Multiple Sclerosis Barbie

[littlestbabie]

Hi! I'm newly diagnosed with RRMS, I'm a twenty-three year old college student & mother to my gloriously sassy two year old daughter. I was recently diagnosed after I finally brought up some concerning symptoms I'd been having periodically to my family doctor. My symptoms started in 2014 when my right hand and arm went numb for about two months. The symptoms faded away as mysteriously as they'd come on, and I didn't think much more of it. Then in April of 2015 the bottoms of both my legs (below the knee) went numb and tingly, and I began to experience intermittent blurry vision and flashes in my vision. This time the symptoms lasted for another two months, and progressed exponentially over the summer. I ended up becoming numb and tingly on the entire lower half of my body, up the left side of my stomach and over my shoulder. The symptoms finally went away in August, but unfortunately this bought of MS symptoms left my nerves damaged and my reflexes and movement lacking, particularly in both my lower legs, and especially my right one. It was those symptoms that I brought up to my doctor, bc I was having trouble moving from sitting to standing and walking correctly with my lagging legs. I even fell once or twice. I would describe the feeling as my legs not communicating with my brain; they are heavy and sluggish, and they don't like to do what I tell them to! It was the falling that concerned me the most; having a young child who I often carry, I brought it up to my doctor and I got in for my MRI right away. I was referred to an MS specialist in Syracuse NY and upon my first appointment just a couple weeks ago, I was confidently diagnosed with MS.

I got to look at my MRI and the lesions were apparent - bright gray and white spots spanning over the layers of my brain tissue. Honestly I expected them to be a lot more violent looking, but there they were, fuzzy white marks that extended through the whole of my brain from top to bottom. Just yesterday I had my second MRI, which was of my spine. I'll get to see the results of this MRI at my follow up appointment on the 21st, where I'm also going to be submitting a request for my chosen medication to treat the MS. What that medication is, I honestly don't know at this point. I really really really don't like the idea of having to give myself shots right off the back, so I'm keeping Copaxone as a last-resort sort of deal that preferably won't have to be used! The options I was given at this point were Copaxone, Tefidera, and Gilenya. Like I said, I really don't want to start off with injections, so I'm keeping Copaxone in my back pocket at this point. As for Gilenya, well, I'm a vain and beautiful creature: I don't want to lose my hair!! (Which I now understand is potentially a risk with Tecfidera as well, so... crap).

My grandmother died this past summer at 72 after living with extreme symptoms of MS for most of her life. She was diagnosed at 29 and as there were no real reliable meds available until the 90's, she wasn't adequately treated for the condition most of her life. She had lost the ability to walk by the time she was 50 and she led a pretty miserable life, tbh. For the last thirteen years before passing away she languished away in a wheel chair at a nursing home, slowly becoming less aware of both herself and her surroundings, and eventually succumbing to MS, diabetes, and a nastily infected bed sore. So, I know the bad end of this disease and what it can do to a person. My grandmother was described as a vibrant and wonderful woman by everyone who knew her in her youth, but as she aged and her symptoms became more troubling she definitely withdrew into herself and became very spiteful and just, well, pissed off. Who wouldn't be, right? I'm not happy about this diagnosis either, but I'm fighting hard to remain as optimistic as possible! In this span of a few weeks in between my neurologist appointments I've taken things into my own hands for time being and begun implementing a high(ish) dose of Vitamin D and I've begun to take regular vitamins and supplements. I'm also considering over-hauling my diet, as from my research it seems as though processed sugars, gluten, and some dairy products can be an enemy of MS. (Has anyone had any luck on a paleo diet, btw?? I would relish some input!) I'm also trying to work up the courage to begin working out, as obviously exercise is pretty much good for anything. (I've always been skinny, but I've never been healthy). I also had my last cigarette this new year's eve. (I quit about a year ago, but I used to light up in social situations... obviously that has to stop, as it's been shown to aggravate and speed up the process of increasing MS symptoms). I also have extreme social anxiety (Like, yikes, I'm so awkward and awful, haha) and depression.

