Messed Up/Not Sure What Is Wrong or Where I Belong
 

This is not the first time I've posted here. I've been here numerous times about the symptoms I've had over the last five years. My neurologist has passed my symptoms over the last few years with migraines. His PA recently sent me to a neurotologist who dx'd me with MAV (migraine associated vertigo).

However things have only worsened since I've seen the specialist. He referred me to a PT for MAV treatment. The PT treatment is common to make a person's vertigo worse but will become better later during the treatment. But, the treatment has became so severe I have had more days bedridden this summer than I've been out of the bed. I've called the specialist and he has changed my medication. It helped for two weeks only then to get worse-again and this time, to the point where now I am having problems eating and am to the point where I can eat limited foods.

I have an appointment with my regular neuro on Thursday. This afternoon I called the specialist because I'm so miserable. For the last 4 weeks I've had ear pain and vision problems. The ear pain has subsided but the vision problem has become scary. It is happening daily. I'm afraid to drive anywhere. My vision is blurry infrequently and I never know when it will happen or when the vertigo will become extremely debilitating- or when I will fall.

Over the last few weeks I've had 3 falls that were bad enough to cause physical damage to my body- scraps, purple/black bruises and one trip to the outpatient clinic to determine if I broke some ribs. Luckily I just tore up the muscles in the ribs- but 3 weeks later- they still hurt when I lay on my back and breathe. And, I loose my balance and coordination so much during the day that when I'm walking it is very common for me to run into the walls or furniture or trip on the stairs.

Not sure what is going on- or if I they will do another MRI/CT. I'm just very irritated. I've had mono twice when I was in high school. I have a lot of MS symptoms. My body feels like it is falling apart. I just want to crawl in a hole and not wake up. That is how crappy I feel. It sucks not being able to feel 'physically' good and able to do anything with your family and not being able to have any answers. I hate this and want some answers and since 2005 I've been through hell trying to get them thru doctor after doctor and have been ridiculed, etc. from numerous doctors.

I know that many of you have been through the same run around of doctors getting dx'd for years. I don't know what is wrong with me or if I belong here. Right now, I don't think I have the right dx and I don't think I'm being treated with the right medications either. Not sure if I'm with the right specialist either. I just want to scream at the top of my lungs- feel like I'm going nuts.

None of my friends or in laws or family except my sister and DH knows about this. We don't want them to know because it is just a 'whining story' to them. They won't understand- because 'I look normal' to them. Why would they think anything is wrong with me? My sons know otherwise- they have seen me bedridden, fall and sick to my stomach and not eat.

Thank you for listening to me babble and whine. I needed to vent and I have no one but my DH to talk to and I feel like I'm driving him nuts.

Coffeegirl

:hug: Coffeegirl :hug: I'm sorry you're having such a hard time right now. It can be so frustrating when it seems like the doctors are dragging their feet regarding a diagnosis while you're still suffering and just want to know what's wrong. MS can be so difficult to figure out.

Have you been to an MS specialist? Have you seen an Opthamologist about your vision? A lot of my MS symptoms are visual.....and the heat does cause my vision to get blurry sometimes.

Keep coming here. We all understand. And we don't think you're whining or putting on an act. It's hard to "look so good" while you feel so bad.

I hope you get some answers soon. We're behind you!

Awwwww CG, I am so sorry for your grief, right now. It's a dirty trick that some Docs play, when they can't figure out what your illness is....It's called "blame the victim, 'cause she's nuts"..:mad:

Tell your Doc that you are aware of this, but you are really Illl and could he/she please, look for answers and treatment for you.

You are welcome right here. This is not an exclusive club and obviously, you have something neurological going on.

Let us know what your Neuro says, thursday and take care of you..:hug:

balance
 

Hi,
I know the frustration of going through the continual process of MS/Not MS. So, I guess you are now having balance problems and is nothing helping so far? Have you seen a neuro-otologist. This is different from a neurologist, it is a specialist with neuro training that works with ear and balance disorders. I have a rare balance disorder and two other balance disorders so I fall a lot.

Are you using something to help you walk, like a rollator? I have been through plenty of balance training, balance therapy, etc. and nothing helps me. I have to use a rollator all the time per the specialists and physical therapists or I could fall and break a hip or something. I still fall because I don't have warnings before I fall, but this helps.

Hi coffeegirl!

I don't have any other suggestions to add, just wanted to say hello and hang in there. It's so frustrating, isn't it, when you're told, "It's all in your head". Right -- NOT! Take care and please keep us posted on your progress! :)

Sorry you're suffering so, CG.
My first neuro decided I had migraines and gave me meds for that...which gave me migraines and made me feel so horrible I wanted to hang it up...

