In Limbo, feels more like a scavenger hunt

[Positivity]

Hi! So I am brand new here on MS World. I am a 34 yr old wife and mom of a 15 yr old daughter. We always have a lot going on between our daughter's swim practice, dive practice and her teaching swim lessons. My spouse is a counselor for troubled teens and I am the one that keeps everything running as smoothly as possible.

I think the first little symptoms started about two years ago for me. All in all I am dealing with numbness/tingling in both feet, up the left leg, in the left arm and twitches predominantly in the left leg and arm to include the right leg occasionally and the left side of my face sometimes. I have marked weakness in my left leg and left arm which has prompted my PCP to send me to my Neurologist. My gait is wobbly now and I have fallen just a few times, but thankfully I have not been injured-just embarrassed. I can't remember things like I used to so I have to write down everything, I'm always tired, and overly sensitive to heat which is a new development (I live in Florida). Sometimes my hands tremble/shake for no reason and sometimes I will get blurred and/or double vision.

Now most of these things I have blown off and thought, "oh, I'm just tired," or "I'm just stressed right now" but once my doctor noticed the weakness in my left side I couldn't ignore it any more.

I have migraine headaches (since I was 13) which I am taking Topamax 100mg BID for and I am amazed at how well that works to control them. Kudos to my Neuro for that one!

I have been diagnosed with Neuropathy, but that is very generic.

Test Results to Date:

05/2015 B-12 lab normal

2014 Thyroid/TSH/Free T4/Lyme Disease/B-12 all normal

12/2013 MRI C-Spine with/without contrast Loss of lordosis, disc space narrowing, spondylosis

12/2013 MRI Lumbar Spine with/without contrast normal



I have been a Medical Assistant for 10 years and decided to go back to school, then all of this started. I mention this only because I try really hard not to look to Dr. Google (Dr. You're Going to Die) for answers but I do know where to look for research. So far my research has led me to MS. I had been concerned about possible ALS, since there is a family history of it, but I really don't think that is the case- thankfully.

Since I am in Limbo right now I would value your opinions and advice! Thank you so much for taking the time to read through this and help me out. Figuring out what I am up against is really half the battle.

[SNOOPY]

Hello Positivity and welcome to MSWorld.

12/2013 MRI C-Spine with/without contrast Loss of lordosis, disc space narrowing, spondylosis

The above quote should be discussed with the appropriate professional. The findings on your c-spine MRI can account for your symptoms. Spondylosis is one of many conditions that can cause the same symptoms as seen in Multiple Sclerosis.

If you will click on the link below it gives you a list of other conditions that need to be ruled out. There is a section "Structural in brain or spinal cord" that lists Spondylosis as one of those other conditions.
http://www.nationalmssociety.org/Sym...ns-to-Rule-Out

[Positivity]

Update on Symptoms and a Question

Yesterday I was mowing the backyard. I was trying to take it really easy; working in the shade and taking breaks. I started to get a really tight feeling in my chest so I sat down, assuming I was beginning to have an asthma attack. It most definitely was not an asthma attack. I was breathing just fine. There was this pain (cramping and stabbing) that started at my spine and wrapped around to my sternum, all through my rib cage as though I was wearing a corset that was entirely too small. It was really painful. This squeezing/stabbing feeling then moved to my neck (while staying in my chest) and made me vomit for a few minutes. The "neck squeeze" only lasted for about a minute or two and was then gone. The muscles in my neck still feel rather tight today but more like I slept wrong rather than I'm wearing a scarf that is trying to kill me. The ridiculously too tight corset lasted for about twenty minutes or so but even now I still feel as though I am wearing a properly sized corset, good thing I like corsets. LOL So everything in the rib cage area is tight but not painful. This was really as NOT fun experience.


Question of the day: Could this have been what is called an "MS hug"? I have been starting to think that MS would explain my symptoms rather perfectly.

[SNOOPY]

Hi Positivity,

It's also a good idea to research medication side effects for a possible connection to symptoms. Topamax can cause some of the symptoms you are having.
http://www.drugs.com/sfx/topamax-side-effects.html

What is referred to as the "MS hug" is muscle spasms of the intercostal muscles. This is not unique to MS and can be caused by other conditions.

