Hey all, just back from our fishing trip to Cold Lake, AB and believe me...it is COLD!! Hubby caught a huge Lake trout (65 cm) and it looked like a small tuna! It fed 8 people with leftovers so it was worth it. I caught a lousy Northern Pike. :( Oh well, wasn't feeling well and wasn't able to give it my all.
Now, the problem I am having. The day or two before we left on vacation, I was in a store, walking down an aisle and all of a sudden it felt as though my left eye was going up and my right eye was going down and needless to say, all my vision was double and I felt really nauseous. This lasted about 3 minutes and then mysteriously went away leaving me feeling scared and very tired.
The day before yesterday, my hubby and I were looking at pics on the laptop and all of a sudden it happened again and hubby said my eye's both looked normal it sure didn't feel that way. Same thing again, left eye felt like it was going up, right eye felt like it was going down and it lasted about 2 minutes and then disappeared again leaving me feeling very tired.
In addition to this problem I have been having a lot of difficulty with what I believe is possibly vertigo? I feel light headed and nauseous most of the time unless I lie down and it seems like things are moving. At first I knocked it up to being on rough water in the boat but it has not dissipated since being in the boat day before yesterday and I have literally done nothing yet today other than have a bowl of cereal for breakfast and a coffee.
I did let my neuro know before I left about the first incident in the store but never heard back from him so didn't think it was relevant. Now that I have had two falls and lots of bruises I think I need to let him know that this is going on again. He mentioned at the appt. before last that an MRI would be done if I presented with any new symptoms and I have since been diagnosed with bladder problems by my urologist and am being treated. Now that I have this double vision/possible vertigo/nausea I think I need to see my neuro again and possibly need a new MRI. What are the thoughts of someone here in the know? Thanks for your help people...I am feeling about as bad as I did back in 2006 and that is not a good thing. :(
You must go back to this doc. This is the 2nd time w/this eye split bit if I'm remembering correctly? And, now the vertigo, so of course you are nauseous! I can't believe you made it through the boat ride/fishing trip.
Uh, you and your benign MS (anyone that knows Rena's story, will understand that one). Yes, definitely MRIs. I still feel they'll offer you treatment one of these days. I'm a bit ornery, Rena, so I want you to look them dead in the eye and tell them they'd better get you treatment already before you hand them their arsh, lol
Hugs to you girl, do the best you can with getting around w/out falling until you get back in there. They need to see you while this is happening.
So sorry to hear about your eyes splitting and the nausea. I know it well. I had vertigo for 3 months and I could feel my eyes moving even when others couldn't see it.
I went to a neuro-ophthalmologist who diagnosed 6th cranial nerve palsies. If I look down and to either the right or left I have double vision and nausea. Also, if I have too much sensory input, i.e. busy shopping mall, rush hour traffic, a noisy party, etc. I also have the vertigo and nausea.
Hello! I don't believe we have met, so here I am to say welcome! (although I can see you've been around for awhile with all those stars you have!)
I'm so sorry you're going through all of this. Vertigo or dizziness can be confusing to some people. Vertigo is more like the world is spinning around you and dizziness is more like nausea and feeling like fainting. People with MS do get the vertigo but they say like in 20% of patients (don't know the actual percentage on that) but mostly its dizziness and caused by what Ren says with cranial nerve damage. But no matter, you're experiencing something very awful. I had that a week and a half ago and it only lasted for seconds but it was an awful feeling. I'd lay down on my back and it seem to initiate it again and once I turned on my side I felt better. It seems to come in split seconds and goes away for me. Not a constant 24/7 thing which could be more vestibular (inner ear) issue -- but I doubt it.
You must go to the Neuro most definitely, but the same one who doesn't call back when you left a message? Hmmm..I'm quite weary with this one who doesn't bother calling back with such a symptom as this. Perhaps it may be time to move onto a different one? Or do you really like this Neuro?
Hi Rena! I'm so jealous of your "cold" lake! It's hotter than Hades here! We're looking "forward" to another week of this stuff at least, too!
It is definitely a new symptom, so I would say "yes" you sould contact your neuro about scheduling an MRI. Hopefully, your MRI machine is good enough for spotting lesions at the bottom of your brain where the cranial nerves are located, if that's what the problem is. From what I understand, lesions there are hard to spot.
Thank you for all your responses! Shelley...yes that darn "benign" MS...at it again! ha ha
Well I went to see my Neuro on Thursday in between seeing my Mom at the Mazankowski Heart Institute where she was admitted on Sunday! I seem to know our hospitals like that back of my hand now! By the way, Mom is home and feeling good...they had to change her beta blockers and it seems to be helping (thank God)!!!
Anyway, my Neuro said that because I have had the double vision before he doesn't really think of it as a new symptom but the vertigo is new. He is thinking that I may have an infection that brought this on so he ordered blood work and a urinalysis and we will see what that shows. He said that once he gets the results of those and if everything is fine he will order an MRI since I haven't had one since 2007. So we shall see what the outcome is and hopefully he doesn't decide on surgery for the TN...brain surgery scares the crap outta me!
