Odd symptoms

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
Post Reply
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Odd symptoms

Post by saidiecat »

Hello everyone! I am reaching out on here to get some insight, advice or whatever words anyone is willing to offer. I've had a variety of symptoms over the years and I was keeping a record of them, however I had lost it not too long ago. So using some memory and detective work (and Facebook), I was able to compile my symptoms again to the best of my ability.

March 2013- I started having severe pain in both of my eyes and eventually, started getting blurred and partially greyed out vision. It was as if there were big grey blobs in the middle of my field of vision. I couldn't drive, could hardly work. I went to the eye doctor and she said my eyes were fine and suggested I see a neurologist. I was diagnosed with Optic Neuritis and that's when I first heard of MS. The neurologist suggested it as a possibility. I received a few MRIs of my head and the neurologist said there were a few spots on my brain and ordered a spinal tap.

April 2013- Received spinal tap and the test results came back negative. No sort of follow up was done and eventually this neurologist left town.

Fast forward to February 2015- I had an entire day where I was getting strange feelings in the back of my head such as tingling, numbness, etc. I was also extremely exhausted and weak. I could hardly make it up the two flights of stairs at my place of work without feeling like I ran a marathon. Eventually, this feeling got better.

November 16th, 2015- I woke up to the right side of my face completely swollen, it went away by the next day.

November 22nd, 2015- A painful, itchy rash appeared on my back, right side of ribs and ride side of abdomen. I had to see a back up doctor since my primary was out of town. He confirmed it as shingles, which was a shock to the nursing staff since I am only 31 years old. No treatment was done as the shingles were already pretty developed and they went away in about a week.

Now to the present, May 2016- One day I woke up with my eyelids twitching almost CONSTANTLY. I would sometimes feel twitches in other random parts of my body, but it was mainly my eyes. I went to an urgent care doctor and he suggested I try and drink tonic water. Tried, didn't really help. During this time, I was (and still am) extremely exhausted, like I was before. I feel like I have no desire to do anything simply because it's just too exhausting. My eyes have been twitching for going on 4 weeks straight. I also sometimes get sharp pains in my chest, mainly at night. I also get bad back pain, sometimes pain in my legs and arms and in my joints.

Now all these symptoms are so confusing, because I've read that some of these can be linked to MS and I've also read that they're not. I don't like my current primary doctor because any time I see him about something new, he adamant that it's just stress, but I'm really not all that stressed. I'm known to be a pretty optimistic person, so when I'm feeling deflated and exhausted like recently, my family thinks it to be strange. So I'm in the market for a new primary. Now, I do have an appointment with a new neurologist tomorrow, but before I went I kind of wanted to get people's input on what I've been feeling. So anything thoughts would be greatly appreciated!
User avatar
NHE
Volunteer Moderator
Posts: 6221
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Odd symptoms

Post by NHE »

Welcome to ThisIsMS Sadiecat. I'm sorry that you have found yourself here, but wanted to let you know that you've found a supportive community. Do you know what blood tests you've had?
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Re: Odd symptoms

Post by saidiecat »

I've had so many blood tests it's hard to keep track of them all. I did have my vitamins and such checked in 2012 and everything was normal. My cholesterol was a little high, but that's it. My B12 was a little low but still in normal range. It was 370. I'll probably end up getting a more recent test to see any changes, but I eat a lot of chicken, eggs and dairy. They tested me for lupus in 2013 which was negative. My doctor did tell me he was trying to rule as much out as possible, but in the end he couldn't tell me why I came down with the optic neuritis. Well, I'm on my way to my new neurologist so I'll update on how it went.
User avatar
lyndacarol
Family Elder
Posts: 3394
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Odd symptoms

Post by lyndacarol »

saidiecat wrote:I've had so many blood tests it's hard to keep track of them all. I did have my vitamins and such checked in 2012 and everything was normal. My cholesterol was a little high, but that's it. My B12 was a little low but still in normal range. It was 370. I'll probably end up getting a more recent test to see any changes, but I eat a lot of chicken, eggs and dairy. They tested me for lupus in 2013 which was negative. My doctor did tell me he was trying to rule as much out as possible, but in the end he couldn't tell me why I came down with the optic neuritis. Well, I'm on my way to my new neurologist so I'll update on how it went.
Welcome to ThisIsMS, Sadiecat.

I suggest that, when any tests are done, ask for your own copy of the test results – it is important to have the actual test result numbers. (Keeping your own file at home of these test results is better than relying on memory – at least that is the case for me.)

Nutritional status changes over time. Even if your vitamin D levels were "normal" in 2012, it is very possible to be deficient in vitamin D now. Some experts estimate that up to 95% of the American population is deficient in vitamin D; you could be one of these people, a good diet is not enough to maintain an optimal level of vitamin D.

