saw neurologist for the first time

[mom98]

Had my initial neuro appointment. The doctor was very focused on my headaches(which I've had for half my life) and none of the other dozen plus symptoms I came in to discuss. She wants me to have a MRA of the brain and MRI of the spine. She also focused on my pituiary which she admitted was not her specialty. She ordered blood work for that as well as b12 and folate, some coag studies and lupus studies. She said the lesions while not ruling out MS did not particularly indicate MS (so YAH!!!). She wants to see me in 3 months but really I don;t see the point. I've dealt with headaches all my life I can handle them. I had to wait over 30min while I could hear her having a personnal conversation next door! And then the fatigue, pain, pins and needle, double vision, memory loss, difficulty with speech, incontinence (oh, and I am 33!) and everything else I went in with we aren't touching! But go see a headache specialist! (Sorry frustrated!) I knew there wouldn't be a magic wand but I feel so dismissed! Now my husband is acting like I am perfectly fine and my "complaints" are irrational.....UGH!!!! I still have to go the endocrinologist for the pituitary but she said it could be just a "plump" gland which is possible if it secreting too much hormone (nevermind all my hormone levels come back normal), so now my hubby is talking about how that is a nonissue and making me feel pretty bad about wasting time and money on this too. Yikes, big time whine fest over here! Any thoughts or even just whining with me would be greatly appreciated...

[summerluvr]

Hi I am also 33!  And female!  I think so far the neuro seems good.  I encourage you to keep seeing her. She is following up all the leads so far and rulling in /out stuff so that is good.  She didn't just say you have migraines and that is that.

My expireince being really sick and not diagnosed was very hard.  I started to feel like maybe I did have mental health issues, and I started just trying to live a normal life.  But things like frequent migraines (weekly for me) and fatigue (falling asleep at 7pm everyday on the couch!)  really interfered with that.  I think all these doctors dismissing me really affected me mentally.   I have discussed it with my councilor and she agrees I did not have an anxiety problem before getting blown off for a few years by doctors, but I have some real medical related anxiety now (panic attachs, type thing at going to a new doctor)

[mom98]

Thanks everyone! I did make the optomologist appointment and gt lucky, they can see me first week in July. Still waiting for insurance approval for the MRI and MRA. I knew the migraines could cause the lesions but I never realized they could cause the other issues. I guess what got me was I didn't and still don't prioritze the headaches. There a nuisance but not a hinderance to my way of life. The memory loss and inabilty to concentrate are effecting my job and my interpersonal relationships. The incontinence is humiliating! But I guess it is a starting point. It is just frustrating to trave an hour each way and not have something more definitive and then to deal with my husband now acting like it's not an issue because of this appointment. Again thanks for the support and sympathy. I do appreciate it!

[Lulu54]

To me it sounds like this neurologist is a good one, so far.  The fact that she wants to see you again in 3 months tells me that she is interested in pursing answers and not just setting your complaints aside.

Headaches and migraines can cause a wide variety of problems some of which can mimic MS symptoms.  

This can be a difficult disease to name and I'm so sorry you are without any answers for now.  Here's hoping your husband can turn around a be more supportive while you go through more testing.

best, Lulu

[MonkeyMom4]

I'm sorry you're going through all of this, but at least you're in good company! I too am 33 with no diagnosis.

I have a husband that makes me feel the same way, that it's all in my head, that I complain too much, that I don't want to participate with him and the kids. He just doesn't get it and it's frustrating as h.e.l.l. But I can I expect him to understand when I don't understand what's going on with my body.

Like Alex said, I think this is the way guys deal with this sort of thing. They think if they don't ask then it's a nonissue and will just get swept under the rug.

I wish I could be of more help to you. Just wanted to let you know that you are not alone and you can whine as much as you want! =)

If it weren't for this forum I'm not sure I could handle this as well as I do.

Good luck with the docs...and the hubby, they can all be a pain in the a$$!! ;-)

Don't give up!

[HVAC]

You sound confused and frustrated which is reasonable.

First of all most Doctors deal with one complaint at a time. My MS Specialist for example says what bothers you the most and that is what we deal with even though I have almost every issue out there.

Second and this is confusing MS is a diagnosis of excluding all other possibilities. The way it works is you don't have MS until the evidence overwhelmingly says you do.

They do a lot of tests including lots of blood work to rule out every possibility. There are hundreds of Neurological disorders and many non neurological illnesses which mimic MS.

It does sound like she is doing the right tests. Also Neurologists follow you over time to look for changes so seeing you back in three months is reasonable.

Sometimes I feel like Neurologists are speaking a different language. I would come out of appointments more confused than when I came in. I sometimes felt like Alice going down the rabbit hole.

As far as spouses. My husband was scared and I did not know it. During my two years of testing I went alone and he discounted it. He was really hoping if we ignored it it would go away.

You may or may not have MS. Unfortunately they can't open up our brains and look inside so they have to do things by tests which give them a glimpse. No test rules MS in or out.

In my case my first MRI showed classic MS they were looking for something else. All the other tests for the next two years pointed to MS but it took what it took.

Some day it will be easier to diagnose illness. Even with fancy machinery the human body is still a big mystery. Keep the faith. Being where you are which we call limbo is very hard in deed.

Alex