Nurses with MS or similar disorders

TracyB,RN, RN · Feb 28, 2007

What about REBIF injections? Are those still being used. I believe to slow the progression of MS??

Go for the 2nd opinion. Even though expensive, worth the money if it gets you a doctor with some compassion & who will actually explain things to you, if NOT ms & hopefully proper treatment if it IS ms.

Good luck.

Jules A, MSN · Feb 28, 2007

I'm sorry the neuro was a putz. I don't understand why they don't order MRI, I guess the cost, sigh. I'd push for a diagnosis or at least a R/O. It would be my opinion that even if it costs you a chunk of money in the end it would be worth it. I agree with NRSKarenRN (great story about MIL) that it is important to figure this out before you decide to get pregnant. If you think it is MS you could consider seeing a MS specialist as your second opinion. Have they done any blood work for the MS mimics like tic-bourne diseases, B12 deficiency etc? That and a MRI would be where I'd focus. If you have a positive MRI along with symptoms a LP isn't always necessary to secure a diagnosis of MS. Do your research.

They do use interferons as well as a few other types of meds in hopes of stalling progression. LDN has been used but unfortunately there aren't any studies completed at this time so the information is anectdotal right now. As with anything related to this confusing disease LDN seems to help some people and not others. Best of luck to you, Jules

gth · Feb 28, 2007

stay positive as my polio is comming back and I still work. A little slower yes but am there every day. Will keep you in my prayers.

george

mammaoftwo · Feb 28, 2007

My doctors thought I had MS, after two MRI's, exam by Neuro and numerous other tests, I was dx with Fibromyalgia. My doctor said a lot of the symptoms were the same for MS. I would seek another opinion for sur. Blessings and best wishes to you.

Pamela8 · Feb 28, 2007

asoldierswife05

I very much understand how you are feeling. The neuro should have ordered an MRI of both head and spine.

I was dxed in 2004 with relapsing/remmitting MS after many years of symptoms. Was told by two neuros I needed antidepressants before this.

My EMG and Visual evoked came out normal, but did have a few lesions, with subsequent MRI's lesion load increased as with symptoms then diagnosed.

I hope you do not have MS, but a suggestion would be to call your local MS society and ask for the name of a good neuro who specializes in MS. You should have a complete workup including MRI's, blood work to rule out Lyme, etc, and possibly a Lumbar puncture. It took me a year to get the courage for the lumbar, I'm such a chicken, it came out neg. for bands but had elevated protein.

Many of us with MS have gone though years of being blown off by doctors, especially woman, sadly.

Its awful having symptoms and being handed a script when you know the med isn't going to help.

So please get the complete work up, get a different neuro.

I too like the previous poster take Low Dose Naltrexone, personal choice as my body is very sensitive to meds and I know I couldn't handle the shots.

Please try and stay positive, IF you do have MS it is not the end of the world, allthough at times it feels like it.

Take care and I wish you the best.

jthewood · Feb 28, 2007

Many of us with MS have gone though years of being blown off by doctors, especially woman, sadly.

It's sad that this is true, but one way to combat it is to take your husband with you to the doctor visits. I held my wifes hand every step of the way 1) to be supportive, and 2) to learn what we were going through. You have to be aggressive about your healthcare these days, everyone on this board knows that. I strongly recommend doing lots of research before your next Neuro visit and have questions ready to ask. I drafted questions and took them with me to my wifes neuro appointments.

a suggestion would be to call your local MS society and ask for the name of a good neuro who specializes in MS.

This is a great suggestion. They were very helpful when my wife was dx'd.

My wife's diagnosis was a little extreme, brain surgery to remove and biopsy lesion tissue, but there was no question when we were done and treatment could begin immediately. The point is, you need to take charge of this situation and get a doctor/neurologist that treats your symptoms seriously, regardless of the dx.

I hope your situation works out for the best and you find a practitioner that treats you well. It may be costly, but having the peace of mind that comes with a differential diagnosis is worth the money. It was for us.

BTW, my wife is begining daily Copaxone shots. Any experience on this from anyone? She took Avonex once weekly for a few years, but got really sick each time she took it and was fed up with the side effects.

Jason

Bridget O'Malley · Feb 28, 2007

Last year I was worked up for MS and it came up negative. I've actually been experiencing the symptoms of another diagnosis (nothing I want to get into right now) and anxiety.