I think that's it! Holy moly. I'm glad to have found this forum bc it seems to be markedly less full of sh*t than other MS forums that I've come across. I hope I didn't scare you all away with this novel of a post.

[lyndacarol]

Hi! I'm newly diagnosed with RRMS, I'm a twenty-three year old college student & mother to my gloriously sassy two year old daughter. I was recently diagnosed after I finally brought up some concerning symptoms I'd been having periodically to my family doctor. My symptoms started in 2014 when my right hand and arm went numb for about two months. The symptoms faded away as mysteriously as they'd come on, and I didn't think much more of it. Then in April of 2015 the bottoms of both my legs (below the knee) went numb and tingly, and I began to experience intermittent blurry vision and flashes in my vision. This time the symptoms lasted for another two months, and progressed exponentially over the summer. I ended up becoming numb and tingly on the entire lower half of my body, up the left side of my stomach and over my shoulder. The symptoms finally went away in August, but unfortunately this bought of MS symptoms left my nerves damaged and my reflexes and movement lacking, particularly in both my lower legs, and especially my right one. It was those symptoms that I brought up to my doctor, bc I was having trouble moving from sitting to standing and walking correctly with my lagging legs. I even fell once or twice. I would describe the feeling as my legs not communicating with my brain; they are heavy and sluggish, and they don't like to do what I tell them to! It was the falling that concerned me the most; having a young child who I often carry, I brought it up to my doctor and I got in for my MRI right away. I was referred to an MS specialist in Syracuse NY and upon my first appointment just a couple weeks ago, I was confidently diagnosed with MS.

I got to look at my MRI and the lesions were apparent - bright gray and white spots spanning over the layers of my brain tissue. Honestly I expected them to be a lot more violent looking, but there they were, fuzzy white marks that extended through the whole of my brain from top to bottom. Just yesterday I had my second MRI, which was of my spine. I'll get to see the results of this MRI at my follow up appointment on the 21st, where I'm also going to be submitting a request for my chosen medication to treat the MS. What that medication is, I honestly don't know at this point. I really really really don't like the idea of having to give myself shots right off the back, so I'm keeping Copaxone as a last-resort sort of deal that preferably won't have to be used! The options I was given at this point were Copaxone, Tefidera, and Gilenya. Like I said, I really don't want to start off with injections, so I'm keeping Copaxone in my back pocket at this point. As for Gilenya, well, I'm a vain and beautiful creature: I don't want to lose my hair!! (Which I now understand is potentially a risk with Tecfidera as well, so... crap).

My grandmother died this past summer at 72 after living with extreme symptoms of MS for most of her life. She was diagnosed at 29 and as there were no real reliable meds available until the 90's, she wasn't adequately treated for the condition most of her life. She had lost the ability to walk by the time she was 50 and she led a pretty miserable life, tbh. For the last thirteen years before passing away she languished away in a wheel chair at a nursing home, slowly becoming less aware of both herself and her surroundings, and eventually succumbing to MS, diabetes, and a nastily infected bed sore. So, I know the bad end of this disease and what it can do to a person. My grandmother was described as a vibrant and wonderful woman by everyone who knew her in her youth, but as she aged and her symptoms became more troubling she definitely withdrew into herself and became very spiteful and just, well, pissed off. Who wouldn't be, right? I'm not happy about this diagnosis either, but I'm fighting hard to remain as optimistic as possible! In this span of a few weeks in between my neurologist appointments I've taken things into my own hands for time being and begun implementing a high(ish) dose of Vitamin D and I've begun to take regular vitamins and supplements. I'm also considering over-hauling my diet, as from my research it seems as though processed sugars, gluten, and some dairy products can be an enemy of MS. (Has anyone had any luck on a paleo diet, btw?? I would relish some input!) I'm also trying to work up the courage to begin working out, as obviously exercise is pretty much good for anything. (I've always been skinny, but I've never been healthy). I also had my last cigarette this new year's eve. (I quit about a year ago, but I used to light up in social situations... obviously that has to stop, as it's been shown to aggravate and speed up the process of increasing MS symptoms). I also have extreme social anxiety (Like, yikes, I'm so awkward and awful, haha) and depression.

