Don't know if this is MS, but getting frustrated!

This is the place to ask questions if you have symptoms that suggest MS, but aren't yet diagnosed.
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jennymar
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Don't know if this is MS, but getting frustrated!

Post by jennymar » Sun Jan 06, 2019 7:31 pm

Hello everyone, and thank you all for letting me be part of your community. I would like to start by saying I do not know what is going on with me yet. I am 47 (turning 48 in 2 days) so I know it's not typical for MS to start at my age. However, my father in law started with his at an even older age than me. And recently, his daughter (my sister in law) started having symptoms and spots were found in her brain. She is in her early 20's. I don't want to make this too long so I'll get to it. Last May or so, I started waking up at night with panic attacks. Nothing new, I have dealt with them before. But these were different. While trying to fall asleep, I would jerk quickly awake and make a loud noise. I'm guessing these were myoclonic jerks, or sleep starts. My antidepressant meds were changed but this continued to happen. So then I wake up one morning with the muscles in my feet twitching like crazy. Also developed low back pain on the left side. Also, on occasion, my hands would start acting strange. When I went to go grab something for example, It would stop as if it was taking a long time to get the message. My balance beging to suffer. My legs feel like rubber. The twitching in my feet calmed down but still have occasional twitching. Tremors come and go. So over the net few weeks, I was referred to a neurologist and had a bunch of test done. Brain MRI _ good. VEP, normal. Some vestibular abnormalities, but I have not been told what it means. I have developed hyper reflexes and spasticity. Right at the time of my follow up, this neurologist closed his practice and I was given my test results and told nothing really showed up, go back to pcp and get referred to another neurologist. VERY frusterating!! I had noticed that when I collected all my paperwork, an MRI of the cervical and lumbar spine was suppose to get done. I pointed this out and was told Oh yeah. We'll re send the paperwork and have your results sent to your primary care. Well yesterday I picked up a copy of the report and the images on a cd. The report revealed stage 4 disk degeneration, bone spurs, and a couple of bulging disks. Spinal cord was intact. I was very puzzled because I thought for sure that I was going to have some spinal stenosis or some kind of spinal cord compression based on my symptoms. I decided to look at the MRI images myself. In the MRI of the cervical spine, I noticed part of my brain was in the picture. I scrooled through the images and I found what you see in the attached picture. WTF. I grabbed the cd with my previous brain MRI done almost 3 months earlier and found nothing. This bright white spot is in the cerebellum. It looks like a little bolt of lightning. What the heck! So I am wondering if I should point this out to my doctor. I'm afraid of being told, what are you doing trying to interpret your MRI!! Maybe this sounds familiar to some of you? When you have symptoms like this and go months without answers, I would't blame anyone for trying to do some research on their own. But I also am not a doctor, so I can't say for sure what this spot is. Likely the radiologist may have seen it and it is indeed nothing. But perhaps they did not notice because they were looking at my spine, not my brain? I just want to know if this might be a clue, or if I'm overreacting. Thank you all for reading this and letting me vent. I'm at my wits end here. I'm sure anyone who has endured months of symptoms with no answers can relate. Any imput would be appreciated! Thank you so much!! Image

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Re: Don't know if this is MS, but getting frustrated!

Post by Snoopy » Mon Jan 07, 2019 7:58 am

Hi jennymar.

Looking at and interpreting a MRI really does require a Radiologist to know what is normal and what isn't. The report is usually much easier to understand :-) Bulging discs can cause many symptoms, some neurological, and it might be a good idea to have your back evaluated by a Neurosurgeon or Orthopedist.

I would suggest researching your prescription medication side effects. Sometimes the side effects can mimic symptoms of other conditions. If the side effects of your medication(s) match the symptoms you are experiencing then please speak to your prescribing Dr.

You mention your in-laws having MS. I hope you are aware you cannot "catch" MS and there is no risk to you?

There is no symptom exclusive to MS and many conditions can cause symptoms similar to MS. Your MRIs, from what you have posted, do not indicate MS as a cause for your symptoms ~ that's great!

jennymar
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Re: Don't know if this is MS, but getting frustrated!

Post by jennymar » Mon Jan 07, 2019 8:58 am

Thank you! Yes I am well aware that I cannot get MS from my in laws. He has the progressive type so that is no good. I was on the antidepressant for 12 years when all this started. It very well could be my disks or bone spurs, my neck cracks often when Turn my head!

