Gosh, I really feel for you, but I have not experienced what you and many others on this board are going through.
I pooh-poohed my pains and wrote them off as old age prior to my attack. After my attack, my husband has been nurturing, caring, and overly concerned to the point that he baby's me. Most of the time it bugs me that I feel that I am under a microscope with him and he is constantly asking me if "I'm allright" and wants to do everything for me.
I am not going to let him do everything for me - only when I ask for help. I used to be the dynamo in the house and in our relationship and now our roles are reversed. He has been on disability (injuries from being a beer delivery driver for 21 years) for the past 6 years and he is more concerned about me and I am the one more concerned about him.
I freaked him out really bad when I had my attack in the middle of the night and was totally useless for 5 weeks that he is in a panic that it will happen again. And now my mother is visiting and she is putting me under the same "microscope" and pressuring me to get answers.
I only have 2 lesions, but no dx. I called the National Multiple Sclerosis Society here in San Diego and asked for a referral to a local MS specialist since my own neuro does not want to see me unless my GP refers me to him.
I received a referral to a Dr. Jody Corey-Bloom, faxed all of my diagnostic tests to her (MRI, CAT scan, blood work) and hope that she will take me on as a new patient. I have read some of her research on the internet and am excited about meeting with her. I have never had evoked potential testing, MRI of the spine, or an LP. Not that I am looking forward to an LP and will have that be a last resort, but at least they can do the evoked potential.
My previous nuero could only tell me "I don't think you have MS". Well, if I don't have MS, then can you please tell me what I do have! It is my GP who believes that I do have MS.
I also took the advice of others on this board and picked up the CD's of my MRIs and my CAT scan films yesterday, so that I will be able to take them with me to a new neuro.
The "I don't know disease" just isn't cutting if for me anymore and would like to have a definite dx of something other than "demyelinating disease of unknown origin". However, even if I do get a dx, I am not so sure that I want to take the drugs.....
It is definitely a long journey through limboland, but at least I have proof that something is wrong due to the MRI results.
PS: I know this doesn't help much, but I used to be the kind of person your boyfriend is and while I was healthy, I could not stand so-called whining and complaining of aches and pains from any of my family members (kids or husband). Now on reflection, I wish I could have been kinder during their moments of need for sympathy.
my heart brakes for you,I went through similar times with my hubby.I honestly don't think think they intend to be cruel or nasty.They are helpless to our pain and symptoms,they are powerless to take it away.men are our protectors.
I live with chronic pain,some residual to 2 lumbar surgeries,plus a demylinatining disorder.I have 1 lesion and a high elevated myelin basic protein of the spinal fluid.
The lumbar puncture isn't that bad.It's a test of nessecity.It rules out other diseases and can be positive in detecting MS.
Angela here is something that might help,I received this from my uncle ,who knows Christana White MD---Alternative Treatments to MS symptoms Alpha Lipoic Acid 300mgs 4 x a day or 600mg 2x a day , Folic acid mcg.I was skeptic at first,but has lessoned my pain and symptoms.
I don't have a dx either.I do take zanaflex and baclofen for chronic spasms.I don't take the pain meds I have since starting the Alpha Lipoic Acid.It is a cheap alternative ,it's about $15.00 a month'
I hope you get some releif and answers soon
This is a really tough situation. My only advice to you is to take care of yourself. You don't need anyone's permission to have these tests done. You should have these tests done. Also, don't discount the value of an anti-depressant but don't go on one just to appease your boyfriend. It is common for people to blame the chronically ill for their illness. It's way (a bad way) for people to cope, it's a way to separate themselves from the sick person.
Thank you all so very much for your kind and thoughtful replies. I have since gotten apologies after pointing out how hurtful his words were. Hopefully it won't be a reoccurence. However, I understand that this must be very hard on him too, because he doesn't know what to do for me. It must be especially frustraiting because he is an RN. The difference is- he sees people in an ICU who are always dying- so if you're heart is pumping and your brain is in your head, then by his terms, you're doing okay. I guess it isn't a bad perspective-
Again, thanks very much. I took something useful and valuable from each of your posts (I'm going to go and try those "alternative therapies" too ).
i hope he stays by ur side and helps u,, i have the most wonderful husband ever,, we love each other sooooo much! he does anything he can for me,, and our family,, he actually took the day off work last night which is something he never does,, only if i am in the hospital,, but he took me to an MS seminar,, my parents and daughter went with us and we went out to dinner first,,, i know he was scared at first,, he is the one who made me go to the dr,, i kept passing off my symptoms for yrs cause they would come and go and the summer i found out it was MS he is the one who made me go to the dr asap! and he has been so good to me,,, i wish the same for u! hopefully ur b/f will come around and be by ur side thru thick and thin, cause that was relationshps are all about. i wish i could give u better advice,, but i have never been in ur situation all i can do it wish u luck and send u lots of hugs and prayers!
I'd take him with you to a neuro appointment. Have the doctor explain that neurological disorders don't have tried-and-true tests and can take years, sometimes decades to nail down. Maybe hearing the words from a doctor would help him understand that this isn't in your head.
I think the toughest thing for my bf is that I dont' have a dx. He doesn't think it's ms or anything like it.
To the contrary, I don't want him in there the next appt. He does go in sometimes, but I guess I need to talk to the neuro alone and tell him that my whole family thinks I'm nuts. I'm afraid this dr. is not going to do anymore testing, but I'm going to insist. I have to find answers for myself, if not to prove to everyone around me. I've even started doubting myself, but my friend told me the other day, "I've seen you when you were suffering from anxiety and depression (a few years ago) and this ain't it. This is obviously very real to you, and I believe you. Not only that, I know it's not in your head because you're one of the most psychologically together people I know!" That was a little reassuring. I am so blessed to have her!