Suspecting MS, Feeling Scared.

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

Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 2:41 pm

Hello everyone, I just found this site today and I am undiagnosed at this time. I came here because I have recently begun to suspect that I have MS. I have so much to share and to ask that I will do my best to keep this from turning into a novel! First let me say that although I know it's unwise, I have not been to a doctor for financial reasons, in several years now. I will be 49 years old on the 17th of Feb. of this year. When I did have a GP, it was difficult to find a decent one in the small town that I previously lived in. So, I have never gotten any answers to the symptoms that I have had over the years. I now live in Chicago and have my first doctor's appointment in years this coming Thursday, Jan. 9th.

My first indication that something was "wrong" was when I developed a slight head tremor in my early 20's. This was not overly noticeable at first but as the years have passed and over the last 3-4 years it has become very noticeable and troubling. I cannot hold my head still and the tremor makes me very self conscious and embarrassed. Along with the tremor I have had serious problems with fatigue on a daily basis. No matter how much rest or exercise I get this never changes. I am beyond tired, like my whole body is weighed down. I have had brief periods of time where I will feel better for a few days and then it's right back to the debilitating exhaustion. I have to rest between anything that I do and have become very sensitive to heat. If I even have the shower too hot, I feel like I'm going to wilt, or passout. Along with this I also have issues with numbness. This started in a very odd way, in both little toes of both feet. They went numb and stayed numb for days and then it just went away. This has happened with various fingers as well and more recently the lower left side of my face, near my mouth will go numb. It's the strangest feeling! I also have had periods of time where particular parts of my body feel like I have a sunburn on them, but of course, I don't. My upper thighs burn and often give this sensation, sometimes my upper back. My arms often go numb and wake me from my sleep because I cannot move them. My hands will feel swollen during this time but they aren't. It's all so confusing and crazy sounding, I know. In my early 20's when I first developed the head tremor, I also started to have problems swallowing and I have that issue to this day. I have to be very careful drinking and eating or I strangle and choke. I can no longer swallow most pills. Over the last 6-7 years I have had a great deal of trouble thinking. It's very hard to explain but it feels as if my brain has slowed down and stalls out on me when I am trying to speak or perform tasks. I find myself typing the wrong words, completely different than what I had intended to write. I also have a hard time "finding" words and expressing my thoughts. I am terribly forgetful, terribly. I will forget things sometimes within mere seconds or minutes. My long term memory seems fine. My vision is VERY blurry, but not all of the time. This will last for a day or sometimes several and then improve. It looks as if I am trying to look through oil or something like that, everything is a blur no matter my distance from it. My balance has been off for years and is getting worse. I run into doorways and stumble all of the time. I am having a VERY hard time going down stairs, and I live on the second floor of our building. I feel unsteady and like I am going to fall. My legs also get SO weak and tired! I had a spell last summer that lasted about a week and I honestly did not think I would make it up the steps. It took everything I had to lift my legs to walk.

I know this is very long and I have listed a ton of things but please keep in mind these have gone on and or developed over 20 plus years. I started trying to find answers on my own and everything keeps leading me back to MS. I realize that until I am able to find out one way or another there isn't a lot that I can do. But, to be honest I'm pretty scared about finally finding out. I want to know either way but it's scary. :? Anyway, I just needed to share this with someone. I don't want to worry my family and especially not being able to tell them what's actually going on with me. Does this sound like MS to you guys? Do you think my doctor will suspect MS and if not should I just tell her what I suspect and asked to be tested?

Thanks so much for reading this TOO long post and for any advice you may have!
~Saja~

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Re: Suspecting MS, Feeling Scared.

Postby jimmylegs » Mon Jan 06, 2014 3:07 pm

hi saja and welcome to the forum :)

to me, you sound like a poster child for magnesium depletion. I wonder if you have been on any particular medications over the long term? either prescription or just off the shelf?

ms patients often have quite low-normal magnesium levels, so at very least you might want to be sure to rule that aspect out. it's sooo easy to deal with. I have personal experience with magnesium deficit and have experienced many of the symptoms you describe. NO FUN esp the throat stuff. deadly.

