9671341 tn?1443128711

1yr update still in limbo land

Hello all!!

It has been 13 months since my initial big episode that made me spiral down health wise. I have since had so many tests done and seen so many doctors. I had my general doctor saying my symptoms were from depression tried meds, physical therapist thought neck related from prior car accident, neurologist says migraines.  All of the insight on the mri of what the lesions could be from were ruled out besides migraines and MS.

I have gone to a phycologist for disability and I do not have depression no more meds for that. I am currently on Topamax for the migraines. I started at 25mg but seems like once my body got used to it they came back neuro upped. now on 75 for 3 weeks and headaches are once again back.

The symptoms I am still having are...

right side weakness
falling down stairs a lot ( have since moved to one floor)
when walking leg gets weak and gives out on me like at the knee
restless leg syndrome
memory loss
poor concentration

I also have esophageal spasms. 2 yrs ago I had it stretched. I think I may need another stretch soon.  

one thing that has still been of a big concern to me is my blood pressure. GP does not want to put me on meds which I am ok with in a sense because I want him to find the source of problem. My blood pressure use to always be 101/58  or like 97/ 56 was always low even when pregnant. but since the big episode in july last yr its been running like 135/100 or 145/112 my diastolic number is always crazy high. it just doesn't make sense to me.

For me I feel like Migraines is not the source of my symptoms because while on the meds and the headaches are gone I still have symptoms. however I do feel like some of my symptoms make the migraines feel worse for instance dizziness.

through out the yr of people telling me migraines are my issue I never once looked up how migraines caused lesions on the brain. so I decided to look it up. from what I remember reading( which memory is horrible these days) its from lack of blood flow.  So I decided to venture over to the migraine forum and scroll through their mri results and couldn't find anyone that had as many lesions as I do. many of those people have suffered with migraines all their lives and I have only had migraines for a yr. I know everyone is different but I just don't think it is possible for me to have several, I cant remember how many but too many for my liking.

I had an appointment set up to see neuro in sept. but he changed it to Nov. so my GP finally gave me a referral to go to Dartmouth Hitchcock I am going to call Monday and set up an appointment. they have sever MS specialists.  My GP is gonna order a sleep study. I'm hoping to do another work up of blood work since its been a yr. another mri its been a yr. I am pretty much gonna demand a LP.  

Sorry this is so long!!! I hope everyone is hanging in there!!

14 Responses
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12080135 tn?1453627571
Hi Tanya

Horrible to read you're still struggling.  I hope you find some relief soon.

MRIs are a wonderful addition to the medical kit bag, though not the magic bullet to diagnosis we'd like them to be. Migraines certainly do cause lesions - I've got a fair few from them but also quite a lot of others from MS too.

The difference is the type of lesions - they don't look the same as the cause is from different things.  MS ones also appear in fairly common areas in the brain as well as one the brainstem/spinal cord I.e. Central Nervous System. Did your neurologist talk you through the results of your MRI? Do you have the results write up report?

Quite often there are good clues the radiologist points out to the neurologist about what they can see. MS lesions shows demyelination ie the protective coating has damage. MS Society websites have some good simple info around this.
You could compare that to what you know about migraine lesions.
It might be a good idea however, to ask your neuro about the lesions they found, where they were, type etc if you haven't had that conversation though rather than trying to figure all this out yourself!!

Also, mention your biggest symptoms above that cause issue to you and let them weigh up all the data! The sleep study sounds a good idea as lack of sleep can cause memory issues, fatigue etc.
Raised blood  pressure can cause headaches, dizziness etc
It might be an unlucky combination of things.

If you want to ask specifically about the likelihood of it being MS that is your prerogative of course, there does seem to be lots of info pointing to other things, but for your piece of mind I'd ask those questions rather than worrying yourself silly and potentially adding to your headaches with stress.

Hold on, it's hard I know. Your bloods, current data etc might mean a LP can be avoided - not something to undertake if you don't need, and might leave you in exactly the same place.

Let us know how you get on and what they can say to you to answer a few questions perhaps.

Helpful - 0
667078 tn?1316000935
Sorry you are having so many issues. I was going to suggest a MS Specialist. I think a LP would be a good thing.

Helpful - 0
9671341 tn?1443128711
Thanks for your replies Alex and Rachel!

A couple more developments... No longer on effexxor for depression which GP thinks was contributing to some of my sleep issues which I aggree since that has been a new thing. So far so good on that. 4 days sleep slowly better.  He feels I don't need study done. It was the meds and yes I have restless leg syndrome.

So for my neurologist I called to do appointment but the way refferal was sent it was for a migraine specialists. I explained I didn't want that I wanted MS specialist. I had to talk to GP.

