Follow up to mri for results next week, worried about possible diagnosis

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charlie_14
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 12/18/2015 2:59 AM (GMT -6)   
So a few months back I went to the ent because of a recommendation from my gp to see what is going on with the ringing in my ears that's happened for about a year now. While there, I happened to mention my long lasting balance problems so the ent ordered balance testing/vng. I thought it was from some minor thing like ear infections when I was younger, but it showed peripheral vertigo on my right side and central vertigo on my left side. As I understand it, it is unusual to have both, so research hasn't been much help. I was started on a beta blocker for migraines, but that and the tricyclic I'm on for sleep that's also used for migraines don't do much of anything for them and I had migraines every day for about a month until a couple weeks ago. After that, I got a referral for an mri with and without contrast which happened a couple days ago, with the results being shown at my follow up nest week.

All of this is stressful enough, but my symptoms that have happened since my vng tests in October are what are troubling me. My balance has always been bad (can't ride a bike, go down stairs one at a time, can't look at the sky without feeling like I'm falling), but lately it's been worse and a bit more like the definition of vertigo and things looking like they're moving. I've had ear pain and face pain on the same side, one day extreme enough I almost went to the emergency room. I've had tingling in my hands and feet and varying body temp that goes from hot to cold suddenly, often feeling a lot worse when hot. I had really bad fatigue for a couple weeks and felt exhausted as soon as I got out of bed and felt like someone was pushing down on my shoulders when standing and some muscle spasms and pain in random spots not just my joints. My back, knees, ankles, just joints in general hurt and crack more often. My vision has gotten a bit blurred, and I've had some double vision and one instance of my eyes shaking so much I couldn't see the alarm clock a foot away from my bed. My memory hasn't ever been the best, but I keep forgetting words for things or what I'm saying as I say it or why I went into a room or opened a tab. When I'm talking sometimes I forget what I'm saying or what I just said, leaving the thought unfinished or the grammar being butchered. I'm sure anyone I talk to has heard me say "what was I saying" or "what's that called" a lot lately. I'm probably leaving something out, but again, memory and brain fog is ridiculous.

So, I am not really looking for a diagnosis on here, I know that's not really possible. I'm just wondering if this sort of stuff sounds like what happens with ms in general or in younger people with ms (I'm only twenty). I know having migraines and headaches probably complicate the issue. So, any advice? whether if it's advice for dealing with what the results of the mri could be, getting diagnosed, anything really.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 240
   Posted 12/18/2015 9:33 AM (GMT -6)   
Hello Charlie_14,

If you take medication(s) it's always a good idea to research and be aware of the possible side effects. All over the counter medications, vitamin/supplements, and prescription medications have side effects. The side effects, for some people, cause "symptoms" which then makes us think we have another health issue. Drs. aren't always good about discussing side effects of the medications they prescribe so it's left up to us, the patients.

A good starting resource to check medication side effects is MedlinePlus: https://www.nlm.nih.gov/medlineplus/druginformation.html

If you find any of your symptoms are listed as a side effect of a medication and your symptom(s) started sometime after starting the medication then please speak to your prescribing Physician about a possible connection.

Your vision problems should be discussed and evaluated by an Ophthalmologist as your eyes are their specialty.

At this point there is no way to know what may be causing your symptoms, so many conditions overlap one another with symptoms. It might be MS, but it might be something else. All you can do is try and remain calm and let your Drs. figure this out.

Take care.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

charlie_14
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 12/20/2015 10:57 PM (GMT -6)   
I know it will be better to wait a little and get more information from my doctor about what's going on, it's just frustrating waiting for it. Because of school, my mri ended up being two months later than my last appointment with the ent and the follow up a week later. I am sure the next appointment will be around the same amount of time away as before. I didn't think to look up the side effects of the medications I'm on, one for sleep from my gp and one from the ent to treat migraines. I think a couple of the side effects may be linked to what's going on, but not all of it and not to what intensity it's at, I guess. After going on a stress research binge after the results of the vng balance/ear tests, I've been stressed about it possibly being MS and the wait in between appointments and tests haven't done a lot to help it. Hopefully my doctor can figure it all out because I'd just like to know what it is, what could happen later, and how it could be managed/treated because not knowing what is causing it is stressful enough.

