Not (yet) diagnosed, but we're still searching.

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.

Not (yet) diagnosed, but we're still searching.

Postby friendgirl » Sat Sep 08, 2012 7:31 pm

Hi! I'm 25 and I'm not diagnosed yet. I don't know what I have. But all the symptoms point to MS.
Right now, I'm having a lot of symptoms that are hindering my mobility. Standing up is good for maybe 30 minutes if I'm lucky, and then I topple over. Today, my arm muscles have been in a lot of pain and fatigue, and sometimes my leg muscles. (This isn't a complete list of my symptoms - I'm posting that later.)
My appointment is on the 18th. I don't know what's happening to my body, but I know that it's bad, and that I'm scared, and I definitely can't return to work because I can't stand for more than 30 minutes.
My mom had MS and her onset looked exactly like this, which is what got me worried. This episode started after i took a long walk in the heat.

What i'm looking for is to connect with other people with MS, particularly with mobility issues.
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Re: Not (yet) diagnosed, but we're still searching.

Postby friendgirl » Sat Sep 08, 2012 9:41 pm

i'm considering that i could just be anxiety. if the doctor says no, i'll follow it. but i hope she has an answer for the mobility stuff, and doesn't just dismiss me.
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Re: Not (yet) diagnosed, but we're still searching.

Postby NHE » Sat Sep 08, 2012 10:05 pm

friendgirl wrote:i'm considering that i could just be anxiety. if the doctor says no, i'll follow it. but i hope she has an answer for the mobility stuff, and doesn't just dismiss me.


Welcome to ThisIsMS. It's just my opinion, but I do not think it would be productive to offer that suggestion to your doctor. Sometimes it's best to let them evaluate the variables rather than push them in a direction where you actually could be dismissed. There's been a long history of patients having problems consistent with MS being described by their doctors as "hysterical," i.e., it's all in their head. It's best to avoid that label. I think, at this point, it's probably too early to say one way or the other if have MS. However, with your family history, it's something that should be evaluated.

NHE
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Re: Not (yet) diagnosed, but we're still searching.

Postby friendgirl » Sat Sep 08, 2012 11:24 pm

i'm afraid they'll do that anyway. should i bring a friend in case they dismiss me?
my thighs went numb again tonight. (been happening for a year- i always it's just cause i am fat.)
i'm always afraid i /am/ making it up after a horrible flare-up. i just don't want to be told that nothing is going on. or 'just anxiety'. right now i'm having trouble walking. i keep dropping bowls and plates for no apparent reason (they weren't slipping) and my arms, oh my god my arms.

the left side of my head falls asleep, and so does my ear.

i've always had a habit of falling on flat surfaces (since i was 18), and the 'pins and needles' used to need to be triggered but now i just need to sit down, or take a bath.

i'm afraid they're just going to tell me it's a combination of fat and anxiety and to lose weight (but i can't exercise too much bc of pan- i have one dance class that i go to because i olove dance- even though it's becoming extremely painful- especially ballet. and no, i'm not good at it.)

the fact that i'm forgetful has never occurred to me. but i'm not just cute ditzy girl forgetful. like, i have memory gaps. they've only started in my twenties. but i lose things. valuable things. a lot. because i have this habit of forgetting things. cell phones, ipods, keys. journals. pure. literally.....if its small, i will lose it.
i also don't have a timeline memory anymore. memory questions irritate me. i can tell you about my cat, or what happened on doctor who tonight, but i can't tell you any significant date or time thing. people have quizzed me on it but i literally frustratingly cannot create a timeline.
i used to have a timeline, but now i don't. also my memory problems used to not be so bad.

today the pain and fatigue was bad. my arms ached the whole day, and my body was weak. not a lot of pins and needles, fortunately. that's the worst pain, literally, ever. (when it happens in my legs, literal paralysis happens and it's scary. it usually happens when i'm around other people, too.) just a tired feeling- like my muscles wanted to give up the ghost. and an ache.
legs seemed content not to work - happy laying on the ground but dear god forgive me if i stood up.
i did manage to stand up for 20 minutes, though.

after the arm pain kind of went away, i thought....do i just have hypochondria? am i just one of those people who creates symptoms in my head? (symptoms have been recurring and going away since i was 18 and i'm 25, so....i hope not? i always blamed everything on Being Stupid or Being Fat.)

but then my thigh went numb again, this old trick, and i remembered i'm definitely not making all of this up.

but what....do i do if i just get told to lose some weight?
i....am not one to doctor shop, but (well, i've been trying off and on since i was 9 years old and developed an eating disorder- long story) to be quite honest with the pain and difficulty tstanding i'm not sure....how. (not that i don't want to lose weight. i'm not unwilling, but don't dismiss my symptoms as fatness.)
what if i just get told it's stress?
i don't have the financial power to just go to another doctor.
but....what if...that happens?
being dismissed is what i'm afraid of.
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Re: Not (yet) diagnosed, but we're still searching.

