I read everyone's post and have to say I applaud Dave's participation; not many men would express those personal intimate details & it helped me too. I've had MS for 30 years and my husband, (2nd), is a prince. I've been going through a depression period and there are days & days I spend just sitting on the couch or at the computer & my husband doesn't say a word. I mean he does ask how I am feeling, if there is anything he can do for me, do I need anything, etcetera. This from a guy who is working almost 2 FT jobs, because I cannot find one.
I also have lost a lot of the desire to have sex; I'd rather just cuddle. However, Paul is great, he doesn't push, get upset, frustrated or angry. Although, I do have to admit that there have been times when we are just sitting together on the couch or laying together in bed and he will give me a back rub, or play with my hair while we are talking. Then I do not know how he does it, but next thing I know I'm kicking the dogs out of the bedroom.
Don't get me wrong, this only happens once every few months; I know we have gone almost a year with no sex. We have a good relationship & talk openly & honestly"026 Come on, think about it, when talking about MS one has to be open, especially since we don't know what the morning will bring!
PS of course I didn't know what I was missing until I got divorced! View Thread
In the early years of my MS I woke one morning and was so dizzy (no blonde jokes now! ), I couldn't stand. My neurologist told me it wasn't related to the MS, I probably needed more vitamin C. I spent a week sleeping on the floor with a gallon of OJ next to me, until the spinning stopped.
The second time it happen, about 2 years later, different doctor; I had moved), the doctor told me, yes it was MS related! I told him about the previous episode and he apologized that I had to go through that with 'no understanding'.View Thread
You are not alone! Think positive; there are many, many people more than willing to offer support, help & advice. I have had MS for 30 years, and have remained in the relapsing / remitting stage and the only permanent damage I have is the central nerve in right eye. slight problems with depth perception, so I will never be able to play tennis! However, that actually is a positive, because tennis is a sport played outside"026 in the heat! Ugh!
I am not a doctor & don't claim to be, nor do I claim to be a know-it-all; there are way too many issues with MS that is still unknown, how can anyone claim to be an expert. I only speak from my personal experience; yes MS is easier to diagnose the longer the doctor is treating you, watching your progress with regular testing for comparison.
I've been told that I am one of the lucky ones because I was diagnosed quickly & that was before any 'proof-positive' tests for MS; all the doctors could say is ""026there is no proof positive test for Multiple Sclerosis, but I believe that is what you have." (That is almost word-for-word quote what my first neurologist said to me.)
Personally, I am a strong believer in faith and 'how you deal' with the MS; me? I look at the positive; it gets me out of helping to mow the lawn or shovel snow, I am unable to go up & down the steps to do several loads of laundry! You must keep a sense of humor once you find a doctor you are comfortable with and trust, then relax and find the humor"026
I do not know where you live, so I cannot offer any suggestions or referrals; however, and you may think this is crazy, but if you are scared, confused, unsure and getting more & more frustrated & depressed, why don't you join Angie's List. It is $10 for a year, and I swear you can look up doctors, read their education, AND reviews from their patients. Once you are a member, you can also call & speak to someone, explain your situation / concern & they will give you a starting point. (That is how I got my eye doctor.)
When I moved here & started looking for a Neurologist, it was hard. I called the hospital, asked for recommendations, and informed they could give me a list of doctors, but could not give specific referrals. I feel your frustration, and I wish I could do more to help, but I am going to follow this conversation and will try to help if I can. If you live anywhere near the Cleveland Clinic, I could give you a doctor's name. Have you used the Internet to research neurologists or the one you are currently seeing? If you haven't, you should. I was astounded when I looked up my neurologist, (Dr. Gary Rae-Grant). I discovered he had authored a few books, speaks across the country & attends various MS medical conventions. I would 'Google' your neurologist first; you will be amazed at the amount of information; pro's & con's.
Also, please call your local MS chapter. You will receive so much help, answers & advice than you even knew was available. I hope I didn't ramble too much & I hope I was able to give you even a little bit of advice or calm a few concerns.
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