Struggling with symptoms

[katvar]

Warning: this is a long one and it gets pretty whiny.

I know everyone's MS is different. I am really trying to keep going but I have gotten stuck. Lets start with the fact that I almost hit a car today. I absolutely did not see it. My daughter had to shout to get my attention. That was a final straw for her - she is 17 and now plans to go everywhere with me. She has been complaining about my "blanking out" but I don't know how to get the dr to understand or which dr I should discuss my current symptoms with.

I can not hold a thought - I have had cognitive issues for awhile and have been through testing. I am afraid to even try to say something out loud because I am not sure what will come out. I can not get focused.

I started having more vision related issues about a month ago, but I have hesitated going to an eye dr. I am not sure who to go see and I am worried about the results.

Fatigue - I know we all hate it. I don't want to get up in the morning. I want to go back to bed all day. I feel like the fatigue is what is making everything else worse.

I know this sounds awful but I wouldn't mind being in the hospital just so I can get some rest.

I don't have the option of laying down a lot. I have children at home and my husband has been disabled for 15 years - he tries to help sometimes but I don't think he gets it. They are all used to me just sucking it up and I don't the the power to suck it up left.

I take my medications faithfully. I stretch and take a quality multivitamin daily. I don't drink or smoke (never have). I eat a pretty healthy diet. I am a vegetarian (including dairy). I tried gluten free for a year - no changes. I take copaxone, ampyra, provigil and keppra (for uncinate seizures)

I don't know what to do at this point. I don't go beyond a 5 mile radius of my house and I choose where I do go by how much walking may be involved. I get up and dressed every day and try to be purposeful so that I don't become depressed. Currently, it doesn't seem to be working. I am not a person that is usually sad or pessimistic but right now I am really frustrated.

I know we all have our own things to deal with but I could really use some advice and encouragement. This site seems to be the only place where others might understand what I am going through.

[jumpinjiminy]

Katvar, I'm not sure what's available in your area, but sometimes there are services that provide respite care if you're the caretaker of someone disabled. We looked into it for a break from parenting our son with special needs, but by the time we found out and made the call they had let them all go because of budget cuts. Thankfully, he improved and we've survived the roughest parts. But if you need it, it might be there.

I'm so sorry you're going through this. I do know how you feel. I was at wits end with my own child for a while, and my husband at the same time because he didn't seem to understand how much strain it was for me back then.

I would say a neuropsych, but it sounds like you've already been through that.

[jumpinjiminy]

Here you go:

http://www.tn.gov/comaging/respitecare.html

[mjan]

First of all, I am so sorry for ALL you are struggling with; but it's a good thing your daughter is so alert with you.

Since you already have a DX of seizures, you need to report these episodes of "blanking out" and have your daughter also record exactly what you do (and don't do) while having them k? You may be having some other kind of seizure, like complex partials. YOU will never be aware of them, and you could be doing odd things, but technically you are not conscious and driving extremely DANGEROUS.

Who is following you for you Keppra? THAT is who you should be seeing as soon as possible. At least get complex partials ruled OUT!! Been there hon..

Maybe they DO need to put you in hosp to do a 3-5 day video EEG. And make sure they know how this all intertwines with MS..

So.. HUGS !! Let us know how everything is going.

Warmly, Jan

[tigger13039]

katvar,
I feel the Dr you need to discuss your issues with is your Neuro and PCP. It seems you have a lot (besides MS) of 'stressors' in your life that add to your stress level and suggest a 'Neuropsychological Evaluation/Testing' (Nero) can help you. It can tell you exactly where your cognitive level is, compared to where it should be due to the impact of MS, plus it will evaluate the impact of the stress you have and how it effects your cognitive level… in a nutshell.

The “blanking out” can also be caused not only by MS but by exhaustion, depending on your sleep patterns and apnea (PCP). Defiantly, if you’re “Super-Mom, Super-Wife, Super-Worker” all-in-one and a caregiver (bless you), and a patient (MS)… Katvar… you have got to be over worked and under sleeped. I’m a parent, husband, patient and part-time care taker to my wife and I’m sleeping on the couch mid day.

As scary as it may sound I suggest you see about your 17 year old driving (if legal). I also don’t know the details of your uncinate seizures, but I don’t know if it effects your driving, however having an extra driver in the house can relieve your obligations. Depending on your insurance, they also will provide transportation, if needed for you and your husband to your appointments and shopping needs. I do think it’s only normal for her to be concerned. I have migraines and take a lot of preventive medications, but was having the ‘blank out’ driving problem until a different Dr finally reduced my meds by ½ and I remarkable results. So that whole time I was cursing MS… lol

I would recommend Cymbalta to help with your depression, and it may have a second help with your seizures (I think I read somewhere it can be also caused by depression). Defiantly a PCP issue, but it’s not uncommon for MS’ers to have a form of depression.

Most important is stay close to the ones you love and cherish them and accept the help that is offered. There is help out there, reach out and it will come! I wish you and your family the best and hope my advise helped. Keep us in the loop and keep your head up!

[katvar]

Thank you to all who took a moment to post. Seems I am going through an exacerbation. I had no choice by mid-day today I was in bed. I can barely get around.

My neuro (private practice that I pay out of pocket) is on vacation until after the holiday weekend. I just started using the VA system and my PCP was unwilling to see me for MS related symptoms. I requested to be reassigned and was given an appt for July 20.

I did have a neuro-psych evaluation. The results showed that I am able to compensate some what but I struggle to process information. I need things broken down in to little bits. They did not feel that I am depressed, neither did the mental health professional that I went to see. I don't feel that I am depressed - more frustrated. Type A personalities in an uncooperative body is not a good mix.

My husband is back on track again. He goes through cycles of just sleeping (serious depression runs in his family). I know he tries but I think he also is used to getting more attention from me - I don't mean that in the childish way that it sounds. The kids have been more helpful -
I guess MS just burns the whole family out sometimes.