Recently diagnosed with 'atypical' MS - next steps unknown

New members should feel free to introduce themselves here

Recently diagnosed with 'atypical' MS - next steps unknown

Postby writer74 » Thu Oct 03, 2013 8:07 pm

Hi everyone! I'm Holly - age 39, mom to 3 kids.

I was finally diagnosed about 3 months ago. I've had symptoms since 2001, mainly cognitive problems, poor memory, bladder issues, but despite seeing multiple doctors over all those years I kept being diagnosed with "depression". Finally this year I had a horrible headache that didn't respond to any treatment for three straight months and convinced my family doc to order an MRI. The MRI showed that I have significant amounts of lesions in my brain.

I was referred to a neurologist, who ordered an additional MRI of my spinal cord and a lumbar puncture (the latter of which was the worst experience of my entire life, by far.) The spinal MRI was normal. The LP showed that I did not have the oligoclonal bands (sp?) that are typically seen in MS, but I DID have elevated protein in the fluid.

I had treatment about a month ago with IV Solu-Medrol, during which I felt absolutely amazing. My brain was clearer than it had been since my mid-twenties before I remember developing symptoms, and I was so much more alert and didn't need daily naps anymore.

Now about a month after treatment, I feel terrible again. My memory is shot, I can't hold my train of thought anymore and I am so unbelievably tired that I sleep about 10 hours at night and still need a nap every day. My hips and lower back feel like they lock in place whenever I have to stand for a length of time, which is incredibly painful.

My neuro prescribed Provigil for the fatigue, but with my co=pay it costs me $200 a month's supply. I did fill a half-month to try it and helps a little, but not enough, which is just as well because I couldn't really afford to take it on a regular basis. My neuro also said that my MS is "atypical" because given the extent of my lesions, I should be completely wheelchair-bound and yet I'm somewhat functional. She said that although my MS looks more like PPMS, she's going to code it as RRMS so my insurance will cover the disease modifying drugs. I'm not happy with her changing my diagnosis and so far I'm refusing to take the DMDs because as far as I know they typically don't work for primary-progressive. However, if what I have is primary-progressive MS, how could I have had what I think was a flare a few months ago?

I don't really know what to do next. I work at home as a writer but the fatigue and brain fog is making it extremely hard to do more work. My husband thinks I should apply for disability but I don't know if I would get it. Is it possible I can find anyone or anything that can make me more alert and functional again? The fact that I felt so good while I was on the Solu-Medrol actually makes things worse now because I know how I could feel instead. Can anything help me feel that way all the time? It feels like there is some better, healthier, more functional version of me that's out there, but I don't know how to reach her again.
writer74
Newbie
 
Posts: 2
Joined: Thu Oct 03, 2013 12:55 pm

Advertisement

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby jimmylegs » Fri Oct 04, 2013 2:10 am

hi holly welcome to the forum. if you haven't looked at the nutritional aspects of ms and would like to investigate, you can do quite a lot of work in that area without breaking the bank. I have lots of info on it if you are interested. there's lots of info out there already but I have a lot of specifics that you could find useful. over the past few years, nutrition has done tons for my levels of cognitive functioning and fatigue. it affects the functionality of a huge variety of body systems, right down to gene expression. let me know if you would like more info.
jimmylegs
Volunteer Moderator
 
Posts: 9153
Joined: Sat Mar 11, 2006 3:00 pm

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby lyndacarol » Fri Oct 04, 2013 7:51 am

writer74 wrote:Hi everyone! I'm Holly - age 39, mom to 3 kids.

I was finally diagnosed about 3 months ago. I've had symptoms since 2001, mainly cognitive problems, poor memory, bladder issues, but despite seeing multiple doctors over all those years I kept being diagnosed with "depression". Finally this year I had a horrible headache that didn't respond to any treatment for three straight months and convinced my family doc to order an MRI. The MRI showed that I have significant amounts of lesions in my brain.

I was referred to a neurologist, who ordered an additional MRI of my spinal cord and a lumbar puncture (the latter of which was the worst experience of my entire life, by far.) The spinal MRI was normal. The LP showed that I did not have the oligoclonal bands (sp?) that are typically seen in MS, but I DID have elevated protein in the fluid.

