Is it worth going back?

[zenhound]

Hi All-
I'm a frequent lurker but rare poster. I'm undiagnosed and just sort of bumbling along through the whole process. For the past several months my symptoms have largely disappeared, with the exception of TN which is fairly well controlled with tegretol.

Recently my visual symptoms have come back. From what I've read they aren't typical of optic neuritis. I don't have much pain, although here and there my left eye will hurt a bit. (And I think TN has changed my definition of pain entirely; a normal person might think it hurts a lot, but to me it's minor.) Mostly I get spots of light, little bright pinpricks of light, very similar to what you'd see when you're over-exerted except they don't move around. Then sometimes I get larger dark spots. They look a lot like cigarette marks on film. Sometimes dark shapes in the periphery. And then sometimes I get blurry vision but so far it's really brief.

Thus far in my journey almost every test has been perfectly normal. All bloodwork, MRIs, previous eye exams. I'm debating whether or not it's worth getting in touch with my neuro and asking to re-visit the neuro-opthalmologist (sp?). I really hated the neuro-opthal guy I had. He was dismissive and made me feel crazy. I'm on an HMO, so I don't have much choice in docs. He may or may not be the only one, I haven't checked yet.

I just want to know if it's worth starting the process up again. Making all these appointments, going through more invasive testing, just to come up with nothing and feel crazy. I know the answer, I guess, but it's not what I want to do. I want to go on pretending things are normal. If I do have MS, it's likely they won't give me a diagnosis for quite some time. Does it really matter if I put it off a bit? I suppose I should at least let the neuro know that things have changed. I'm just kind of over this at the moment.

Like I said I think I know the answer. Mostly I think I'm just posting for support. Everyone in my life is kind of over hearing about this (can't blame them--I'm over talking about it!). Sometimes things just suck, you know?

[Lulu54]

Hi Zen,
You are a perfect example of being worn down by the medical system and giving up before you should.  You know your body, you know there is something wrong, but yet you are willing to settle and accept it the way it is without answer?  No, I didn't think so.  

It is ok to take a break and rest to regain your wil to fight, but you have to reenter the fray and go back to pushing for answers.  There is something wrong and you deserve answers and possible treatment if it is called for.

hang in there,
Lulu

[msjethro]

My sx started with my eyes, I had double vision in one eye. The eye that had double vision would not focus on what I was looking at. I could close my eyes and refocus it for about a minute.It was interesting when I would tell the nurse's what it was doing, it would be normal when I opened my eyes then it would do its thing. That would get there interest. Also I had vertigo.  I didn't have any pain when they did the MRI  on me just the problem with my eye and vertigo. You need to make you an app. with a neurologist.I have RRMS and that was the only sx I had when they did the MRI and then I had a LP.

[jujuminx]

I would say keep fighting to get a dx.  MS doesn't mean from onset plus a couple of years you are disabled.  MS is different for everybody.

Most people when they are dx with MS are dx with RRMS (remitting relapsing), which means the sx generally come and go. The frequency wildly varies, just like the sx.

My first sx appeared almost 20 yrs ago but then, like now, they would always go away. That is why it took so long to dx, that and my brain MRI's were always normal.

Your symptoms sound neurological so a neurologist would be the one to go to to get some help.

Julie

[zenhound]

Wow, thanks for this. That's a dose of reality that I maybe needed to hear. I keep thinking that even if I suddenly get an answer somehow there's nothing I can do, but I guess with all the drugs available that may not really be true.

I'll get in touch with the neuro today. Thanks again.

[Sumanadevii]

Zen, please continue your search.  Don't stop until a dx makes sense to you.  So much damage can be done to your body.  I knew something was seriously wrong.  I let so many different doctors and specialists tell me nothing was wrong.  It got to the point I was in a wheelchair for any distance.  My husband and I decided I would go to my grave not knowing.  We just did the best we could and stopped searching.  Looking back I know how aggressive I had been before giving in.  I wish I hadn't.  Don't be me ten hears from now.  Put on your battle gear and get into the ring swinging.

[zenhound]

Thanks for the replies. It ***** that other people go through the same things, but it's nice that we have a place where we can compare notes and feel slightly less overwhelmed and/or crazy.

My symptoms started in December of '09 with a numb patch on my face. (Well, in retrospect they started in 2000 when I had an incident with a tooth that was hurting and uncomfortable and I went to 3 dentists trying to get someone to fix it but they all claimed it was fine. My TN started subtle apparently.) Over the next few months that numb spot went away and the shooting pain along the left side of the face began. It has since become bilateral. Also added pain in both feet, left leg, left arm, muscle twitching, phantom sensations of something being tied around my left knee, the visual stuff, muscle stiffness/cramping in the left calf, balance problems, vertigo, word swapping/minor cognitive issues, and lately an increase in rib/chest pain.