Vitamin D deficiency is a possible cause of your symptoms – I hope this is one possibility your doctor "was trying to rule out." In my opinion, if your current primary care doctor is reluctant to order this simple vitamin D blood test for you, it is differently time to look for new primary. Hopefully, your new neurologist will order order the "25-hydroxy D" test for you; if not, ask your new PCP. (If you can't find a doctor willing to order this, consider ordering the in-home, one-time test from GrassrootsHealth, http://www.GrassrootsHealth.net – this costs about $70; it requires a finger prick, 3 drops of blood on the kit's special blotter card; after mailing in, results returned within a week.)
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Re: Odd symptoms

Post by saidiecat »

Thank you for your advice. I was actually able to get access to all my lab results from Quest Diagnostics and the last time my vitamin D was checked was also in 2012 and it was at 36 at that time.

I went to my new neurologist today and I just love her. She's very thorough and doesn't skip to easy conclusions, even if it might turn out to be the case. She's getting blood work for me and I should be getting tested for any deficiencies. I'm also getting an MRI and a EMG on the 17th. So I guess for now it's just a waiting game.
User avatar
lyndacarol
Family Elder
Posts: 3394
Joined: Thu Dec 22, 2005 3:00 pm
Contact:

Re: Odd symptoms

Post by lyndacarol »

saidiecat wrote:Thank you for your advice. I was actually able to get access to all my lab results from Quest Diagnostics and the last time my vitamin D was checked was also in 2012 and it was at 36 at that time.

I went to my new neurologist today and I just love her. She's very thorough and doesn't skip to easy conclusions, even if it might turn out to be the case. She's getting blood work for me and I should be getting tested for any deficiencies. I'm also getting an MRI and a EMG on the 17th. So I guess for now it's just a waiting game.
It is SO important to have confidence in your doctors. I am so glad to hear you seem to have found a good one.

I hope the bloodwork that your new neurologist ordered includes the 25-hydroxy vitamin D test. Your test result of 36 ng/mL four years ago is below the range of 40-60 ng/mL recommended by GrassrootsHealth (http://www.GrassrootsHealth.net).

If you are unsure that her blood work order included this vitamin D test, you might consider calling the office and confirming it; or even request that the test be added, if it was not already on the list to be done.
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Re: Odd symptoms

Post by saidiecat »

Just a bit of an update. I just got a call from my neurologist's staff. Apparently she's prescribed me prednisone and wants me to take it for a month.

I will be getting my lab work order before it goes to Quest Diagnostics, so I'll make sure it has the vitamin D test.
User avatar
NHE
Volunteer Moderator
Posts: 6221
Joined: Sat Nov 20, 2004 3:00 pm
Contact:

Re: Odd symptoms

Post by NHE »

saidiecat wrote:Just a bit of an update. I just got a call from my neurologist's staff. Apparently she's prescribed me prednisone and wants me to take it for a month.

I will be getting my lab work order before it goes to Quest Diagnostics, so I'll make sure it has the vitamin D test.
In addition to vitamin D3, have you been tested for a vitamin B12 deficiency? You may wish to read the following topic for more information. http://www.thisisms.com/forum/natural-a ... 24857.html
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Re: Odd symptoms

Post by saidiecat »

I haven't been tested for B12 since 2012, so I'll make sure that gets done too. Thanks for the info! I shall read up on it. :)
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Re: Odd symptoms

Post by saidiecat »

I just have to add NHE, off topic, but for some reason every time I saw your avatar I thought it was a weird space helmet or something... I just realized it's an orca and a moon or sun -_- LOL
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Re: Odd symptoms

Post by saidiecat »

Sorta semi unrelated, but man did I have a nasty fall yesterday! It was raining and I was running to my car, slipped and because my legs are weak I couldn't catch myself. So they gave out and I went down, face first, in ankle deep water. :cry: Ripped my pants, scraped my knee bad, got soaked, dunked my phone and all my belongings in water... was not a fun day. Though I'm still sore, I'm laughing about it now! LOL
saidiecat
Getting to Know You...
Posts: 10
Joined: Tue May 31, 2016 6:20 am

Re: Odd symptoms

Post by saidiecat »

Just thought I'd give another update... I got a copy of my MRI report and it doesn't sound too promising. Here's the concerning part: "Multiple foci of T2/FLAIR hypersignal intensities within the periventricular, deep and subcorticl white matter, nonspecific, nonenhancing, largest within the posterior left frontal lobe measuring 6 mm. Given frequency, findings could represent a demyelinating process, such as multiple sclerosis."

I'm not jumping to any conclusions, I know it could still be a number of things. I return to the neurologist on the 6th to discuss these findings and the results of my EMG. I will be getting bloodwork after that to test for other things and deficiencies. So, I'll update more when I can, but for now I'll try and stop my thoughts from going in every direction :S
Post Reply
  • Similar Topics
    Replies
    Views
    Last post

Return to “Undiagnosed”