PLEASE ask your doctor for a serum magnesium test. it will come back 'normal' but for optimal health you need to have levels at the very top of the normal range.

please also consider testing serum ferritin. iron deficiency is pretty much the most common deficiency going, and it is strongly linked to fatigue.
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Re: Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 3:55 pm

Hi Jimmylegs! Thanks so much for the reply. Ya know, funny that you said that because I have recently started taking magnesium citrate, 500 mg twice a day. Does magnesium depletion memic MS? Do you think that if that's what is wrong with me, that the tremor could be fixed, or perhaps damage has been done and I'm stuck with it forever? Thank you again for your advice!
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Re: Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 3:58 pm

P.S. The only thing that I have ever taken long term is allergy medication. I take over the counter diphenhydramine and have for years due to my allergies.
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Re: Suspecting MS, Feeling Scared.

Postby jimmylegs » Mon Jan 06, 2014 4:23 pm

heya :D you're welcome.

ah ha! what prompted you to start mag citrate? and, are you getting any gastrointestinal side effects taking 1000mg of mag citrate per day? (would probably give me the runs, tmi :S hehe)

magnesium depletion does not mimic ms per se. but it is one of the nutrient problems typically seen in the average ms patient. therefore these patients will naturally be likely to experience related symptoms. ms patients are low in a few other things too. typically serum vit b12, serum vit d3, serum vit e, serum ferritin, serum zinc, serum selenium, and serum copper are also worth investigating.

it's hard to say exactly what might be causing your tremor. but, if you do have a magnesium deficit it could be a contributing factor. might be worth ordering a serum magnesium test.

as far as correcting problems goes, found that magnesium deficit was pretty reversible compared to b12 deficiency for example. it took years for my magnesium levels to build back up once I realized what was wrong and started working on it properly :S I don't feel like my issues are 100% gone but it's SO MUCH BETTER now. now have you noticed any change in your tremor since you started high dosing magnesium? because if your symptoms are related to magnesium, I would tend to expect supplementation effects to be noticeable within a week. to a degree its effectiveness could depend what your diet is like. and b-vitamin status for that matter.

re the chronic allergies. might be worth a serum zinc test too :)
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Re: Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 4:34 pm

Oddly enough, the high dose of mag. has not done a thing to my stomach! I did read that some folks up their dose UNTIL they get that reaction and then taper it back just a bit to get the right amount for them. So, I would think that at that dose and no tummy upset it must mean I'm certainly in need of it, eh? I am not sure if it really improved the tremor at all, but I will say that I felt more relaxed in general. I have a lot of muscles spasms in my neck and upper back, I assume from trying to fight that dang tremor all of the time! I also supplement B12 and B6 and take a multivitamin. I'm going to take notes on the tests you have mentioned to take with me on Thursday, as well as my symptoms. I don't want to forget anything while I'm there. That poor lady is going to think I'm a nut with all of these symptoms, but I haven't been to a doctor in so long that the list grew over the years. =O
When did you get diagnosed? Did it take them a long time and did they have you to that spinal tap thing? That scares the socks off of me!
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Re: Suspecting MS, Feeling Scared.

Postby jimmylegs » Mon Jan 06, 2014 5:03 pm

glad to hear you have not been suffering due to the high dose :) hopefully you're absorbing lots! it's possible that it's going well because you do need it. b6, good to know. that's needed for magnesium utilization.

as for the tests. hope you get a cooperative doc who will order everything on your list :D

regarding the vit d test, be sure to specify serum 25(OH)vitaminD3.

and you might be wise to get a calcium assessment as well - needs to be balanced against magnesium properly.

great idea to take the symptom list to the doc as well.

I was dxd in 2006 and it was FAST b/c I was about to go on a long overseas trip and so the decision-making was pretty urgent. in the end I had to delay departure and shorten my trip from a year to 5 months :S

I DID have to get that nasty spinal tap thing. had a bad reaction. cross that bridge when you come to it - we have lots of info on that stuff here.

I would strongly recommend dealing with any nutrition problems first - might get the list of symptoms down to a more reasonable size. and I imagine that could make an eventual diagnosis easier for the doc.
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Re: Suspecting MS, Feeling Scared.