Just wanted to remind you and everyone not to dismiss a diagnosis of anxiety so easily. It is a cumulative thing, and often manifests at times when life situations have improved and we think we are allowed to relax.

I wish the best for you, wife, and I'll send good Karma your way.

You've got my support, for what it's worth.

nurse4theplanet, RN · Feb 28, 2007

Thank you for all your replies.

I did lots of research after my appointment with the PCP...but I was afraid to bring up anything to the MD because I didn't want to be labeled as a 'know it all new nurse', coming in with a preconceived diagnosis. I wanted to just tell him my symptoms and let him do his job. Now, I see that I should have been more aggressive and insistant on some tests to R/O MS/Lupus/Fibromyalgia...which I was told my symptoms are suggestive of.

My PCP did do blood work to R/O vit B 12 deficiency and thyroid probs...all blood work came back normal. I am assuming the EMG was normal as well considering he didn't finish the test and shipped me out the door.

I was curious why an MRI was not ordered. It seems that most pt's experiencing symptoms of MS are sent for one, which also made me think he believes it is anxiety and nothing more.

I don't know if I was tested for Lyme's disease or not.

Another thing I was wondering about was shingles. I have read that shingles can cause neuropathy (but usually where the rash occurs). Sometime back I broke out in a rash on my back that lasted for about a week during an intense period of stress. I never went to the doctor, as it cleared up so quickly and I knew I was under a lot of stress and anxiety. I am now wondering if that rash could have been shingles and may have caused some nerve damage that is causing my symptoms now. I don't know if that is worth mentioning and I am just trying to think of anything and everything that could help explain what's going on with me. Do you think I should mention this to the doc?

I am going to go for a second opinion. I wonder how that will be covered under my insurance. We are going to postpone trying to conceive until I get some sort of answer or a 'go ahead' from a doctor. This whole situation is just miserable. I want to focus on enjoying what me and hubby have been working so hard towards achieving...not worrying about my health. If it is anxiety, then this is only adding to it!

nurse4theplanet, RN · Feb 28, 2007

Just wanted to remind you and everyone not to dismiss a diagnosis of anxiety so easily. It is a cumulative thing and often manifests at times when life situations have improved and we think we are allowed to relax.[/quote']
I do appreciate your statement and I know it is very true. However, one of my symptoms is L'hermitte's sign...a shock like sensation that runs down the spine when the neck is flexed forward, indicative of spinal nerve damage, and commonly seen in MS (as well as other diseases mentioned in previous posts). Coupled with some other neurological symptoms as well. I just find it very hard to believe that my symptoms are just anxiety. Sure, I am prone to being anxious and have experienced typical results in the past...GI irritation, Headaches, Muscle Aches, etc. But this is just very very strange to me and I have read nothing that would suggest that it could be caused by anxiety. If anyone has any info on this it would be helpful. I really think I should go for a second opinion. I don't know why this doc just blew me off and it makes me so angry. I don't know if he did it because I'm a woman, or I'm young, or I'm a nurse...or a combination of all three. I think I will take my husband with me next time. He was very upset about the whole deal when I told him what happened.

southern rn · Feb 28, 2007

I do appreciate your statement and I know it is very true. However, one of my symptoms is L'hermitte's sign...a shock like sensation that runs down the spine when the neck is flexed forward, indicative of spinal nerve damage, and commonly seen in MS (as well as other diseases mentioned in previous posts). Coupled with some other neurological symptoms as well. I just find it very hard to believe that my symptoms are just anxiety. Sure, I am prone to being anxious and have experienced typical results in the past...GI irritation, Headaches, Muscle Aches, etc. But this is just very very strange to me and I have read nothing that would suggest that it could be caused by anxiety. If anyone has any info on this it would be helpful. I really think I should go for a second opinion. I don't know why this doc just blew me off and it makes me so angry. I don't know if he did it because I'm a woman, or I'm young, or I'm a nurse...or a combination of all three. I think I will take my husband with me next time. He was very upset about the whole deal when I told him what happened.

The first neurologist you saw was a putz. Please seek a second opinion preferably with a neurologist who sees lots of MS pts if at all possible. My twin sister who is also a nurse was diagnosed with MS about 6 years ago. I believe I could write a book on it lol. L'hermitte's is pretty indicative of MS and you definately need an MRI- it is the only way to see the classic lesions found with MS- and get one of head AND spine. It may be helpful to start keeping a symptom log now so when you see the MD again they have something objective to read and it won't matter if your nervous and forget to tell him something. See another neurologist ASAP!!