I had treatment about a month ago with IV Solu-Medrol, during which I felt absolutely amazing. My brain was clearer than it had been since my mid-twenties before I remember developing symptoms, and I was so much more alert and didn't need daily naps anymore.

Now about a month after treatment, I feel terrible again. My memory is shot, I can't hold my train of thought anymore and I am so unbelievably tired that I sleep about 10 hours at night and still need a nap every day. My hips and lower back feel like they lock in place whenever I have to stand for a length of time, which is incredibly painful.

My neuro prescribed Provigil for the fatigue, but with my co=pay it costs me $200 a month's supply. I did fill a half-month to try it and helps a little, but not enough, which is just as well because I couldn't really afford to take it on a regular basis. My neuro also said that my MS is "atypical" because given the extent of my lesions, I should be completely wheelchair-bound and yet I'm somewhat functional. She said that although my MS looks more like PPMS, she's going to code it as RRMS so my insurance will cover the disease modifying drugs. I'm not happy with her changing my diagnosis and so far I'm refusing to take the DMDs because as far as I know they typically don't work for primary-progressive. However, if what I have is primary-progressive MS, how could I have had what I think was a flare a few months ago?

I don't really know what to do next. I work at home as a writer but the fatigue and brain fog is making it extremely hard to do more work. My husband thinks I should apply for disability but I don't know if I would get it. Is it possible I can find anyone or anything that can make me more alert and functional again? The fact that I felt so good while I was on the Solu-Medrol actually makes things worse now because I know how I could feel instead. Can anything help me feel that way all the time? It feels like there is some better, healthier, more functional version of me that's out there, but I don't know how to reach her again.

Welcome to ThisIsMS, Holly.

Because I think MS symptoms are the result of excess insulin, I wonder if your symptoms since 2001 occurred shortly after the birth of one of your children since pregnant women increase their insulin production in order for the fetus to grow and put on weight. I suspect that sometimes the woman's body does not return to normal production immediately when the child is delivered.

You have seen a neurologist, who ordered testing (spinal MRI and LP); did your neuro exam include other elements described here, especially the blood tests?

http://peripheralneuropathycenter.uchic ... #bloodtest


The following section on blood tests has good recommendations.


Blood tests

Blood tests are commonly employed to check for vitamin deficiencies, toxic elements and evidence of an abnormal immune response.
Depending on your individual situation, your doctor may request certain laboratory tests to identify potentially treatable causes for neuropathy. These include tests for:

Vitamin B12 and folate levels (Jimmylegs here at TIMS recommends magnesium, zinc, and copper also.)
Thyroid, liver and kidney functions (especially thyroid hormones testing is recommended by Kathryn Simpkins in her book, The MS Solution)
Vasculitis evaluation
Oral glucose tolerance test (I suggest a "fasting blood insulin test" also – this is not the same as a glucose test.)
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (I think testing for celiac/gluten intolerance is important.)
Lyme disease (Bartman, among other TIMS members, urged this testing.)
HIV/AIDS
Hepatitis C and B

By the way, IV Solu-Medrol is a corticosteroid; these drugs raise the blood sugar level; when blood sugar levels go up, the body produces increased levels of insulin. I believe after your Solu-Medrol treatment stopped your insulin level remained high and is responsible for the fact that you "feel terrible again."

To your comment, "I don't really know what to do next," I would suggest you find a new neurologist. I was appalled that your neurologist would suggest that for any reason you "should be completely wheelchair-bound and yet somewhat functional."!!!

And, for what it's worth, I do not believe there is an effective DMD or treatment of any kind for MS (not to mention the EXORBITANT prices) since the cause of the disease is unknown.

The fact that you could feel good at some time since this started, for whatever reason, makes me optimistic that you (and all of us) can reach our former "more functional version." Put together a medical team of professionals you can really "partner with" – all the best to you.
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?"
User avatar
lyndacarol
Family Elder
 
Posts: 2386
Joined: Thu Dec 22, 2005 3:00 pm

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby CaliReader » Fri Oct 04, 2013 9:39 am

Ritalin and adderall are also commonly prescribed for fatigue and cognitive issues in MS and I believe are much cheaper. Since you're a writer and work from home, you might want to focus more on cognitive treatments like ritalin, and less on fatigue per se. Even if you can only work part of the time, writing is not too strenuous as long as you can think.