Postby lyndacarol » Mon Jan 06, 2014 7:06 pm

saja wrote:...First let me say that although I know it's unwise, I have not been to a doctor for financial reasons, in several years now. I will be 49 years old on the 17th of Feb. of this year. When I did have a GP, it was difficult to find a decent one in the small town that I previously lived in. So, I have never gotten any answers to the symptoms that I have had over the years. I now live in Chicago and have my first doctor's appointment in years this coming Thursday, Jan. 9th.

My first indication that something was "wrong" was when I developed a slight head tremor in my early 20's. This was not overly noticeable at first but as the years have passed and over the last 3-4 years it has become very noticeable and troubling. I cannot hold my head still and the tremor makes me very self conscious and embarrassed. Along with the tremor I have had serious problems with fatigue on a daily basis. No matter how much rest or exercise I get this never changes. I am beyond tired, like my whole body is weighed down. I have had brief periods of time where I will feel better for a few days and then it's right back to the debilitating exhaustion. I have to rest between anything that I do and have become very sensitive to heat. If I even have the shower too hot, I feel like I'm going to wilt, or passout. Along with this I also have issues with numbness. This started in a very odd way, in both little toes of both feet. They went numb and stayed numb for days and then it just went away. This has happened with various fingers as well and more recently the lower left side of my face, near my mouth will go numb. It's the strangest feeling! I also have had periods of time where particular parts of my body feel like I have a sunburn on them, but of course, I don't. My upper thighs burn and often give this sensation, sometimes my upper back. My arms often go numb and wake me from my sleep because I cannot move them. My hands will feel swollen during this time but they aren't. It's all so confusing and crazy sounding, I know. In my early 20's when I first developed the head tremor, I also started to have problems swallowing and I have that issue to this day. I have to be very careful drinking and eating or I strangle and choke. I can no longer swallow most pills. Over the last 6-7 years I have had a great deal of trouble thinking. It's very hard to explain but it feels as if my brain has slowed down and stalls out on me when I am trying to speak or perform tasks. I find myself typing the wrong words, completely different than what I had intended to write. I also have a hard time "finding" words and expressing my thoughts. I am terribly forgetful, terribly. I will forget things sometimes within mere seconds or minutes. My long term memory seems fine. My vision is VERY blurry, but not all of the time. This will last for a day or sometimes several and then improve. It looks as if I am trying to look through oil or something like that, everything is a blur no matter my distance from it. My balance has been off for years and is getting worse. I run into doorways and stumble all of the time. I am having a VERY hard time going down stairs, and I live on the second floor of our building. I feel unsteady and like I am going to fall. My legs also get SO weak and tired! I had a spell last summer that lasted about a week and I honestly did not think I would make it up the steps. It took everything I had to lift my legs to walk.

I know this is very long and I have listed a ton of things but please keep in mind these have gone on and or developed over 20 plus years. I started trying to find answers on my own and everything keeps leading me back to MS. I realize that until I am able to find out one way or another there isn't a lot that I can do. But, to be honest I'm pretty scared about finally finding out. I want to know either way but it's scary. :? Anyway, I just needed to share this with someone. I don't want to worry my family and especially not being able to tell them what's actually going on with me. Does this sound like MS to you guys? Do you think my doctor will suspect MS and if not should I just tell her what I suspect and asked to be tested?

Thanks so much for reading this TOO long post and for any advice you may have!


Welcome to ThisIsMS, saja.

First, you may not have MS at all, but there is a possibility; it is an exclusionary diagnosis - made by ruling out other possibilities. IF you do have MS, you have found many supportive friends at this site.

I hope you can find a good GP or internist there in Chicago, one who is compassionate and enjoys being a "disease detective." I tend to believe that if you see a surgeon about a problem, he will find a solution 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."