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Re: Don't know if this is MS, but getting frustrated!

Post by jimmylegs » Mon Jan 07, 2019 9:04 am

hi and welcome, jenn :)
can't blame you for venting; early days full of question marks are scary and frustrating.
i am not the right person to comment on your scans or the dx process in any detail.
what i do notice are the background items like panic and depression, and some of the symptoms like spasticity and twitching. these make me wonder if you have ever been referred to a preventive health pro, and what if any bloodwork has been done recently to examine key levels relevant to the msdx process (beware of 'normal'). do you have a sense of whether your diet and lifestyle are optimally healthy? some of the environmental contributions to ms are ones you can start to control right away, with or without a dx. might feel better to take some action on that side of things while the docs figure out the rest! :)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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Re: Don't know if this is MS, but getting frustrated!

Post by NHE » Mon Jan 07, 2019 12:41 pm

Welcome to ThisIsMs. What type of scan is that? With or without contrast? T1, T2, T2 Flair, etc.?

jennymar
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Re: Don't know if this is MS, but getting frustrated!

Post by jennymar » Mon Jan 07, 2019 1:33 pm

Hi! No contrast, sag T1 FSE Does that help? Jimmylegs, anxiety and depression have been an issue for years. But I do feel like I have it under control right now, considering. My only risk factor might be low vitaman D? Don't smoke. Use to be occasional drinker.

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Re: Don't know if this is MS, but getting frustrated!

Post by ElliotB » Mon Jan 07, 2019 2:08 pm

MRIs can sometimes be difficult to read, even for an expert. Was the neurologist you saw a MS specialist? If not you may want to consider seeing one since you seem to suspect MS BUT, keep in mind, there are many, many diseases that mimic the symptoms of MS and MS can sometimes be difficult to diagnose.

Also, the Updated McDonald Criteria is used as a basis in the Diagnosis of MS and to help reduce misdiagnosis. You may find the following informative for you:

https://www.nationalmssociety.org/About ... eed-the-Di

Good luck!

jennymar
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Re: Don't know if this is MS, but getting frustrated!

Post by jennymar » Mon Jan 07, 2019 2:33 pm

Thank you for the info! Is a referral needed for an MS specialist? I may look into that if no other reason for my symptoms is found. I was thinking myelopathy due to spinal stenosis was going to be what they found because my discs are so degenerated, but there does not seem to be any compression of the spinal cord. Very similar symptoms. Bloodwork does not show anything as well. I guess I am just going to have to be patient. I feel horrible when I read what others have been through before being diagnosed. I feel you.

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Re: Don't know if this is MS, but getting frustrated!

Post by ElliotB » Mon Jan 07, 2019 3:46 pm

"Is a referral needed for an MS specialist?"

Possibly/likely, but it depends on your medical insurance. Check with your PCP or your insurance administrator.

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Re: Don't know if this is MS, but getting frustrated!

Post by jimmylegs » Tue Jan 08, 2019 4:45 am

hi again :) re
jimmylegs, anxiety and depression have been an issue for years. But I do feel like I have it under control right now, considering. My only risk factor might be low vitaman D?
and
some of the symptoms like spasticity and twitching
to my eye all of these share at least one potential environmental common thread.

researchers have used magnesium deficiency in mice as a model of depression to test meds. anxiety is part of that picture.
spasticity and twitching can be linked to mag status also.
low d3 can be associated with low magnesium status, regardless of uv exposure.
low normal magnesium has also been documented in MS and in other chronic illnesses. i learned quite recently that out of all the essential metals found in myelin, magnesium content is highest.

when i had my serum mag tested first (after msdx), it was low normal.
healthy controls have high normal serum mag status.

working on building up my mag status settled down a prior lifetime of high anxiety.
magnesium got rid of spasticity, just one side effect of which had been impaired throat function, so bad i thought i would be found dead of asphyxia one day.
mag also helped improve my d3 dose response.
beyond that, it got rid of muscle pain i'd suffered periodically throughout adult life, thinking it was just normal (which it was, but didn't and doesn't have to be).

none of this is to say magnesium on its own is some kind of magic bullet; for my 2c, all essentials should be optimized to the best of our ability. but, of all the nutrients i have worked on, i would say magnesium is the one i can actually feel working day to day, compared to all the others. if you haven't already, could be worth taking a look at dietary mag intakes from healthy whole food and fluids. modern food and social environments don't make it easy for people to meet recommended daily intakes!
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!

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