It took me 3 years and another neuro, with some severe spasms before I got a dx. That neuro passed me off to his NP, who poo-pooed my sxs and didn't call back for at least a week when I'd call with problems.
Someone here recommended my current neuro-I finally got one that listens and takes me seriously.
I hope you take the others' suggestions-esp about the eye dr.
Come on here and vent away-many of us have been through years of what you're experiencing and understand how frustrating it is...:hug::hug:

no advice, you got some good stuff above. just hugs :hug:

Seek another opinion, change docs, try to find an MS specialist. I echo what others have said. My first two neuros said it was peripheral neuropathy, but my MS specialist said that was dead wrong. Right now I am stuck at transverse myelopathy, but he acknowledges that there is something going on in my spine, despite no lesions so far.

And as for others being critical of you because you "look normal" . . . almost to a person we all look good! We look better than we feel, and that is part of the process. We have an invisible disease/disability. But remember you must take care of YOU first.

Hugs to you. It is frustrating. I am in the same loop you are right now . . . no real answers,and treatments that do not seem to be making much difference.

i'm so sorry you're going thru so much right now.
you're more than welcome here even if you don't have a dx.
we understand and you can talk to anyone here openly.

i'm a nurse and still have drs that can be dismissive. if you can't measure it on a lab test or see it on a physical exam it must not be true kind of mentality.
and, women can get a lot of...it's all in your head or it's hormones. that's just a cop out when drs won't look further than their face for real dx's and answers.

now that i'm off my soapbox my advice would be to try coming off the med you think is giving you the most side effects. tell your dr so he can give you instructions on how to best do it. then see if you feel better.

i hope your new neuro will really listen to you and validate you. that's the sign of a good dr.

please don't give up. could your sister or your dh go with you to your appt?
sometimes when someone else supports you the dr will see you as more credible.

we're here for you. i hope you get to feeling better and will find the answers you need.

Hi Gals! :)

Thank you for your advice and comfort~ It has been so nice and it has made my day and also made me cry. Right now I feel like the whole world is against me and thinks I'm absolutely insane.

Yesterday my sister, who also has a lot of health issues, vented to me on the phone for over an hour about her problems. She lives out of state. I always have listened to her; always but whenever I have problems- she rarely listens to me and when I bring up something she usually makes an excuse to get off the phone and uses her daughters behavior as an excuse to get off the phone telling me she will call back. Then she doesn't and I will try to call her, and of course- she does not answer- the rest of the day or week, until she needs me to comfort 'her' again. This has gone on since we have been kids. So, I'm very used to it. Telling her off I've have found out in the past only creates huge havoc in our family life. So, I just have learned to keep it at bay and deal with it the way it is.

She does know about my problems and is supportive. Today I told her on the phone that I tried to talk to my MIL about my symptoms/problems she 'did the phone thing' again. Then of course, my MIL, did not want anything to do with my 'health problems' and only wanted to talk about herself. That is par for the course. Trust me- it is best I don't even go down that avenue.

My DH again changed his view on my health problems. Now he is back to square one- with the 'it is a) in your head b) it is all of the meds I take and c) hypochondriac. Oh, I'm just so happy that everyone thinks I'm a crazy person! :eek: Including my own DH! I sent him a text today asking him to be supportive. Ironically he tells me to stop searching on the Internet and dx'ding myself. So I told him in the text to stop being my 'doctor' and telling me that it is all of what I just wrote above. I highly doubt he will listen to me- because he thinks he is always right. Trust me.

He tells me to not share my health issues with anyone- then he tells me to be 'positive' 'happy' 'outgoing' 'etc'- when we are in public and to stop hiding myself in the house becaues I'm a hermit. Well, when you feel like crap- you dont 'want to go out and when you have a spouse tell you to 'be peppy' when you feel like crap- 'it is very discouraging' and 'makes you feel even worse'- and when they tell you to 'hide the truth' from everyone it even makes you more ashamed of who you are as a person. Then he wonders why on earth I have such a low self esteem though I had it long ago- now it is even worse. ugh!

Now I just want to hide and never go out. I'm suppose to go on a couples golf outing Friday. I have bruised ribs- can't pick anything up but I'm suppoed to GOLF!? UGH! ANd, then act like nothing is wrong with me! And, try to act like I'm not weak- though I can't clean the floor in only 5 minute sets or laundry, ect,.which you all understand completely. Groceries- Need I say more?! After yesterday, I highly doubt I will get them again or drive anywhere from here on out. That was horrifying. If he can't seem to figure it out then he has a huge problem!! :mad:

I'm sorry that I'm so cranky. I feel very guilty, alone, sad and confused. Tomorrow I meet with the neuro. Sadly, my DH won't go to the appointment with me. He doesn't think it is a big deal. That really hurts. But he goes to all of my sons doctor appointments (he takes human growth hormones)- and then gets mad at me when I tell him things that the neuro says- and tells me "Why didn't you ask him this?!" ugh! So I'm very frustrated.

Thank you for listening to me babble and whine. I know you all understand and have been here in this spot I'm at before. It really stinks. I know it will get better some day. That is what I keep telling myself. There is hope- somewhere out there! :)

Coffeegirl