Warpster · Mar 1, 2007

History plus an EMG doesn't tell them much of anything, and it certainly seems like it didn't tell them much, did it?

They needed to do an MRI to check for lesions and a CSF assay to detect sugars. Both are diagnostic for MS.

The neurologist may have thought your symptoms didn't fit the clinical picture for MS and that's why he stopped with the EMG. Did you have blood work drawn to check for other autimmune diseases? Did they do a detailed family history?

Get that second opinion and don't hesitate to go back if the symptoms persist or get worse, whatever they are. He may have the bedside manner of a puff adder, but you deserve diagnosis and treatment. Make sure you get it.

(I have lupus, they blew me off for 13 years)

TrudyRN · Mar 1, 2007

Okay, so I went to see the neurologist today. Doc did a quick exam and then they did an EMG. Actually, they just got through the first part, testing the nerves, and the power went out in the facility!
I had tears streaming down my face because #1 I was nervous, #2 the Doc was abrupt and not friendly, and #3 the nerve stimulation was very painful. Then when the power went out, I asked the nurse (or tech...I'm not sure who she was) if we were going to have to start over and she just rolled her eyes. Then after a few minutes she finally gave me an answer...Yes...and left the room.
The next thing I know, the doc comes in...says everything is fine and writes me a script for Lyrica. It's for neurological pain. He told me that it was probably nothing more than anxiety and to come back if it got worse.
My mind went blank. I just took the script and a sample and left in a daze. I felt like I had been blown off. I WANTED to know that everything was okay, I don't want to be sick...but I don't feel like they took me seriously either. I don't know what I was expecting, if I was expecting anything at all, but I just don't feel good about the visit. Am I crazy?
#1 It is NOT in my head, nor is it anxiety. I am having real symptoms that someone my age should not be experiencing unless something is not right. If it WAS anxiety, my symptoms would have started a looooong time ago...like when hubby was in Iraq or I thought we were divorcing and I had no money and nowhere to go or when I almost flunked out of nursing school for absentism during the whole bit....NOT NOW when everything is great...finished with school, passed NCLEX, and financially stable.
#2 Lyrica? It's for nerve pain AND I'm not having nerve pain. AND you can't take it if you are trying to get pregnant AND I am trying to get pregnant. Did he ask that? No. I think it was more of an effort to pacify me than anything else. Like if I left with something in my hand then I would feel like I was properly treated.
There is no telling how much this visit cost me...and I feel like I got nothing from it. Getting a second oppinion is just going to cost me more...but what if something is wrong? Then again, what if it is nothing and I waste more money to be told the same thing. I hate seeing doctors, and I hate it even worse when they find out I'm a nurse. It's like I get treated much differently...like I'm some kind of hypochondriac.

Unfortunately, neurologists are generally very strange people. They tend to be rude, abrupt, and crabby. Your doc is all 3 so he's probably a great neurologist, LOL. Sorry, couldn't help it. :lol2:

Yes, you need a 2nd opinion, for your own peace of mind.

You also need to call this first doc's office and make your concerns known to his office nurse or him, if they will get him to the phone. Tell him what you told us. Or you could write him a letter and get a return receipt for it so you know he recieved it. Docs need to know how they affect patients and how they can improve. You are, after all, paying for his services. Or maybe you can ask your primary doc to communicate with this schmucky neurologist and get the scoop. If you feel the power outage made your test less than thorough, say so and demand a repeat. Involve your insurer if need be. They don't want to pay for it if you didn't get it. Ask him for an explanation of why he gave you Lyrica, since you have no neuropathic pain. Maybe it's for an off-label use but he needs to explain that to you. Let him know about your pregnancy plans and see what he thinks you should do. Finally, tell him you want to know his diagnosis. Just speak up on your own behalf and require that he tell you, straight up, what is going on or that he doesn't know. Ask him if you need MRI or other imaging, blood tests, etc. Make him talk to you and take you seriously. Take your husband or someone else along with you if you have another visit. Write questions down in advance and carry the paper with you.

Do some research on the net and you will know what questions to ask and be very knowledgeable on various signs and symptoms, as well as alternative treatment approaches.

I wish you all the best.

Also, position your husband standing up, arms crossed, between the doc and the door. Like a bouncer, you know, or a guard. Ain't no doc goin' nowhere until you give hubby the nod that the doc is free to go. Take charge, Woman. You're the Boss!!