I've had three MRIs which were perfectly normal. None of them are recent, it's been at least a year. The neuro-opthal guy did visual fields testing and a retina test of some kind, all of which was totally normal. The only abnormalities at all have been a slight B12 and vitamin D deficiency, which were both on the low side of normal and have been brought up with supplements. On neuro exam the only abnormalities that they've noted have been hand tremors and that my legs are hyper-reflexic compared to my arms (which seem to have almost no reflexes).

I do suspect MS in the sense that it seems to be one of the few things left which would account for all of these symptoms and isn't easily eliminated. I don't suspect MS in that it seems so rare and that I just haven't progressed very quickly at all. Which is great, don't get me wrong! But reading stories here it's like first symptom, within a year extremely ill and having trouble functioning. I just haven't had that experience at all. Which makes me wonder if it really could be psychological. My therapist says no, one of the psychiatrists I've seen says no. I'm thinking of going back to a psychiatrist that I saw for years who is outside the HMO and just paying for it out of pocket so I can get his opinion. If he tells me it's physical, it would go a long way towards settling that for me because I actually trust him.

The neuro offered a nerve conduction study at one point. It sounded like a science experiment so I passed. The prospect of some of these tests really scares me (especially the EMG and the LP, but that hasn't been raised yet thankfully). Mostly I just don't really feel like I have the strength to go in and insist that something is wrong and that we do more testing. That takes a level of confidence and belief in my own experience that I just don't have I guess. Kind of sad that the docs are able to make me question my own sanity.

That's kind of the nutshell version, hopefully it gives a bit more clarity. Thanks for the responses, it really does help to know there are other people out there who have dealt with or are continuing to deal with the same process.

Oh and in terms of symptom tracking, I was keeping pretty careful track of that at one point. I stopped because it started to seem a bit neurotic. But not tracking them hasn't made them go away so maybe it's time to start again.

[jujuminx]

Hey, sorry to hear about your struggles.

Tell us more about when your first sx appeared and what they where.  I mean you got a bunch of testing and said all but the eye issues have gone away. What were other sx?  How long did they last and was it the first time they presented themselves?

Also, as was asked, when was the last bit of testing done?  If not MS, what do the dr's suspect?
You suspect MS I am assuming since you are here?

Would love to hear more.  Yes, sometimes things just s uck.  We can relate.

Julie

[vidalouise]

I completely understand what you are going through. Doctors appointments and the testing that goes along with it can quickly take over your life. And to only be told that everything is normal is so frustrating. I don't have any great answers, since it's something I still struggle with myself...even with a diagnosis. But I just wanted to say I understand. This is a great forum, and I wish I had found it years ago!

Bright Blessings and keep fighting !

[grannyhotwheels]

Hi Zen,  

Bless your heart... You are going through what I would say is the hardest time of your life right now... Not knowing can be so depressing and exhausting... We know our bodies better than anyone else and knowing there is a problem but not being able to get others to listen is just so frustrating...

One thing is don't give up... There is a doctor that will help you but the hard part is weeding out all the bad ones trying to find him/her...  I just want you to know that we will be with you through the long haul... If you ever want to cry on a shoulder, vent, or just chit chat, this is the place to be... Hang in there and do keep in touch...

I'll be praying,
Carol

[Sarahsmom46]

Thanks for sharing your concerns with us.  I hope we can be helpful and supportive.

When did you have all the previous testing done?  Months/years ago?  

Your story is so familiar to many if not all of us.  We've all been there at one point or another.  One thing I kept in mind while I was going through the diagnosis process was to always remember that I know my body better than any doctor will ever know it but unfortunately despite all the exhaustive tests that I went through, many coming back normal, that sometimes our body just won't give up what the underlying problem is until later down the road.  Eventually something will show, if not now then maybe 6 months or a year or even longer from now.

Keeping a journal (or use the MedHelp tracker) may seem kind of dorky, but I would highly recommend doing it as well as a timeline of your symptoms. Maybe you will see a pattern that triggers symptoms.  This is a good tool to help keep a record of what is going on so when you do decide to revisit the diagnosis process, you can hand the doctor a copy and let him/her see what you have been dealing with.  Seeing it on paper may be fare more beneficial to the doctor compared to what you tell him.  We forget stuff all the time. Stuff that may not seem important to us, but would be important for the doctor to know.  Anyway, think about it.

So, if you think you are ready to revisit this then you probaly are.  If you are still hesitant, then take some more time to see where this goes but please try to collect information in the meantime.  Do you have copies of your test results, MRIs, LPs, doctors notes?  If not, try to get them.  

Hope this was helpful.  I'm sure others will be along soon to add their feedback.