Fatigue is tough to deal with but it is usual with MS. There are many things that help some, including exercise, nutrition, some supplements etc. There is a lot of collected information in the THISISMS archived conversations about what has helped various people.

I wouldn't be too quick to assume that your neurologist is right about you having PPMS. Most of us have RRMS, which can develop into SPMS.
Being diagnosed is a shock and there is a lot to learn and assimilate, both intellectually and emotionally. You don't have to make quick decisions about treatment, just learn what you can and decide what you want to do about your health as you go about learning. You will be living with this for a long time so any choice can be reversed later as you learn more.
CaliReader
Family Elder
 
Posts: 194
Joined: Fri Nov 02, 2012 3:30 pm

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby writer74 » Fri Oct 04, 2013 10:16 am

So many interesting and helpful responses! I'm just starting to look into nutrition. My husband and son are both gluten-free; I believe my son is Celiac, but he feels so miserable whenever he consumes wheat that he's not willing to eat it again just to get tested. I did try giving up gluten for about 3 weeks and noticed no change in how I felt, but that doesn't mean it's not worth considering.

The insulin issue is HUGE. I was diagnosed with PCOS all through my 20s, but I no longer show any signs of it. I also had gestational diabetes. My fasting blood glucose is still decent/borderline, but I suspect that I might fail a glucose tolerance test. As such I try to avoid any large amounts of sugar (don't drink soda, rarely eat candy, etc.)

My B12 and thyroid levels were tested and both are normal. I've had my thyroid tested seemingly endless times because I've had such similar symptoms for so long. I do think vasculitis is a very likely cause, as my mom had a very early heart attack and had a temporary bout where she had similar symptoms to what I have. I had vitamin D tested and I am chronically low on it, so I supplement with it. I don't know if I was tested for any of the other things you listed.

I'd definitely like to see if I could try something like ritalin. At this point my brain is so foggy that it is significantly impacting my writing career, but I think I could get it back. Exercise definitely helps me too. I've had this frustrating thing lately where I'll be great with exercising for a week or two and then get injured because I'm so accident prone. Right now I'm recovering from the last such event!

I did get a referral to the doctor in my area who is supposedly the best for MS, but I can't get in to see her until January. I don't know how willing she will be to investigate further.

This gives me a lot of hope! I would definitely like all the information I can get about nutrition, but I'm also willing to look into it on my own, too! Thanks for the warm welcome and information that's actually useful.
writer74
Newbie
 
Posts: 2
Joined: Thu Oct 03, 2013 12:55 pm

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby lyndacarol » Fri Oct 04, 2013 3:51 pm

writer74 wrote:So many interesting and helpful responses! I'm just starting to look into nutrition. My husband and son are both gluten-free; I believe my son is Celiac, but he feels so miserable whenever he consumes wheat that he's not willing to eat it again just to get tested. I did try giving up gluten for about 3 weeks and noticed no change in how I felt, but that doesn't mean it's not worth considering.

The insulin issue is HUGE. I was diagnosed with PCOS all through my 20s, but I no longer show any signs of it. I also had gestational diabetes. My fasting blood glucose is still decent/borderline, but I suspect that I might fail a glucose tolerance test. As such I try to avoid any large amounts of sugar (don't drink soda, rarely eat candy, etc.)

My B12 and thyroid levels were tested and both are normal. I've had my thyroid tested seemingly endless times because I've had such similar symptoms for so long. I do think vasculitis is a very likely cause, as my mom had a very early heart attack and had a temporary bout where she had similar symptoms to what I have. I had vitamin D tested and I am chronically low on it, so I supplement with it. I don't know if I was tested for any of the other things you listed.

I'd definitely like to see if I could try something like ritalin. At this point my brain is so foggy that it is significantly impacting my writing career, but I think I could get it back. Exercise definitely helps me too. I've had this frustrating thing lately where I'll be great with exercising for a week or two and then get injured because I'm so accident prone. Right now I'm recovering from the last such event!