I think that's it! Holy moly. I'm glad to have found this forum bc it seems to be markedly less full of sh*t than other MS forums that I've come across. I hope I didn't scare you all away with this novel of a post.

Welcome to ThisIsMS, littlestbabie. We are glad you found this forum, too,… And no, your post has not scared us away.

I am curious to hear more about your journey from symptoms to diagnosis. The symptoms (even lesions in the brain) you have described are common to many conditions, which should have been ruled out before MS was even considered.

Starting with vitamin D deficiency (which is found in 50% to 90% of the American population), I hope your GP or another physician (even your MS specialist can order this testing) has ordered a vitamin D test (a.k.a. 25-hydroxyD). If so, I hope you will share the actual number result with us (It is a good idea to request your own copy of any test results.) A vitamin D deficiency can cause neurological symptoms.

You say that you have started taking a high dose of vitamin D… What do you consider high? 10,000 IU of vitamin D3? A smaller amount; a larger amount?

A vitamin B12 deficiency can also cause neurological symptoms such as you have described. I hope one of your doctors has ordered testing for this. Thorough testing should have included these 4 tests: 1) a serum B12 test (this test alone is not adequate to find a deficiency), 2) RBC folate test, 3) a serum homocysteine test, and 4) a methylmalonic acid test.

B12 deficiency can run in families, any person at any age can develop B12 deficiency – for your daughter's sake it might be important to know if you have a B12 deficiency.

Have other nutrients, like iron (ferritin), magnesium, and zinc been tested? These nutrients are also often low or deficient in MS patients; and correcting a deficiency can improve symptoms.

I assume other possible causes for your symptoms have been tested and ruled out… like thyroid problems, kidney problems, and ALL the others. You are wise to quit smoking entirely. And it is wise to focus on your diet (good for your daughter, too) – an organic diet will minimize your exposure to the dangerous chemical glyphosate, which is the main ingredient in the herbicide Roundup. (This is now found in 80% to 90% of the US conventional food supply.)

[littlestbabie]

Over the summer I was diagnosed with a vitamin deficiency, specifically I was severely lacking in vitamin D. Not surprising bc I live in upperstate NY and in general vitamin D deficiency is just one of the things that comes with living here. I was put on an eight week course of vitamin D at 70,000 IU once per week. More recently I have been taking just under 4,000 IU daily - so, not a very high dose, right around what is normally recommended as a safe daily dose. but comparably speaking I used to not take any vitamins at all so this is a big daily change. I had a bunch of blood tests done when I first went to my Dr with my symptoms, and she tested me for all sorts of stuff. I wish I had the paperwork! I hadn’t even thought to ask for copies of the results at the time. I do remember that my Lyme test came back negative, and I also tested negative for various thyroid issues, which my Dr was sure was the culprit. As for the rest, I honestly don’t know if I’ve been tested for everything. After reading through the forum some, I’m going to call my doctor on Monday and request a copy of my blood test results to be mailed to me, and on my follow-up appointment with my neurologist on the 21st I’m going to bring up the subject of the further testing you mentioned as well as ask whether or not we can continue to attempt to rule out other sources of the symptoms. I didn’t say anything at the time because the doctor seemed very, very sure. They said verbatim, “These are textbook MS lesions and symptoms, they couldn’t be more perfect for the diagnosis. (like... ok... it didn't feel that perfect, lol) I would say you don’t need to have a spinal tap done, there’s no reason to put you through that.” Which of course, I appreciate the sentiment, but I would also like to completely rule out every other possible cause of the symptoms I’ve been having for the last few years. Thank you for the reply! You’ve given me lots of food for thought! I’m definitely going to investigate further to make sure that all other potential causes have been completely ruled out.