Postby want2bike » Sun Sep 09, 2012 7:18 am

The name we put on a disease is not as important as finding out what is causing the disease. I wouldn't pay a lot of attention to what these doctors have to say. They are the third leading cause of death in our country according to JAMA. If you can't find a holistic doctor it is up to you to figure it out. There are toxins all around us which make us sick. If we can determine what they are and eliminate them we have a chance to get better. One thing certain is our diet is key to our healing. You might want to check out the diet section on this site.

http://www.youtube.com/watch?v=ZAhu6oa_ ... ure=relmfu

http://www.youtube.com/watch?v=uccpChyP ... tube_gdata

http://www.youtube.com/watch?v=B0WWXzJu ... re=related
http://www.healingdaily.com/Doctors-Are ... the-US.htm

http://www.youtube.com/watch?v=HvA55xj8 ... re=related
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Re: Not (yet) diagnosed, but we're still searching.

Postby lyndacarol » Sun Sep 09, 2012 8:31 am

I take the liberty to repost this excellent suggestion from NHE to another new member:

Welcome to ThisIsMS. While your symptoms could potentially be due to MS, they could also be due to other, more treatable problems. One thing you could do is to document all of your symptoms and then take that to a doctor. With respect to finances, your county may have a health clinic that offers a sliding fee scale such that you could see a doctor at a very low cost. My county offers this and a doctors visit is just $20 while being seen by a nurse is just $5. There are also discounts for blood tests and prescriptions as well. In addition, there may be other groups that offer funding for low income patients should you need to be referred to a specialist.

NHE


Welcome to ThisIsMS, friendgirl. I offer you my standard action plan recommendation:

First, you may not have MS at all; it is a differential diagnosis – made by ruling out other possibilities. Very often, it is not easy or quick to diagnose. Before expensive tests even existed to diagnose MS, doctors used to diagnose MS on the basis of symptoms and if they temporarily worsened when the patient sat in a hot bath for a while (you mentioned your reaction to baths). IF you do have MS, you have found many supportive friends at this site. We come from diverse experiences and hold diverse ideas. We do not agree necessarily in our thoughts on MS – my personal suspicion is that excess insulin is responsible for many MS (or "neurological") symptoms; you will probably not agree with some of us either; we only ask for tolerance when we express unconventional ideas.

Second, I do not think that a specialist, a neurologist, is necessary right at the beginning of your investigation. I hope that you are comfortable with your GP or internist, that she is compassionate and enjoys being a "disease detective." A GP can order the tests necessary to rule out some possibilities. In the quiet of your home, write out a list of your symptoms and hand the paper to your physician at your appointment – your symptoms are REAL; they are not "all in your head". Start at the beginning with a thorough physical, baseline examination including blood tests for your cortisol level (elevated with stress), glucose AND insulin levels (these are two DIFFERENT tests – of course, I think the "fasting blood insulin test" is the most important and one of the least expensive tests; I suspect that your level is above the optimal 3 UU/ML; insulin is known as "the fat storage hormone" – your body cannot make fat without insulin), thyroid hormone levels (TSH, Free T4, Free T3, Reserve T3, and antithyroid antibodies), even a liver profile, and CRP (C-reactive protein) test (indicating inflammation). These tests are not all taken it once; your doctor would order them as she works through the list of likely causes for your symptoms. Ask for a copy of all your test results for your own file. Since I suspect insulin involvement and insulin resistance in skeletal muscles, this may be part of your muscle weakness.

Third, if you like to read and if you do have MS, start your reading with two books: "Multiple Sclerosis: The History of a Disease" by T. Jock Murray, OC, MD, and I think "The Multiple Sclerosis Diet Book" by Roy Swank, MD, PhD and Barbara Dugan is a good second book to read or even have. You may be able to get these through your local library.

Fourth, and most importantly, from this day forward, I encourage you to eat a healthy diet (a good idea whether or not you have MS). Many people find that diet can influence the symptoms of MS. In my opinion, this means a low-carb diet -- remove all sugar (including beer, wine, etc. which have sugar), remove all artificial sweeteners, including sugar alcohols like sorbitol, xylitol, etc. (These promote insulin production, too.), remove all trans fats (These also increase insulin.), and white flour, white bread, white potatoes, white rice (in fact, all carbs so far as possible) from your diet. Personally, I think that excess insulin plays a great part in MS. My suspicion is that Fatty Liver Disease is also involved, 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 interesting (http://www.TerryWahls.com).