I did get a referral to the doctor in my area who is supposedly the best for MS, but I can't get in to see her until January. I don't know how willing she will be to investigate further.

This gives me a lot of hope! I would definitely like all the information I can get about nutrition, but I'm also willing to look into it on my own, too! Thanks for the warm welcome and information that's actually useful.

Holly, if a neurologist is unwilling to order a blood test for you, go to a good GP or internist, one who is compassionate and enjoys being a "disease detective." I tend to believe that when you see a surgeon about a problem, he will find a solution only in surgery; if you see a neuro, he will only see the problem/solution in neurology. I read an article that summed this up well: "doctors are experts in, and only test for, those parts of the body in which they specialize."

A GP can order any tests: to the earlier list I will add/reiterate: (#1) cortisol level, which can cause blood sugar to rise; (#2)glucose AND (#3) insulin levels (I think the "fasting blood insulin test" is the most important and one of the least expensive tests; your level may be above the optimal 3 UU/ML; (#4) you said thyroid hormone levels have been tested repeatedly ( all these? –TSH, Free T4, Free T3, Total T3, Reserve T3, and antithyroid antibodies). The (#5) CRP (C-reactive protein) test (testing for general body inflammation – best indicator for heart disease; remember, MS is an inflammatory disease) and (#6) liver tests are also a good idea. Ask for a copy of all your test results for your own file – this will help you keep track of which tests have been conducted and the actual number results.

As a writer, you probably like to read,start with two books: Multiple Sclerosis: The History of a Disease by T. Jock Murray, OC, MD, and The Multiple Sclerosis Diet Book by Roy Swank, MD, PhD and Barbara Dugan. You may be able to get these through your local library

I encourage you to eat a healthy diet (From what you say I assume you do.). Many people find that diet can influence the symptoms of MS. I recommend that one removes all sugar (including beer, wine, etc. which have sugar), removes all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, erythritol, mannitol, maltitol, lactitol, etc. (These promote insulin production, too.), removes all trans fats (These also increase insulin.) from your diet. In reading Wheat Belly by Dr. William Davis (I recommend his book.) I learned that "healthy" whole wheat bread raises the blood sugar (and consequently, the insulin) levels MORE than a Snickers candy bar!

My suspicion is that Fatty Liver Disease is also involved in MS, since visceral fat (belly fat) secretes cytokines (like poison to the internal organs), which lead to increased insulin, which leads to inflammation which leads to more visceral fat… And the cycle goes round and round. Diet is important; in fact, you may find the account of Dr. Terry Wahls and her dramatic improvement in MS interesting (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?"
User avatar
lyndacarol
Family Elder
 
Posts: 2386
Joined: Thu Dec 22, 2005 3:00 pm

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby mrbarlow » Fri Oct 04, 2013 7:40 pm

RE: the fatigue, try cutting out all cereals / sugars for a month. I have CIS and am only affected lightly by residual sysmptoms (buzzing in limbs and occasional blurring in left eye) however I was suffering from terrible fatigue and brain fog in the day time. I cut out all cereals and sugar and bang - I have the energy levels of an 18 year old in all departments :wink:

I'm not saying this is the cause for you but its worth a try. Read Lyndas posts as they are very informative on this subject.

The diet is relatively easy. For example I typical eat;

Breakfast - Greek yoghurt with two table spoons of finely ground flax seed (electric coffee grinder is a must) / Mushroom omelette. I also have a teaspoon of coconut oil - the lauric acid is very good for brain function

Lunch - Large lunch box of Salad - avocado, raw cabbage, carrot, red pepper, cucumber

Mid afternoon snack - an apple and tangerine

Dinner - Fish, chicken, lean red meat, or liver with brasscias (kale or brocoli), carrots, one small potato. Occasionally I have chicken stir fry with a small quantity of rice.