[lyndacarol]

Over the summer I was diagnosed with a vitamin deficiency, specifically I was severely lacking in vitamin D. Not surprising bc I live in upperstate NY and in general vitamin D deficiency is just one of the things that comes with living here. I was put on an eight week course of vitamin D at 70,000 IU once per week. More recently I have been taking just under 4,000 IU daily - so, not a very high dose, right around what is normally recommended as a safe daily dose. but comparably speaking I used to not take any vitamins at all so this is a big daily change. I had a bunch of blood tests done when I first went to my Dr with my symptoms, and she tested me for all sorts of stuff. I wish I had the paperwork! I hadn’t even thought to ask for copies of the results at the time. I do remember that my Lyme test came back negative, and I also tested negative for various thyroid issues, which my Dr was sure was the culprit. As for the rest, I honestly don’t know if I’ve been tested for everything. After reading through the forum some, I’m going to call my doctor on Monday and request a copy of my blood test results to be mailed to me, and on my follow-up appointment with my neurologist on the 21st I’m going to bring up the subject of the further testing you mentioned as well as ask whether or not we can continue to attempt to rule out other sources of the symptoms. I didn’t say anything at the time because the doctor seemed very, very sure. They said verbatim, “These are textbook MS lesions and symptoms, they couldn’t be more perfect for the diagnosis. (like... ok... it didn't feel that perfect, lol) I would say you don’t need to have a spinal tap done, there’s no reason to put you through that.” Which of course, I appreciate the sentiment, but I would also like to completely rule out every other possible cause of the symptoms I’ve been having for the last few years. Thank you for the reply! You’ve given me lots of food for thought! I’m definitely going to investigate further to make sure that all other potential causes have been completely ruled out.

Since you have been diagnosed with a vitamin D deficiency, I hope your doctor has continued to monitor your level. (Your plan to call your doctor and request copies of your blood test results is very smart.); I have read that the desired level for most people is 50-70 ng/mL, but I have heard that for people with MS it is more desirable to maintain a level close to 100 ng/mL.

As you know, your daily 4000 IU dose is not considered especially high these days. It may not be enough to maintain your targeted level. This is the reason your doctor needs to keep testing and keep an eye on it.

It was good that your doctor initially tested for thyroid issues – this can be the root of the problem for some people with your symptoms.

Doctors often seem to have all the knowledge and all the answers… But they do NOT! Remember: you know your body best.

As for a spinal tap… (Many people here, including me, have NOT had a spinal tap.) Even positive results on a spinal tap do not PROVE that you have MS – there is no conclusive test for MS.

[littlestbabie]

The fact that there's no designated test has actually been freaking me out lately, I guess bc no one wants to be diagnosed with MS, myself included, and I'm still somewhat holding onto hope that it was a misdiagnosis. I was already planning on bringing up my concerns to the neurologist at my next appointment, but now after your replies I'm feeling more annoyed than anything else! Why would they not have made more of an effort not to eliminate any other further potential causes for the symptoms I was experiencing? Potentially bc as my dr said, he's very sure about the diagnosis. But I've been reading up on MS diagnostics a lot more, and everything I've read included something about the rampant misdiagnosing that goes on with this disorder. In Europe it's something like 4 out of 5 people who were previously diagnosed with MS don't actually have it! That idea terrifies me. When I was diagnosed, I was relieved to have an explanation for why these seemingly random bouts of physical difficulty were happening to me. But that feeling of relief very quickly goes away when I think about the possibility of being misdiagnosed and just continuing to struggle through my symptoms. When I first started having symptoms I said very often "I just know something is wrong." I wish I had listened to that gut feeling, even after several ER doctors told me repeatedly that there was nothing they could do but send me home with some anti-inflammatory medication and advise me to see a chiropractor and wait it out. Obviously something was wrong, and it still feels like something is wrong. I very much wish there was some way to unequivocally prove that I have MS even with the diagnosis, or potential diagnosis, 'Having MS' still feels like a very ambiguous thing to be labeled under.