#1 Do take your timeline and symptom list to your Thursday doctor's appointment. She will be pleased that you came prepared. (I have highlighted some in your post – I also have the feeling of "sunburn" in my legs.)
#2 Discuss your list with your doctor.
#3 Discuss the following suggestions from the University of Chicago in order to investigate peripheral neuropathy. (The numbness that started in both little toes of both feet and in your fingers is called peripheral neuropathy.)

http://peripheralneuropathycenter.uchic ... ndex.shtml

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
Thyroid, liver and kidney functions
Vasculitis evaluation
Oral glucose tolerance test
Antibodies to nerve components (e.g., anti-MAG antibody)
Antibodies related to celiac disease (In view of the information below, I think it is VERY important to check for this gluten sensitivity.)
Lyme disease
HIV/AIDS
Hepatitis C and B


On 12/2/2013 Dr. Amy Myers, M.D. spoke about gluten sensitivity:
http://www.doctoroz.com/episode/gluten- ... t-epidemic

@4:00 Dr. Amy Myers, M.D., speaks on the newly-recognized warning signs of gluten sensitivity: headaches, migraines, inflammation causing brain fog (You described this as, "my brain has slowed down."), depression from nutrient deficiencies (zinc, iron, B vitamins, omega-3 fatty acids, vitamin D), joint pain & arthritis, and skin rashes.


In part 2 of his 7-part presentation on celiac disease, Gary Kaplan, D.O.,described the 4 forms of the disease:
http://www.youtube.com/watch?v=chjDo_pL ... qHjwF7ktRo

At 0:30 he says that the atypical/extraintestinal form includes minimal gastrointestinal symptoms AND may include:
iron deficiency/anemia
dermatitis herpetiformis
chronic fatigue (you described as, "I am beyond tired")
joint pain
infertility
neurologic symptoms (ataxia, neuropathies)
vitamin deficiencies
ADD
osteoporosis/osteopenia
autoimmune disorders - complete list available at http://www.aarda.org/
migraines

(Many of your symptoms parallel the author's symptoms):

http://celiacdisease.about.com/od/Glute ... l-Like.htm


I have no medical background; I suspect you have a degree of gluten sensitivity.
All the best to you. Let us know how it goes.
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Re: Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 7:23 pm

lyndacarol, thanks so much for all of the great info and advice! I will make sure to go in well prepared. From what research I have been able to do, this doctor sounds like a very good fit for me and if I am right, I think she will be very compassionate and helpful. I will keep you all posted on how my first appointment goes. I'm both nervous and hopeful that perhaps now I can at least begin the process of finding the cause, or causes of my symptoms. Thank you again, very much!
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Re: Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 7:33 pm

jimmylegs wrote:glad to hear you have not been suffering due to the high dose :) hopefully you're absorbing lots! it's possible that it's going well because you do need it. b6, good to know. that's needed for magnesium utilization.

as for the tests. hope you get a cooperative doc who will order everything on your list :D

regarding the vit d test, be sure to specify serum 25(OH)vitaminD3.

and you might be wise to get a calcium assessment as well - needs to be balanced against magnesium properly.

great idea to take the symptom list to the doc as well.

I was dxd in 2006 and it was FAST b/c I was about to go on a long overseas trip and so the decision-making was pretty urgent. in the end I had to delay departure and shorten my trip from a year to 5 months :S

I DID have to get that nasty spinal tap thing. had a bad reaction. cross that bridge when you come to it - we have lots of info on that stuff here.

I would strongly recommend dealing with any nutrition problems first - might get the list of symptoms down to a more reasonable size. and I imagine that could make an eventual diagnosis easier for the doc.



jimmylegs, you have been so kind and helpful. It is so nice to have people to talk to about this, it makes me feel better to not feel so alone in it.
I'm very glad that you got your diagnosis so quickly, I fear I probably will not be so lucky, so to speak. From what I have been reading, this could be a very long and stressful process. Yikes about the LP! I had a c-section with my last child, I have two grown girls, and it went terribly wrong when they gave me an epidural. I have some scoliosis in my lower back and I think that had something to do with it. That's why I fear the LP so much! I wonder, are there cases were they do not have to do that procedure? Wishful thinking on my part probably, eh? lol
I will certainly address any nutritional issues as soon as and if they are discovered. That would be nothing but a good thing no matter what the diagnosis! :smile: Thanks again, so much!
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Re: Suspecting MS, Feeling Scared.

