New symptom out of the blue

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

New symptom out of the blue

Postby LisaH » Sat May 13, 2017 6:52 am

I decided to start a new thread on this so nobody would have to scroll through the other one. I'm having a new symptom that concerns me. I woke up yesterday morning with my neck and shoulders very stiff and painful. I had done nothing differently to cause this. The same thing happened this morning and when I stepped out of bed, my left ankle was so weak and painful that I couldn't bear any weight on it. I'm hoping that someone here might tell me if this could be related to MS in any way. Please no comments about my diet as I can't fathom that being the cause of this happening so suddenly.
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Re: New symptom out of the blue

Postby Snoopy » Sat May 13, 2017 9:23 am

Those symptoms are very generic and could have been caused by anything. Neck/shoulder stiffness and pain could simply be due to the way you slept, this is so common for everyone with or without health problems. Your ankle could be related so something the day before that was inconsequential at the time. I am not suggesting that is what caused those symptoms but they are also not necessarily indicative of MS.
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Re: New symptom out of the blue

Postby LisaH » Sat May 13, 2017 10:06 am

Snoopy,

I realize that symptoms that might be MS-related could be related to a vast number of other things. I was simply asking if it COULD be related. My original thread provided a lot of information about my health issues, some of which does point to the possibility of MS. Since I shared my VEP report -(hoping that someone would comment given that VEPs are often used in the diagnosis of MS) - my doctor noted that there was degradation since my previous VEP (2 months prior). I've noticed that replies here (though very few) tend to be more focused on making symptoms about anything and everything besides MS. Most people who arrived at this site have researched MS to some extent. They are well aware of the fact that the symptoms they're experiencing may be the result of something else. Is the point of the Undiagnosed forum to convince people that they don't have it? Perhaps a suitable subtitle for it would be "This is NOT MS".
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Re: New symptom out of the blue

Postby jimmylegs » Sat May 13, 2017 10:40 am

when coming in to read all you need to do is click on the item under the 'last post' column on the right and then there is no scrolling, and no context lost. personally it took 14 years for poor diet to manifest and when the last straw finally gave way, everything hit the fan fast and i was diagnosed inside a week. when working to correct, i've noticed improvements within days of making changes, sometimes within hours. that's just my experience though, i could be some kind of weird one off non human.
odd sx? no dx? check w/ dietitian
DRI=MINIMUM eg bit.ly/1vgQclQ
99% don't meet these. meds/lifestyle can affect levels
status can be low in ms & other cond'ns
'but my results are normal'. typical panels don't test all
deficits occur in 'normal' range
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Re: New symptom out of the blue

Postby Snoopy » Sat May 13, 2017 1:21 pm

Any symptom might be MS but not every symptom is MS.

LisaH, you need to go through the diagnostic process for answers. No one here or on any MS forum will be able to tell you if what you are experiencing is MS or not.

Is the point of the Undiagnosed forum to convince people that they don't have it?


Nope! However, it's pretty common to give canned answers to those that haven't been diagnosed. We're not Drs.

MS forums have been overrun with people who do an internet search on their symptoms and MS comes up and then they suspect/believe they have the disease, Drs./Neurologists are also seeing this. The majority that suspect they have MS end up not having the disease, a few of those people do get a diagnosis of MS.

At this point your MRIs do not indicate MS, the diagnostic criteria relies heavily on MRI evidence.

Multiple Sclerosis has a long history of being misdiagnosed and this is still the case.
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Re: New symptom out of the blue

Postby LisaH » Sat May 13, 2017 8:15 pm

Snoopy,

I realize that nobody here can diagnose me. I'm not an idiot. The description for this forum is: "This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed". It seems to me that those of us who have symptoms that suggest MS should be able to get feedback about those symptoms. Did I misunderstand the reason for this forum? It's quite possible that I have something else and only time and further testing will reveal that. You said "the majority that suspect they have MS end up not having the disease". How do you know how many people suspect that they have MS? If you could post a link to the site you obtained that from, I'd appreciate it.
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Re: New symptom out of the blue

Postby Snoopy » Sun May 14, 2017 6:05 am

LisaH wrote:You said "the majority that suspect they have MS end up not having the disease". How do you know how many people suspect that they have MS? If you could post a link to the site you obtained that from, I'd appreciate it.


I have spent thirteen years on MS forums and have seen this time after time with the last several years becoming worse. It's becoming rare to hear one of those people received a diagnosis of MS. For some people every symptom they have must be due to Multiple Sclerosis. Try reading other posts on the Undiagnosed forum and you will see what I am saying.

I am not suggesting you do or don't have MS but to suspect MS when, at this time, your testing doesn't indicate MS is premature. Maybe down the road what you are experiencing will turn out to be MS but maybe it won't. Giving information about other possibilities and the criteria for MS is standard but it becomes "shoot the messenger."

Those thing that can be similar to MS are: http://www.nationalmssociety.org/Sympto ... o-Rule-Out

Diagnosing MS: http://www.nationalmssociety.org/Sympto ... gnosing-MS
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Re: New symptom out of the blue

Postby LisaH » Mon May 15, 2017 8:46 pm

Thanks for sharing the links, Snoopy, even though I've read those before. And just for the record, I have no desire to "shoot the messenger".

