Nurses with MS or similar disorders

[nurse4theplanet]

I went to my PCP today and I seem to be having some s/sx that are suggestive of Multiple Sclerosis (MS). He has referred me to a neurologist for further testing. I did some online research about the disorder, etc. I know it affects people to varying degrees. I know that there is nothing I can do now but wait for a definite diagnosis, but one can't help but worry in situations like this. I guess my main fear is how it could possibly affect my ability to work...I have come so far to obtain my license. I need a little encouragement. Are there any nurses that have MS with positive stories they would like to share? I'm not seeking any medical advice...just some personal experiences that might make me feel better right now.

[fbmom]

Dear soldier's wife,

I am an RN with MS, I had to stop working 12 hr shifts on a busy, busy tele floor last summer. BUT I am sure I am quite a bit older than you!!

In between the MS which was aggravated by heat and the stress of charge, I finally had to stop working. The National MS Society has great info on their website, along with forums where you can ask questions and get answers and support.

You didn't mention what symptoms you were having, but an MRI with contrast is indicated, possibly an LP also. Had the MRI, EMG's. Evoked potentials, LP and tube after tube of blood work.

Knowing the military medical system {Tri-n-Get Care} [hubby is retired AF] you seriously need to get the PCP to get you another referral to a different neuro and YOU need to be adamant in getting these referrals and hopefully on the road to a diagnosis.

Best of Luck to you

[walkingonsunshine]

i didn't say this in my last post, but wanted to share this with you. i had ms symptoms and was tested for lyme. my first lyme test was sent to a standard lab, and came back negative. over two years of hell later when i finally got in to see a lyme literate infectious disease specialist, he sent my lyme lab test to igenex labs in california. he said it was one of two labs in the country he felt gave dependable results. my 2nd test was very highly positive.

i would recommend igenex and central florida research lab. my local lyme support group just sent out info on a new lyme lab test which is being done only at the lab in florida. that new test is supposed to have very accurate results, better than all our previous ones i think. their contact info is:

central florida research, inc.

245 n seminole avenue

lake alfred, florida 33850

phone: [phone]

fax: [phone]

[color=#003399]www.centralfloridar

do get tested at one of these two labs-it is worth an out of network or out of pocket. i had to pay 100% out of pocket for it, and i think that was $195. best money i ever spent! i could hardly get out of bed and had difficulty remember basic things. i had contant fasiculations, peripheral neurapathy, numbness on my legs, pins and needles, burning sensations on my face sometimes, etc, etc. now that i have been treated i unfortunately still have some tingling and muscle twitches and muscular pain, but i am now getting straight a's as i have gone back to school to become a nurse, which is an absolute miracle in so many ways. i am able to walk my kids to school and feel mostly normal now. i also have the fibromyalgia diagnosis, but that is also much improved since antibiotic therapy, which i am still undergoing.

i understand how difficult it is and how expensive this is. stay strong, and do your best to get the best available medical care. i had to do my own research and be my own advocate, because i faced some of the same things you are. i had many opinons and saw three neuros, three rheumies, and 2 infectious disease docs. you will get through this! i was so sick for more than two years with no diagnosis. it was awful, but many good things have come from it, especially an appreciation for life and compassion for people.

feel free to pm me if i could help with anything!!

[charebec65]

Soldier'sWife,

I agree with the others regarding the second opinion. Keep in mind though that if you are ever DXd with MS that it's not necessarily a career ending DX. Most people with it have the relapsing remitting variety.

For many people, the road to an MS DX is a very long one. It took 6 years and 4 neuros for me to get a "probable MS" DX. The first 3 had serious god complexes. It wasn't until the third one that an MRI and evoked potentials were ordered and then the MRI was done without contrast. On top of that, he only did the head and not the spine even though most of my sx are spine related. When I went back in for the follow up appointment he accused me of not going for the tests just because he misplaced the results. When I described what the tests entailed, he said, "Well, in (however many) years I've not had an evoked potentials be abnormal so I'm sure yours is fine. It is all in your head. Here, try these for the parasthesias. (neurontin)." I left in tears that day as it had already been a really frustrating journey.

Well, the next time I flared I asked my PCP for a different recommendation and told her what that doc had said. I'd requested that my records be forwarded but since they weren't I called the old office and demanded that they have them ready for me to pick up the next days since I had an appointment and had been trying to get them to mail them for 2 months. I was shocked when reading the DX in the diagnosis area of the records that neuro who had told me is was all in my head. He had written "Probable Multiple Sclerosis"

Neuro number 4 was nice but it took so long to get into see him that I was asymptomatic by then. My PCP had put me on a course of prednisone which helps my SX. He said that there was not point in trying more tests at that point but to call him the next time I became symptomatic and we'd do the LP, MRI w/contrast, etc. I'm now about 8 years into it and I've not gone back to the last neuro. I've chosen to deal with the symptoms as they come with prednisone and my doctor thus far is working with me. My SX are not the same with each exacerbation and witht the one I"m going into now I'll probably go see him.