So between getting home last Friday from vacation then Mom going in the hospital on Sunday and then day before yesterday I felt something in my tooth and when I put my finger in my mouth I came out with most of my right upper molar and it just shattered in my hand. This is apparently due to the dry mouth caused by all the meds I am on. So I will have to go to the dentise on Monday and have them dig out the rest of the tooth and I am NOT looking forward to that!! Is there anything in the world that MS doesn't affect I wonder?? Stupid disease :(
Lisa honey...if you look at my history you will find out just what I went through to get a decent Neurologist and so I am going to stick with him. Seems most of us have to go through the losers before we find the Neuro that is right for us. Apparently it was an oversight on the nurses part that I wasn't contacted prior to going on vacation and she has apologized which is more than I have gotten from anyone else that has made errors. So I guess I will go with the flow and hope for the best!
I will let you know what comes of this...hopefully not much cause I HATE Solumedrol and all it's horrible side effects...I will keep my fingers crossed that the double vision and vertigo with quietly slip away!! he he
Hey all! Hope everyone is doing well. I had my molar pulled yesterday and it went pretty well...well, as well as a tooth pulling can go I guess. I feel like Alvin the Chipmunk today! hehe Anyway, I haven't heard anything from my Neuro about the blood tests and I will follow up with him if I haven't heard anything by tomorrow I guess.
Now, some of you know that I have been on here for a loooonnnng time but lately have been in and out. I have a question and I feel like an idiot for asking because I used to answer a lot of questions here...stupid memory just don't work like it used to!!
I was lying on the couch last evening and all of a sudden the pain in my left leg was horrendous. I was a throbbing ache like I have never felt before. I tried to put my foot on the floor and it didn't help at all. I finally had to get up hoping it would help dissipate the pain and it did seem to after walking around for a while. The pain was not in any specific muscle but widespread throughout my leg. Would this be muscle spasicity do you think? I am concerned because of the other symptoms I have been dealing with lately and I have never had to discuss spasicity with him. He told me I was walking alright when I saw him last week...can this spasicity change from day to day? I have to apologize for my stupidity here but as I said, my memory stinks. Thank you in advance for any assistance here...I do feel like an idiot though because I used to know a lot of this info and it has decided to leave my brain for some reason! ha ha
I'm glad you are going for new imaging - but I feel more and more you are a victim of rationing - they are rationing the meds and not offering them to you! Boy, not so optimistic today am I? Just saying - MS is on your charts, you saw it - your spoken to as an MSer, and I'll not bring up the benign again.
What the heck they waiting on to start your meds!
If your bloods show ok he'll order an MRI? aaaah, more rationing!
Did I say what the heck are they waiting on to start your meds?
And, no imaging since 07 - w t f, hahaha
I truly don't think this is an issue of rationing, certainly not in the sense of the rationing which occurs in the NHS in the UK.
Rena, I recall you said you are covered as a dependent under your spouse's employer insurance plan, so even if an application for the MS drug program was denied based on not meeting its criteria, which is not akin to rationing, there is nothing stopping your neuro from prescribing have been it which you could claim under your spouse's plan, if your neuro really believed they would be helpful and effective for you.
I believe you've said your neuro has determined you have SPMS; this would rule you out of most DMDs for you as studies have failed to consistently demonstrate a statistically significant reduction in EDSS score in such patients.
An exception to this is Betaseron/Extavia. The Alberta MS Drug Program does cover SPMS patients for these particular DMDs, for patients who meet the following criteria:
"-have a diagnosis of secondary progressive multiple sclerosis with relapses:
---have had at least two attacks/exacerbations of MS during the previous two years. (An attack is defined as the appearance of new symptoms or worsening of old symptoms, lasting at least 72 hours in the absence of fever, not associated with withdrawal from steroids, and preceded by stability for at least one month. Attacks must be separated by a period of at least one month.); and,
- have an EDSS score of less than or equal to 5.5."
If you meet the above criteria, and believe you should be on Betaseron/ Extavia, bring this info to your next appt and ask why he is reluctant to prescribe it for you. He may have good reason to believe it wouldn't be effective for you and/or the the medicine would be worse than the disease in your case.
If you have a history of depression and that is the reason for his reluctance, you can still be prescribed the interferons with a waiver signed by a psychologist/ psychiatrist endorsing the treatment for you after they've done their due diligence in evaluating your risk of the depression returning.
If his reluctance is due to the fact that he that he doesn't believe your application for the provincial drug program would be approved and doesn't think you can bear the cost of a DMD, reassure him that you are covered under another plan, provided you are able to pay the co-pay if there is one.
These are a lot of entirely speculative 'ifs.' You need to talk to him and not leave his office until you are crystal clear on his thought process and rationale. As you know, the Canada Health Act guarantees medically necessary services to all Canadians. The system does not ration based on $$$ where medical necessity exists, which is in stark contrast to the rationing across the pond. You need to understand why he does not think a DMD is medically necessary for you.
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