And to your question:
but what....do i do if i just get told to lose some weight?

Insist upon the fasting blood insulin test!
We are here to listen…
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?"
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Re: Not (yet) diagnosed, but we're still searching.

Postby friendgirl » Sun Sep 09, 2012 4:57 pm

hi! i'm really poor right now, as in i don't have money at all. so i can't afford do anything fancy re:dieting. and i also have an eating disorder, so i'm going to work with my doctor on any foods to remove. i usually only get super-food-restrcity when i'm in an ed-relapse. those aren't fun. so while i eat as healthy as i can with no money, i appreciate the suggestions of diet adjustments but i'm going to have to be REALLY careful about that because my eating disorder is hell and it's currently in remission. (i've been living on vegetables and potatoes all summer, though, if that helps to how healthy i'm eating. please don't push diets/extreme food restriction on me and if you do i'll probably scroll past it because i don't want to relapse into my ED.)

i had to walk way too far today, and a few minutes ago i had to try and stand up. the attempt is laughable. my legs feel literally like lead and i'm going to park it here for the night, i think, and try not to walk long distances in the heat again.


i really DO appreciate your suggestions on what i eat, but please keep in mind you're talking to someone who has an eating disorder and advising me to restrict stuff from my diet is really really triggering. please stop doing that.
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Re: Not (yet) diagnosed, but we're still searching.

Postby jimmylegs » Sun Sep 09, 2012 5:43 pm

i had a super restrictive diet before i got diagnosed, i'm quite sure that malnourishment played a huge part in my getting sick - advice to remove entire categories of foods didn't make sense to me either. if one can term ultra-strict-veganism-to-the-point-of-serious-illness an e.d., then i had one. i had to forgo all my food related ideology and go back to the basics of what my body needed, not what i thought was best. six years in, if it helps i can definitely provide ideas on which healthy, nutrient dense foods you may want to INCREASE. fyi my diet was potatoes and veg when i was at my absolute sickest. if you can, boost omega 3 foods, zinc foods, and b12 foods for starters. i can send you links to more info or if you have questions and would rather chat privately, just pm me.
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Re: Not (yet) diagnosed, but we're still searching.

Postby friendgirl » Sun Sep 09, 2012 5:50 pm

" if it helps i can definitely provide ideas on which healthy, nutrient dense foods you may want to INCREASE." that would be very helpful, actually.
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Re: Not (yet) diagnosed, but we're still searching.

Postby lyndacarol » Sun Sep 09, 2012 6:37 pm

I apologize, friendgirl; I did not pick up on your sentence about developing an eating disorder at age 9. I do encourage you to eat as healthily as you can – lots of vegetables is a very good idea. I also try to eat lots of vegetables, especially dark green leafy ones like kale, spinach, etc.

I wish you all the best.
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Re: Not (yet) diagnosed, but we're still searching.

Postby friendgirl » Sun Sep 09, 2012 6:59 pm

@lyndacarol- it's not a problem. i am trying to eat healthier and have developed a love affair with zucchini. as soon as my legs feel up for it, i'm going to cook some up.
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Re: Not (yet) diagnosed, but we're still searching.

Postby jimmylegs » Sun Sep 09, 2012 7:02 pm

it's late for today but will send you some links and info tomorrow, fg :) ttfn!
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Re: Not (yet) diagnosed, but we're still searching.

Postby NHE » Sun Sep 09, 2012 10:00 pm

friendgirl wrote:i've been living on vegetables and potatoes all summer


In the last couple of years I started eating sweet potatoes. They have several advantages over regular white potatoes, e.g., lower glycemic index and higher nutrient density. For flavoring, I sprinkle some cayenne pepper on them.

NHE
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Re: Not (yet) diagnosed, but we're still searching.

Postby jimmylegs » Mon Sep 10, 2012 3:17 am

not to mention they're anti-inflammatory vs pro-inflammatory! for me sweet potatoes are a regular menu item :)
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Re: Not (yet) diagnosed, but we're still searching.

Postby lyndacarol » Mon Sep 10, 2012 3:23 pm

NHE wrote:
friendgirl wrote:i've been living on vegetables and potatoes all summer


In the last couple of years I started eating sweet potatoes. They have several advantages over regular white potatoes, e.g., lower glycemic index and higher nutrient density. For flavoring, I sprinkle some cayenne pepper on them.

NHE


I LOVE sweet potatoes! I sprinkle them with cinnamon.
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