[Positivity]

[QUOTE=SNOOPY;1481485]

It's also a good idea to research medication side effects for a possible connection to symptoms. Topamax can cause some of the symptoms you are having.


Hi Snoopy! Thanks for the input, I have had some mild tingling sensations from the Topamax that are markedly different from anything I have ever felt before, but no other side effects. All of my symptoms started about two years ago, and the Topamax is new for me (only about three months). thanks though

[Positivity]

Had not thought of that!

[QUOTE=SNOOPY;1481479]



The above quote should be discussed with the appropriate professional. The findings on your c-spine MRI can account for your symptoms. Spondylosis is one of many conditions that can cause the same symptoms as seen in Multiple Sclerosis.


I was sent to a Neurosurgeon back when I had my C-Spine MRI done and he said that what I had would not cause my problems, however after what you shared with me, perhaps it is time for another look and a second opinion from my current neurologist (that I actually trust). I didn't really trust the surgeon I was seeing and was reluctant to go ahead and have any surgery at that time but I will be having an EMG/NCV done on Monday 8/17 so I will talk to my Neurologist about it then and see what he says. It's possible it may have gotten worse during the past 2 years as well. Thank you for the information! That will certainly help point us in the right direction, one way or the other.

[Teekybird]

It certainly sounds like your symptoms could be MS, but they could be other things as well.

One thing: you mention having blood work done for B12. Have you had your vitamin D levels checked?

Until you can get them checked, I'd assume that you are probably on the low side. I would recommend getting the vitamin D checked when you can. There is a link between vitamin D and MS. (Notice, I said "a link". It seems that nothing definite is stated, but some say that low vitamin D may be 'a' contributing factor in MS. Some say that people with MS 'tend' to have low vitamin D. No matter what people say or how they word it, there is some relationship between vitamin D and MS).

You had your last MRI done in 2013. That's approaching 2 years...things can change in 2 years... I'd see about getting another MRI if possible. With contrast is important, "MS Protocol." It's good that you have both the brain and spine to compare to from 2013 In my opinion, you should try to get an MRI of both again...

Also, until you get things figured out, another thing that I would say is probably good for 'anyone' but may be of added benefit if you 'did' end up being diagnosed with MS: Start Taking omega-3 fish oil supplements or else make sure you eat fish twice or so a week.

Final thing: fish oil is tricky in how they advertise it. What you really care about is the amount of omega-3. The label may say it is for 2000 mg of fish oil, but then it only ends up being like 200 mg of actual omega-3 oil. (Please note, the numbers I used are just examples. I don't feel like looking up some theoretical actual amounts).

Good luck to you. Keep us updated.

[Positivity]

Teekybird - No, I have not had my Vit. D checked that I am aware of. I will have to check on that. I didn't know there was a connection between the MS and Vit. D. Thanks for the info! I am looking forward to my EMG/NCV on Monday since it will help answer questions and rule things out, either way.

I do want to get updated MRIs so I will be talking to my Neurologist about that. I am just ready to figure this all out, maybe my patience is wearing thin too quickly.

Love your name by the way!

[Positivity]

Hope you are having a Peaceful Monday!

So I had my EMG/NCV test done today, which was really weird and rather uncomfortable at times. Good news is it came back totally normal. Bad news is, I didn't get to talk to my neurologist like I wanted to as he was very backed up and now I have to leave a message at the office and wait to hear back about what he wants to do now.

I mentioned already that I had this terrible, invisible corset that tried to kill me almost a week ago after I attempted to mow the grass. Well, this morning I was just a big bundle of ridiculous nerves so I thought a nice hot, steamy shower would do the trick. That was the worst idea ever! Half way through it I had to turn the temp. way down because the little corset demons came back. Thankfully they didn't get to tighten up the corset all the way like last time. I am hoping to get an MRI of the Thoracic spine and brain, as I really do not want to endure a lumbar puncture.

Any advice or suggestions from you lovely people?

[Teekybird]

Hi again,

I haven't had the test that you had done, but glad it turned out ok. I really don't have any more suggestions since my last time. Definitely talk to the neuro. I think trying to get current MRIs of brain and neck/spine would be excellent. Also, getting the vitamin D checked....normal non-fasting blood test; you should get the results back within 2 days....3 maximum; I've gotten results in as little as one day.


Good luck. Sorry you are in limbo.