[lyndacarol]

The fact that there's no designated test has actually been freaking me out lately, I guess bc no one wants to be diagnosed with MS, myself included, and I'm still somewhat holding onto hope that it was a misdiagnosis. I was already planning on bringing up my concerns to the neurologist at my next appointment, but now after your replies I'm feeling more annoyed than anything else! Why would they not have made more of an effort not to eliminate any other further potential causes for the symptoms I was experiencing? Potentially bc as my dr said, he's very sure about the diagnosis. But I've been reading up on MS diagnostics a lot more, and everything I've read included something about the rampant misdiagnosing that goes on with this disorder. In Europe it's something like 4 out of 5 people who were previously diagnosed with MS don't actually have it! That idea terrifies me. When I was diagnosed, I was relieved to have an explanation for why these seemingly random bouts of physical difficulty were happening to me. But that feeling of relief very quickly goes away when I think about the possibility of being misdiagnosed and just continuing to struggle through my symptoms. When I first started having symptoms I said very often "I just know something is wrong." I wish I had listened to that gut feeling, even after several ER doctors told me repeatedly that there was nothing they could do but send me home with some anti-inflammatory medication and advise me to see a chiropractor and wait it out. Obviously something was wrong, and it still feels like something is wrong. I very much wish there was some way to unequivocally prove that I have MS even with the diagnosis, or potential diagnosis, 'Having MS' still feels like a very ambiguous thing to be labeled under.

There is always the possibility of a misdiagnosis; on the other hand, the diagnosis of MS may be correct for you – a proper investigation must be done before you will have the answer. There are some doctors who enjoy being "disease detectives."

I believe that if you see a specialist about a problem, he will find a solution only in his specialty; if you see a neuro, he will only see the problem/solution in neurology. I have read: "doctors are experts in, and only test for, those parts of the body in which they specialize."

[kw202]

I wish I had listened to that gut feeling, even after several ER doctors told me repeatedly that there was nothing they could do but send me home with some anti-inflammatory medication and advise me to see a chiropractor and wait it out. Obviously something was wrong, and it still feels like something is wrong. I very much wish there was some way to unequivocally prove that I have MS even with the diagnosis, or potential diagnosis, 'Having MS' still feels like a very ambiguous thing to be labeled under.

It sounds like you're distressed and wanting more clarity. Believe me I understand where you're at (I was just diagnosed myself on 1/4, after about two months of testing out the wazoo - my story here http://www.thisisms.com/forum/introduct ... 27058.html).

I read earlier that your neuro discouraged you from getting a spinal tap because it's not necessary to make the diagnosis. It's true that a spinal tap isn't necessary for a diagnosis. It's also not necessarily definitive for one. But diagnosing MS is about building up a record - excluding some things, noting markers in other places - and once the right boxes can be checked, then you've arrived at a diagnosis (either pro or con).

In my case, the spinal tap was the final thing that sealed my diagnosis of MS, combined with a myriad of blood tests and MRIs.

I know that your doctor said it's not necessary for the diagnosis, but if you think it would put your mind at ease, get it done. In my case, the tap was mostly an annoyance - a day off work (and then another one working from home), and of course all the associated worry. But I didn't get the dreaded spinal headache, and the procedure itself wasn't painful beyond the initial shot of lidocaine.

If you go ahead with it, the key to avoiding a spinal headache seems to be using a smaller needle for the puncture (you want a doctor who uses a less traumatic "sprotte" needle, which is what I had).