Good luck with your quest. It's very frustrating but try not to let it stress you. Just keep going on with your life. See if you can find an MS neuro associated with with your military facility and get a second opinion. Keep your chin up!

[msunderstoood]

Hi,

I am a nurse with MS. I was diagnosed in my second semester of nursing school. I am 37 and was diagnosed in 2001. I will tell you to hang in there. People will tell you what they think you should do, how they think you should work, what is best for you. Know your body, know what you can/can't do, find a good neurologist that listens to you as well as any Dr. that you see. If they don't treat you the way you should be treated get rid of them.

I have made adjustments to my career. I wanted to work in geriatrics when I finished school but ended up working in a NICU (smaller patients, less lifting, easier). I worked nights which I have found added to my fatigue but wasn't ready to go to a day shift position. I have adjusted my hours and schedule as needed trying to find what combination worked best. Sometimes working 3 days in a row then having 4 off worked, currently I work 2 then have a few off then work 1. It all depends.

I work in an institute that has a separate time bank for people with Chronic Illnesses. It gives me about 9 months of sick pay every 5 years. The first time I had an exacerbation I used most of that up. Fortunately it renewed the next year.

I recently left my position in the NICU for a job I thought might accomodate my illness a little better. I was trying to think ahead for the future. It was for the most part a day job, I felt a lot better. It is a desk job tha has allowed me to go back to my old unit and pick up overtime, something I couldn't do a whole lot when I worked there. I miss taking care of patients though and I miss my night friends that I worked with. My old job beckons me every now and then.

The most important thing for me has been accepting that I need rest when my body tells me to slow down. I have come to love naps much like Garfield the cat. I am learning how to manage my stress (this has helped a lot but has been a hard lessong because I love to save the world and worry about everyone I know).

I have great supportive friends in my life. The ones that weren't bailed out after the first time I got sick. (In the grand scheme of things 1 or 2 less Christmas cards to send out). The people that stepped up to the plate for me were blessings. I didn't realize how many great friends I really had.

Know that you can do this. Just learn to manage your symptoms. There are moments in this disease that have taught me humility and grace, both so far a blessing.

I know sometimes I have trouble with opening IV bags. Something you wouldn't think would be troubling until your in the position of not being able to open it. (At the time I was to weak to open it) It wasn't until someone handed me scissors and said "just use these"... I thought for sure I wouldn't ever make it thru my first year. You adjust and find work arounds, be creative! Sometimes there are easy solutions for every problem you may or may not ever encounter.

If you would like to chat more just let me know. Hang in there. Don't overload yourself with information (I did that and scared myself to pieces). Know that your disease is exactly that... yours. It can be different for every person. My favorite quote about the disease is "I have MS, it doesn't have me".

Hang in there!

[TracyB,RN, RN]

What a great bunch of replies & I'm not even the OP.

I think I learn a little something new each time here.

[southern rn]

Just thought of something I wanted to add- this may sound strange but if you don't have life insurance look into it before you see a second MD or have a diagnosis. I know my sis was unable to get it with her MS diagnosis even though her life expectancy is the same as mine. With wanting to conceive life insurance on both partners is a good idea anyway. Just a thought

[msunderstoood]

Great suggestion about the life insurance. I would also add if you haven't gotten it already add to the list disability insurance as well. Fortunately I had mine before getting the diagnosis but thinking about career changes outside of the hospital makes me worry about insurance changes, life insurance, disability insurance... I know as long as I don't lose coverage most insurance will cover my MS. Disability insurance has been an issue but there are companies that offer it up front without qualifiers you just have to be aware of that being an issue beforehand. It wasn't something I was even thinking about as I was being diagnosed.

Best!

[Charity, RN, APRN]

Just thought of something I wanted to add- this may sound strange but if you don't have life insurance look into it before you see a second MD or have a diagnosis. I know my sis was unable to get it with her MS diagnosis even though her life expectancy is the same as mine. With wanting to conceive life insurance on both partners is a good idea anyway. Just a thought

not only that. I made sure that I got disability insurance before I went to my neuro guy for my MS workups!

[Pamela8]

Hello All

I wanted to add this link here for anyone with MS, with a family member or friend with MS, and also good for all health proffessionals to know.

http://www.msaa.com/

The MS association is the most wonderul, supportive one in the US. They have a toll free number you can call to ask questions, or just to talk for reassurance.

They also will send out adaptive equipment for free on loan. They sent me cooling equipment (vest, writst bands etc) and also grab bar for bathroom and sliding shower seat.

They also asssist people with no or limited insurance to get an MRI.

mjckinkc-glad you mentioned the better lyme test. On an MS site I'm a member of this is brought up pretty often. Some people have had regular lyme test that was negative only to find later that they had lyme all along and were being treated for MS.