Dessert - 2 kiwi fruit & handful of nuts (brazil or walnuts)
User avatar
mrbarlow
Family Elder
 
Posts: 380
Joined: Fri Dec 10, 2010 3:00 pm

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby want2bike » Sat Oct 05, 2013 7:01 am

The only way to treat disease is with diet. These drugs are chemicals which make us sicker. Hope you are not doing the flu shot. Let Dr. Bergman explain the problem.

http://www.youtube.com/watch?v=zGmyUppmt-g

http://vran.org/about-vaccines/vaccine- ... adjuvants/
want2bike
Family Elder
 
Posts: 742
Joined: Thu Sep 15, 2011 8:15 am

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby mmpetunia » Sun Oct 06, 2013 8:39 pm

in addition to all of the other suggestions that have been given, i would recommend exercise if you aren't already. it seems really counterproductive and at first i didn't see a difference, but now i notice a difference in my energy level over the next few days after a long ride. i have pretty severe fatigue at times and it takes alllllllll of my willpower and energy to get up and get moving but in the end i'm glad i did. start small and add in exercise in increments. there are many things you can try--a yoga video, taking a long walk, a water aerobics class, a short easy hike, etc. i was really scared to try exercise even though i kept hearing others claim it helped because i felt like i was hanging on by a thread energy-wise and i couldn't imagine taking a risk and pushing myself even harder. but now a year later, i just rode 40 miles in the waves to wine charity ride. it wipes me out completely when i push hard but then i get it back ten-fold after a day or two. it's worth it! if you already exercise, then just ignore this, but if you don't or if you aren't exercising regularly then now is a great time to start. there is some research that shows it helps with cognitive function too. hope you find something that helps.
Dx: 9/8/11 RRMS
OMS diet plus lean poultry
Tecfidera as of 8/21/2014
18+ brain lesions and 6 spinal lesions
EDSS 1.5-2
http://mylaceybrain.wordpress.com
mmpetunia
Family Elder
 
Posts: 107
Joined: Fri Dec 21, 2012 1:21 pm
Location: SF

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby Cece » Mon Oct 07, 2013 6:43 pm

I have some similarities: my spinal tap was normal, but awful to undergo; I did not have the oligoclonal bands; I can relate to the fatigue and memory problems and brain fog; Provigil for me just shifted the fatigue so that I had a really clear hour or two in the morning for which I paid later on. For me, getting tested for CCSVI was a game-changer because my ultrasound and MRV both showed severe stenosis, and getting those treated has made me feel much better.
Cece
Family Elder
 
Posts: 9054
Joined: Mon Jan 04, 2010 3:00 pm

Re: Recently diagnosed with 'atypical' MS - next steps unkno

Postby vesta » Wed Oct 09, 2013 1:28 pm

Hi Holly;
The brain fog sounds like poor fluid circulation (blood, cerebrospinal fluid)in the brain. Just a simple experiment that should do you no harm, see if a good swim clears up your head.

The fundamental elements of my treatment can be found under the following blog titles on my site MS Cure Enigmas.net

Acupuncture (which includes Self Acupressure)
Paleo-Macrobiotic Diet
Supplements and DeToxification
Five CCSVI MS Types (Congenital, Developmental, Aging, Skeletal, or Toxic M.S.)

I have used energy therapies which enhance blood circulation - Acupuncture, Self-Acupressure, Kinesiology, Osteopathy (France) Chiropractic (USA), Physical Therapy, Massage, Swimming. These may enhance cerebrospinal fluid circulation as well, thus maintaining a brain "fluid" equilibrium. I've decided to begin Deep breathing Meditation to overcome my natural tendency to tense up which must hinder fluid circulation in my entire body. I treat myself daily with Self Acupressure and swim if possible - the BEST way to get the fluids flowing (and overcome the depression caused by fluid stagnation.) I try to get a neck/back adjustment at least once a month. ff I can swim I don't need an Acupuncture treatment, otherwise I try to get one treatment a month. If stressed I ask for a brief neck and upper back massage to push the blood down towards the heart. An emotional shock requires IMMEDIATE attention to stop the blood reflux. (A full body massage will enhance blood circulation, but usually the following day EVERBODY feels tired because the massage releases toxins from the muscles - that isn't particular to MS.) Physical therapy 2 or 3 times a week.

See blog: MS: Cure or Control

MS Cure Enigmas.net
vesta
Family Elder
 
Posts: 362
Joined: Thu Jul 12, 2012 9:10 am
Location: Paris, France


Return to Introductions

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service