I'm frustrated at this point because my neurologist wants to wait to see me after my follow-up MRI in July. She thinks it might provide more information that could affect my treatment. I'm experiencing more unusual symptoms that seem to come out of nowhere. I'll be moving fine one minute and then my body suddenly feels stiff like I've been sleeping on a board. It works itself out after awhile but happens again with no apparent trigger. My right hand is very stiff and painful right now but the rest of me isn't. I couldn't open my medicine bottle and had to ask my husband to open it for me. Arthritis, maybe? Does it come and go so quickly? I have no idea. The EMG/NCS that I had was done on my legs which revealed no peripheral nerve issues there, but I'm now having muscle twitches in my arms and upper back, too. There's another new symptom that could be related to my trigeminal (or occipital) neuralgia but I haven't read a connection to either when I try searching it. Late yesterday evening, the top of my head (left side) felt really sore, like I had bumped it or had my hair pulled hard. Neither of those things had happened. It was still sore when I went to bed but was no longer sore when I woke up. Again late this evening... the exact same thing is happening. I'm baffled and wondering what strange symptom might appear next. I'm hesitant to call my neurologist because she wants to wait for the MRI before seeing me. I don't want to seem like a pest or have her think I'm unwilling to wait for my next appointment. My new symptoms may or may not be related to MS, but if anyone here could offer feedback, I'd really appreciate it.
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Re: New symptom out of the blue

Postby ElliotB » Tue May 16, 2017 12:28 am

"Please no comments about my diet"

And what kind of diet are you following?
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Re: New symptom out of the blue

Postby LisaH » Tue May 16, 2017 6:31 am

ElliotB,

Why would you post a reply like that? What I'm experiencing (MS-related or not) may seem amusing to you, but it's serious to me. I was notified of a new reply here and this is what I read instead of helpful feedback.
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Re: New symptom out of the blue

Postby ElliotB » Tue May 16, 2017 7:01 am

Amusing? Not sure where that is coming from. I was just curious about what diet you are following but you certainly don't have to answer if you don't want to. Sorry, my intention was not to offend you. I truly wish you well and success in your quest for good health.

Have you had your vitamin B and D levels checked recently? Do you take nutritional supplements?
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Re: New symptom out of the blue

Postby LisaH » Tue May 16, 2017 7:18 am

You quoted me: "Please no comments about my diet" and then asked about my diet. Another member asked about that (in my other thread) and I answered as best I could. I apologize for taking your reply the wrong way. I'm not on supplements of any kind and haven't had my vitamin B and D levels checked. The neurosurgeon had blood work done because the cyst/tumor I have is flattening my pituitary. They checked cortisol, free T4, prolactin, TSH ultra sensitive, and somatomedin which I was told are within normal limits. I haven't been back to my gp since she referred me to the neurosurgeon. I've been referred to other specialists as this goes along and now it's just a waiting game with them. I'm not sure if I would need to return to my gp to have my vitamin B and D levels checked or if one of the other doctors would need to. I'm assuming they'll have me wait until after the MRI for that as well. I'll call today and find out.
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Re: New symptom out of the blue

Postby ElliotB » Tue May 16, 2017 9:25 am

A couple of quick/simple suggestions...

Get comprehensive blood work done, make sure you find out the actual numerical results of your Vitamin D and B levels.

Please keep in mind that there are about 400 illnesses that mimic the symptoms of MS, and something as simple as a Vitamin B deficiency can cause serious symptoms.

If you are not on a gluten free diet, consider going gluten free.

Good luck, and hope you are feeling better soon!
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Re: New symptom out of the blue

Postby lyndacarol » Tue May 16, 2017 9:48 am

LisaH wrote:I'm not on supplements of any kind and haven't had my vitamin B and D levels checked. The neurosurgeon had blood work done because the cyst/tumor I have is flattening my pituitary. They checked cortisol, free T4, prolactin, TSH ultra sensitive, and somatomedin which I was told are within normal limits. I haven't been back to my gp since she referred me to the neurosurgeon. I've been referred to other specialists as this goes along and now it's just a waiting game with them. I'm not sure if I would need to return to my gp to have my vitamin B and D levels checked or if one of the other doctors would need to. I'm assuming they'll have me wait until after the MRI for that as well. I'll call today and find out.
I agree with ElliotB, when he said: Get comprehensive blood work done, make sure you find out the actual numerical results of your Vitamin D and B levels.

The only way to know if you are deficient and in need of supplements is to be tested. It would be less expensive to see your GP and request this nutrient testing, but ANY doctor (neurologist, neurosurgeon, even your gynecologist) can order these tests.

Please request your own copy of the test results so that you have the actual numbers. Lab standards are often set too low… You need to know if you are "low normal" or "high normal" in the range.

Long-term deficiencies in either vitamin D or B12 can result in neurological symptoms; when these are allowed to go on too long, symptoms can become irreversible.
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Re: New symptom out of the blue

Postby LisaH » Tue May 16, 2017 10:03 am

Thank you both for replying. I'm waiting for a call back from my gp's office to see if they can send the blood work request in without seeing me. I rarely drive these days because of the side effects of the gabapentin. My husband's shifts at his job make it difficult to have him take me anywhere on short notice. If my gp won't agree to just order the tests, I'll call my neurolgist's office and ask. Hopefully someone will understand the situation and help me out. I'm curious to know if my health issues are related to something as simple as a vitamin deficiency. I always get a printout from my appointments to have my own documentation on everything.
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