, but she was monitored relatively close while in the hospital with preeclampsia for that same reason - I can check on this. Also, we are both on a cod liver oil regimen.

Bartman - She had at least 4 lyme tests that I know of - all obviously negative. I will be happy to ask for the type though. As far as the others - I'm not sure, but can inquire about those as well.

Jimmy - I can add the zinc test to her list as well - She has to have blood work to get tested for the JC virus again pretty soon. It's all part of the tysabri treatments.

LR1234 - She is/was a very strong type A as well, so I completely understand. She has had her bouts of anxiety and depression before - usually related to big events (buying a house - planning a wedding, etc.) Now it's obviously become more frequent. I'm doing my best to stay positive, and be of assistance - but every once in a while I do get frustrated. I usually just walk it off or something, because I it's exponentially harder for her.

I will definitely inquire about the asprin - she's always had sub-par circulation, making her cold frequently - but now she always has pins and needles and gets really uncomfortable if the room or car is at a comfortable temp for me. (i'm just the opposite, I produce a lot of heat) if asprin would remedy that, it would be quite amazing.

Just one more thing to add - we've both watched that video about the raw veggie diet, and have done some considerable reading on it. We've incorporated more into our diets than we had been - but it's really difficult to eat that much produce regularly because it's so expensive. I even tried to start a garden this year to help alleviate some of that - but it didn't make it. [blackthumb syndrome]

I know the explanation is that the food is going to cost less than the cumulative amount of healthcare related to a poor diet - but that theory

Hi Dave
Depression is normal with MS, not just because it's depressing, but also because it throws off the body's chemistry. when you or your wife are low, try taking a bi-carb or 1/4 tsp baking soda in a couple oz water and drink it down. (If it works you can buy it in capsules on amazon.) (Don't try it if you have stomach or cardiac probs without asking your MD). If it works, it's an indicator that the immune system is overloading and having an allergic reaction. (Yes, depression can be just an allergic reaction.) There are different routes to take for that.

Since the Lyme tests are inaccurate, there's no point in retesting. Lyme does cause MS. The treatment for Lyme can be the opposite of what's needed for MS, though. If you suspect Lyme, based on symptoms, then it might be best to do a course of the antibiotics for it.

Jobs at home - depends on what she likes to do. There are many ways to market different things including skills via the internet.

There are some supplements that can fight to remyelinate. Resveratrol, for example.

Also is she on a DMD yet? (Disease Modifying Drug) Avonex? Betaseron? Copaxone? The sooner she gets on one, the better her chances are.

Lyme does not cause MS. Lyme causes Lyme Disease. Some of the symptoms of Lyme Disease overlap with symptoms of MS.


NHE

What is MS? MS or Multiple Sclerosis means 'many scars'. That's it. There is no test for it, it is a clinical diagnosis based on an MRI of white matter lesions. Lyme disease can cause the same white matter lesions and the same symptoms. Anyone who thinks MS symptoms and Neuro-Lyme symptoms are different have NO idea what they are talking about. In fact a growing amount of doctors think MS is caused by Lyme + coinfections. What do you call a person who was diagnosed with MS but then 13 years later is positive with Lyme, Babesia and Bartonella? After a year of antibiotics the lesions decreased in size and miraculous improvements happened. What does this person have? Lyme or MS even though there are still some lesions.

Due to the controversy they say he has both, treats with minocycline + copaxone and that way everyone is happy, the MS doctors sell there $30k medicine with no science it does anything plus minocycline which treats the infection and cost nothing. If you ask an MS neuro the minocycline is not treating an infection it's being neuroprotective...sure it is!!

An MRI of a person with MS and Lyme can and does look exactly the same. It's really a no brainer, MS meds will maybe slow down the disease. Antibiotics, the only known medicine to ever cure anything will get you better but not until after you get worse due to a herxheimer reaction which is the killing of the infection and the body unable to handle the toxic release of the infection...Thats why it takes a long time to kill. the length of time to treat Lyme is one of the major issues at the heart of the biggest controversy in medicine. MS meds suppress the immune system and if you have an infection will disseminate the disease all over your body in every single nook and cranny and become impossible to fix.

This happened to my cousin, I saw it firsthand and it was horrific. He is much better on minocycline but it took years to get better. He had many infections. This is a very complex disease and requires a lyme literate doctor.

You need to get a copy of all your lyme test. If you don't have a Western Blot your doctor has failed you. If you do have a WB you need to examine which bands are positive and which are not. This is way complex to explain. Find out which test she took and get copies even if you have to go to the office and get them. Very important.

Lyme Disease can absolutely cause MS. In fact, spirochetes have been thought to cause MS for 100 years. The amount of people misdiagnosed with MS when really Lyme is incredible and in my opinion eventually this will come to light.

Diagnosis of multiple sclerosis (MS) requires exclusion of diseases that could better explain the clinical and paraclinical findings (2008)
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2850590/

Patients suspected of having MS may have neurological syndromes upon initial examination that are clinically monofocal (no dissemination in space, for which a single CNS lesion can explain signs and symptoms), multifocal (dissemination in space, for which symptoms and signs can only be explained by at least two lesions in separate parts of the CNS) and that have been, over time, monophasic (a single occurrence), multiphasic (relapsing), or progressive in nature. Similar presentations can occur in patients who have an infectious, neoplastic, congenital, metabolic or vascular disease, or non-MS idiopathic inflammatory demyelinating disease (IIDD). Other IIDDs have symptoms that can be similar to those seen in MS (for instance, neuromyelitis optica [NMO], opticospinal MS in Asian populations [OSMS], acute disseminated encephalomyelitis [ADEM]), but differ in course, pathophysiology, treatment, and prognosis (see Figure 1). The ability to make an accurate diagnosis as early as possible is important for patient management, counseling, and optimal therapy.

Figure 1 http://www.ncbi.nlm.nih.gov/pmc/article ... 508096878/

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

hey dave, hope your wife is successful getting the zinc test! re tysabri, i apologize for knowing very little about rx.. are the tests to screen for jc virus? or has she got it/PML?

i looked for zinc status in JC infection, and i also looked for tysabri - zinc interactions, not coming up with anything right off the bat..

_________________
my approach: no meds so far - just balanced whole foods (partial 'paleo', much less outright elimination), science, supplements, & bloodwork
my regimen - www.thisisms.com/ftopict-2489.html
www.whfoods.com, www.nutritiondata.com

Good article Jimmylegs. Just one question ...How can you ever rule out a lyme infection when there is a 60% chance of a false negative? And this comes from Johns Hopkins! You have to understand the lyme disease two tiered testing and the ridiculous CDC (Dearborn Criteria) required bands on a WB which don't include the two most important bands which are lyme specific. This testing system was designed to fail and hence the rise of the autoimmune epidemic where expensive meds provide a re-occuring revenue for big pharma.

Something has got to change, we are all in trouble...I know way too many people with autoimmune diseases... who doesn't have one?