[littlestbabie]

i had my follow-up appt with my neurologist today! they went over my spinal MRI, and there were definite MS lesions present, none of which were active. So my diagnosis is official, and they had me sign paperwork to request coverage for MS medication from my insurance. I decided to go with Tecfidera and hopefully my insurance won’t give me too much trouble with it, since it is included in their covered medications list, it’s just not necessarily their #1 preferred MS medication (that’s Copaxone, just in case u were wondering). I asked my dr a bunch of questions & he reassured me multiple times that it’s not a misdiagnosis & that nothing else could be causing my individual set of symptoms. He did request that a repeat blood panel be done, mostly for my peace of mind & to confirm the previous results, and offered to set me up with an appointment for a spinal tap. But tbh I don’t want a giant freakin’ needle in my back, so I declined!

the dr said my prognosis is good considering they caught it at a relatively early point in the progression of the disease, but I do definitely have nerve damage and lagging reflexes in my lower legs, particularly the right. In fact after doing varying nerve & reflex tests, the attending physician & the neuro resident determined that my right side in general has sustained the brunt of the previous attack’s damage, as even my right arm & side are displaying less sensitivity and reactivity. Not a whole lot - the dr said it’s incredibly subtle, but still important to have in my chart for the sake of future comparisons to determine the disease progression. I’m still not thrilled abt the whole deal but I’m becoming more accepting, mostly bc i don’t really have a choice but also bc i’m pretty confident that i can perpetually kick my MS’s ass for the rest of my life. at my next appt my dr is going to give me a chart listing the types of vitamins & supplements he recommend i take, including the dosages. (that obviously depends on the results of my blood test) ^^

[kw202]

I’m still not thrilled abt the whole deal but I’m becoming more accepting, mostly bc i don’t really have a choice but also bc i’m pretty confident that i can perpetually kick my MS’s ass for the rest of my life. at my next appt my dr is going to give me a chart listing the types of vitamins & supplements he recommend i take, including the dosages. (that obviously depends on the results of my blood test) ^^

Well, I'm sorry you're joining us in this club none of us want to be in, but I know it's a relief to at least know what you're dealing with. I felt the same way.

That's definitely the exact right attitude. I believe in the power of positive thought and positive energy and it can only serve us both well to go forward confident in our futures. We create what we believe.

Please do read up on adequate blood serum levels for vitamins, especially vitamin D and B12. Often the "recommended" daily dosages, and serum levels, are not what is most protective for MS. B12 levels should be around 1000 ng/l for those of us with a neurological disease like MS, and vitamin D should be around 80-100 ng/ml. What levels of both vitamins you'll need to take daily to maintain those levels will require some trial and error and monitoring.

Considering that B12 deficiency can mimic MS, I'm assuming you've had that tested already? Vitamin D levels are also typically quite low when first diagnosed with MS. Have you had that tested either? I'm curious to know what your levels are, if so. And don't just trust a doctor to tell you that your level is "normal" - get copies of your tests and look for yourself.

All the best.

[Scott1]

Hi,

Get yourself checked for underlying infections. Whether they are involved or not is not the issue. Too many times the symptoms of infections mimic the symptoms of MS. The risk is everything gets lumped into a box called MS and you do not receive the treatment you deserve. Get checked for mycoplasma, Lyme, Borellia, Babesia and herpes family infections such as EBV. Also get a fecal examination as blood tests don't find everything. Vitamin deficiencies can be caused when infections scavenge nutrients before you get to them. No matter what supplements you take they will have a fed. Get rid of any underlying infections possible.

It's very sad that your grandmother also had MS but that does not mean it is hereditary. Observations have shown it occurs in clusters. Families tend to cluster. A relative with MS does not imply it is hereditary. Her path does not have to be your path.

With such a young child you will have plenty on your plate for the next two decades. Making energy to stay active is going to be a priority. It should be your main goal.
My thoughts on this are on page 1 here - http://www.thisisms.com/forum/regimens- ... 24019.html

There are quite a lot of people willing to share ideas so make sure you ask.

Regards,