bluelyme
Veteran Member


Date Joined Nov 2015
Total Posts : 4713
   Posted 1/5/2016 10:19 PM (GMT -6)   
Do not take idk for an answer. I thought it was cmt or als .i also have cpn..symptoms alot like you. .look at www.cpnhelp.org. ...also compounds with lyme. ..good luck.pcp nuero cardio endo and put pieces but it was found looking at blood...testing is very unreliable lots of politics. ..2 neg ative the false positive . All along had it

charlie_14
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 1/8/2016 5:27 PM (GMT -6)   
Well, I got the results from my mri and it showed "scattered patchy t2/FLAIR hyperintense lesions in the superficial and deep subcortical white matter" and "inferior cerebellar tonsillar ectopia", the latter of which my neurologist says is not a big deal, especially since it doesn't block CSF flow or seem to cause any sort of compression. When I saw the mri images, I could barely even see it, though I know I don't have any sort of background to know if what little did show means something. My neurologist seems to think it is MS, he ordered a lumbar puncture for next month and did a little overview of what it is, how it's treated, how my symptoms (along with the exercises he did at his office) indicate it, etc. I'm not terribly worried about it, mostly because I've figured it was this since a few tests ago but didn't really have any proof of it other than research that I did to see if I could find out what it is since I had a long time between appointments. I am kind of worried about the symptoms and the progression though because I don't really know what my normal is vs when it is causing symptoms or an exacerbation, and if this is my usual then I can't really imagine how bad an exacerbation can be. I've started a new migraine med to see if that helps with those, and I am hopefully getting new glasses soon to help with the blurry vision, but the other stuff I don't really have anything for even though it's all still causing problems. My general symptoms seemed to have gotten worse over the last few months, and have not really gotten better over winter break from college when I've been able to sleep more, so I'm wondering how this semester will go since one of the classes I'm in is a longer walk and has the strictest attendance policy.

charlie_14
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 1/8/2016 5:31 PM (GMT -6)   
Clarification: my neurologist seems to think the symptoms and the lesions are caused by ms, and the tonsillar ectopia was the thing that was hardly noticeable on the mri, not the lesions. the lesions were visible once they were pointed out. and i know that a lumbar puncture can be bad for people with tonsillar ectopia, I'm guessing for when it is lower or is symptomatic, but my neurologist didn't seem to be concerned with that.

francopo
New Member


Date Joined Jan 2016
Total Posts : 8
   Posted 1/10/2016 4:37 AM (GMT -6)   
I all
i'm Diagnosed with Multiple Sclerosis in 1988.
Research on MS is making great strides. It 'was discovered in Italy by Profs. zamboni that CCSVI is a slowing of the blood in the jugular veins. It is assumed that this has something to do with ms.In now being studied worldwide.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 240
   Posted 1/13/2016 10:46 AM (GMT -6)   
Hi Charlie_14,

I am sorry that it appears you are on your way to a diagnosis of MS sad

When having MS having symptoms are normal. A remission in MS can be complete (no symptoms) or partial (residual symptoms) with partial being the most common. There are medications to treat the disease (Disease Modifying Therapies), medications for symptoms (Symptom Management) and steroids for exacerbations.

I hope all goes well with the Lumbar Puncture and if you so chose please check back in to update and of course ask any questions.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

francopo
New Member


Date Joined Jan 2016
Total Posts : 8
   Posted 1/14/2016 4:07 AM (GMT -6)   
Hi Charlie
sty calm, make lumbar punture and then verificade all .
Rimember that there are so much opportunitis today

charlie_14
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 2/12/2016 10:48 PM (GMT -6)   
Well, first try of the lumbar puncture had to be stopped before they could get any of the csf to test because it hurt way too much to actually continue all the way with the test. The stuff used to numb the area didn't even numb it enough to make it not hurt when my neuro pressed against my back to find the space to go in at let alone insert the needle, and it hurt way too much when they were trying to get to a spot so they could get the csf with the needle to continue it, so I have to get the lumbar puncture under fluoroscopy in a couple weeks with hopefully better anesthetic.

Snoopy
Regular Member


Date Joined Sep 2015
Total Posts : 240
   Posted 2/17/2016 5:57 AM (GMT -6)   
Hi Charlie,
charlie_14 said...
so I have to get the lumbar puncture under fluoroscopy in a couple weeks with hopefully better anesthetic.


I'm not sure why your Lumbar Puncture wasn't done under Fluoroscopy to begin with. The old "hunt and peck" (my terminology :-) ) isn't usually done. That's how mine was done, but that was back in the dark ages :-)

I hope your next Lumbar Puncture goes much more smoothly.
Diagnosed with Multiple Sclerosis in 1985
PTSD diagnosed Feb 2004 (PTSD since age 2), Anxiety/Panic attacks secondary to PTSD.

charlie_14
New Member


Date Joined Dec 2015
Total Posts : 11
   Posted 4/1/2016 7:05 PM (GMT -6)   
It's now 5 weeks, close to 6 weeks after my lumbar puncture and the results still aren't back yet for some reason. I don't know if the hospital I had it done at is just taking a long time, or if they had to send it somewhere and it's taking a long time, or if it got lost or what but five weeks is way longer than I thought it would take. Honestly don't know what the issue is because I'm stuck on campus at college and my parents have supposedly called my neuro's office a couple times asking about it but all they tell me is that the people at the office say that they'll call when the results are in.
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