Postby jimmylegs » Mon Jan 06, 2014 7:53 pm

no probs :) you could probably say 'no' to an LP if it came down to it. no ms test to date is conclusive. just one more item on a checklist. as yet there is no single test that is seen always in patients and never in healthy controls.
re the nutrient tests. ms patients tend to have low-normal nutrient levels while healthy controls have high-normal nutrient levels. so make sure you get your own copy of the results, even if they are 'normal'. then you can compare to average ms patients and average healthies to see where you're at :)
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Re: Suspecting MS, Feeling Scared.

Postby lyndacarol » Mon Jan 06, 2014 7:54 pm

saja – It sounds like you have found a very good doctor. If not, or if she wants to refer you to someone else to check out this gluten-sensitivity angle, you are fortunate to be in Chicago where Dr. Stefano Guandalini is medical director of the University of Chicago’s Celiac Disease Center: http://www.cureceliacdisease.org


On the subject of lumbar puncture (LP)… I have never had one. My MS diagnosis was made on the basis of my symptoms and my fourth MRI, which finally revealed lesions.
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Re: Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 8:10 pm

jimmylegs wrote:no probs :) you could probably say 'no' to an LP if it came down to it. no ms test to date is conclusive. just one more item on a checklist. as yet there is no single test that is seen always in patients and never in healthy controls.
re the nutrient tests. ms patients tend to have low-normal nutrient levels while healthy controls have high-normal nutrient levels. so make sure you get your own copy of the results, even if they are 'normal'. then you can compare to average ms patients and average healthies to see where you're at :)


That's very true, I could just say no! lol I suppose I will cross that bridge when and if I come to it. I don't want to get too worried about things that may not happen. I know you understand how stressful it is knowing "something" is going on but you have no clue what. I think it is very interesting that ms patients tend to be on the low-normal nutrient levels. Not that it is my answer but I have wondered why I might be mag. deficient, and I am certain that I am. Could be a piece of the puzzle. I guess time will tell. I will make sure to ask for copies of my tests that I have so that I can share them with you and compare to others. It does sound like diagnosing MS does take a lot of detective work! Although it is just the beginning for me, Thursday can't come quick enough for me. I'm pretty nervous about it, meeting a new doctor and laying all of these symptoms on the line. I hope she lives up to her rave reviews and can help me. Fingers crossed! I'm off for the night so I wish you a pleasant rest of the evening! I am so happy that I found this site! :-D
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Re: Suspecting MS, Feeling Scared.

Postby saja » Mon Jan 06, 2014 8:18 pm

lyndacarol wrote:saja – It sounds like you have found a very good doctor. If not, or if she wants to refer you to someone else to check out this gluten-sensitivity angle, you are fortunate to be in Chicago where Dr. Stefano Guandalini is medical director of the University of Chicago’s Celiac Disease Center: http://www.cureceliacdisease.org


On the subject of lumbar puncture (LP)… I have never had one. My MS diagnosis was made on the basis of my symptoms and my fourth MRI, which finally revealed lesions.


I am very pleased to now be in Chicago, I know there is much better help for me here. I'm glad to know that it is possible to NOT have to have the LP, it scares me so! If I might ask, what was the time length between your first and your definitive MRI? Did it take a long time to get your diagnosis? I have been reading about so many people who have had to wait very,very long periods of time before they got diagnosed. I truly hope that it does not take months or years for me since I have been having symptoms for years now. I would like to address whatever it is that is going on and hopefully improve my symptoms.
I will keep you posted on how the appointment goes. Thank you again, very much! Have a good night!
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Re: Suspecting MS, Feeling Scared.

Postby lyndacarol » Tue Jan 07, 2014 9:11 am

saja wrote:If I might ask, what was the time length between your first and your definitive MRI? Did it take a long time to get your diagnosis? I have been reading about so many people who have had to wait very,very long periods of time before they got diagnosed. I truly hope that it does not take months or years for me since I have been having symptoms for years now.


From my first MRI, it was two years (and two more "normal" MRIs) until my fourth MRI showed lesions. This seemed like a long time to me, but there are people who have waited MUCH longer for the diagnosis! In retrospect, I recognize that I had MS symptoms long before that first MRI; I dismissed them, attributing them to some simple things that had happened.
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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