So I needed to make go in anayway so when I did I discussed this with him and he said he didn't put that in like that. But felt maybe that was a good way to go. He feels that she can look at my mri's and go over what's been going on and know whether this is all migraine related better then my current neurologist. And if not then she can just send me over to one of the MS collegues. He feels like at least my foot is in the door at Dartmouth Hitchcock.

Also I have been having some new eye things going on was really thrown off by it so called and went into eye doctor. Left eye pain. Like when I move my eye not so much right to left but up and down. Not extreme but painful. And also hard to explain at first but I guess it's just double vision. I was having a hard time explaining it to him.

He examined my eyes said they look healthy. He asked about the migraines and asked about what else was going on. In the end he said that he felt my current eye problems were not migraine related.

What do I do with this information? Anything? If I tell neurologist new symptoms and what eye doc said I feel like he will just shrug it off like oh he is just an eye doctor.
Helpful - 0
5112396 tn?1378017983
Did they at least offer you another anti-depressant? Cutting one off suddenly, especially without a plan on how to deal with on-going issues/symptoms is not a good idea, and I'd question a doctor who's on board with that. I say this as someone who's on venlafaxine/effexor for depression and also has MS.

There are so many other options that will have a side-effect profile your body can better manage. Seeing after your mental health is no less deserving than getting to the bottom of your other challenges.
Helpful - 0
667078 tn?1316000935
There are two eye problems with MS. Double vision and optic neuritis. If you have ever had optic neuritis the optometrist can see it when he looks at the back of the eye where the optic nerve is. Both eye conditions are neurological. Double vision from damage in the brain and optic neuritis from damage to the optic nerve. The eye doctor can also tell if you have double vision. Unless you have a really bad case of optic neuritis you just wait it out. That is what you do with most MS symptoms. You just wait for them to go away.

Helpful - 0
9671341 tn?1443128711
No there was no discussion of any other meds for this. for me I just feel like there was no help from the meds we have tried. I don't have depression but I do have anxiety issues. So we just opted to go off it and see how I do. Since my migraine meds also help with some stuff as well. Only time will tell I guess.

Plus I don't really like taking a lot of meds.
Helpful - 0
9671341 tn?1443128711
The eye doctor did not say if it looked like I ever had  optic neuritis or not.  He only said that my eyes looked healthy. And that the double vision would come and go. And that obviously yes there was nothing he could do for me it would pass eventually.
Helpful - 0
667078 tn?1316000935
With MS double vision it does not come and go. It is constant for weeks, months, or more. You probably need IV steroids. They can give you prisms or patch one eye in some cases.

Helpful - 0
9671341 tn?1443128711
Thanks again Alex!

Ok so when I went to the eye doctor I explained what was going on which was hard to explain. I will explain it here. obviously him saying double vision is not what it is.

So out of the blue when focusing looking at something, someone or reading I experienced what was something that made me feel dizzier the my usual. what I was looking at shifted to the right.  very strange feeling. very hard to explain. it catches me off guard and is very nauseating.

So I guess he felt that was double vision. is that kind of how double vision is?  

Helpful - 0
667078 tn?1316000935
Is it like an electric shock? Is it where you switch from one eye to the other?

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9671341 tn?1443128711
Yes something like that. But not painful.
Helpful - 0
1831849 tn?1383228392
Nystagmus is double vision caused by the muscles tha control eye movement, rather than optic neuritis.

I have double vision for the first 2-3 minutes when I wake up, but my eyes and optic nerve are fine.

Helpful - 0
987762 tn?1331027953

I honestly don't believe what you've described would be called 'double vision', to me it genuinely sounds like it would be more consistent with how dizziness or vertigo is commonly described...

"So out of the blue when focusing looking at something, someone or reading I experienced what was something that made me feel dizzier the my usual. what I was looking at shifted to the right.  very strange feeling. very hard to explain. it catches me off guard and is very nauseating."

Double vision is literally seeing 'double' instead of one image, i have double vision and i actually see a lot of weird because of it, to me images often look 3D eg lines along the road etc, or are obviously double eg seeing extra eyes on their forehead etc, or images overlapping which isn't as obvious double eg H = #, V = W etc

You've also said....."I posted about how I was having left eye pain and what I didn't realize was double vision" and that isn't how 'double vision' is typically described either, i think it might help if you read about dizziness and vertigo, see example below


Helpful - 0
9671341 tn?1443128711
I went to my eye doctor and told him what was going on. He is the one that came up with the double vision diagnosis not me.  like I said it was hard for me to explain to me it was a weird feeling were everything in my eye field like shift to the right  but did see 2 of each. it is hard to explain.

Yes I am reading it is not classic MS double vision. that's fine, Great even!]

And as for the dizziness/ vertigo if we thing that's what that episode was who knows I don't know. I do have other dizziness vertigo going on not just that episode.

Helpful - 0
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