Where to get help with possible MS?

[hsirt]

Hi All,

I am posting this to hopefully get some advice regarding my symptoms. I am at the end of my rope and I am stuck.
It started about 3-4 years ago with occasional episodes of random places going numb - area of the bottom of my left foot, area of my scalp, half of my tongue, with episodes slowly getting worse. These episodes would come about once every 5-6 months. The last year has been the worst, I have noticed the episodes are more frequent coming every 2 -3 months, where there are times when my legs give out on me. Migraines every day, extreme fatigue, sleeping 12 + hours a day. Random jerks of extremities. Also severe pain in both legs. It is affecting my work, This is troubling since I am an RN and work 12 hour shifts sometimes constantly moving. By an hour or 2 in I am walking with a limp because the pain in my legs can get horrible. It isn't just at work, though, at home I have to do housework in spurts or I am laid out on the couch and can barely move my legs.

I have brought up my symptoms to my doctor and he laughs at me, very frustrating and I feel embarrassed to even bring stuff up to him because I know he will laugh! I have tried to switch doctors and there was a problem with my insurance.

I was in the ER in Jan over my legs being so weak when I walked I looked like a baby deer. Luckily the doctor on duty was a doc I worked under for RN clinicals, he ordered a CAT scan and it showed nothing at that time. He was unable to do an MRI due to insurance reasons (grrrrr) but he said to go to my doc and get a referral for a neuro and an MRI because given my age (27), symptoms, family history, he suspected MS. I did this and again, my doc did NOTHING.

I am so frustrated and I feel I have nowhere to turn. I have the number for the Multiple Sclerosis Foundation but it seems like they only refer to persons who already have a diagnosis. Most Neuros need a referral to be considered.

Please, please, if anyone has any advice I am all ears!!

Thank you in advance.

[kwarendorf]

I will second the nomination of Dr. Sadiq as the most perfect MS Doc on the planet ever! :-)

Kyle

[HVAC]

If I could have my dream Dr. it would be Dr. Sadiq in NYC. I have several friends who travel to him from NC.

I have MS it took me over 40 years to get a diagnosis. It took 6 years to be diagnosed with Cancer.

Our medical system needs Doctors who can do more than their specialty. They also need to believe patients.

My Doctors used to label me as melodramatic until I ended up with Stage IV Cancer now they see me right away.

Alex

[kwarendorf]

Hi -

I'm not sure what your access is, based on insurance, but you need a new PCP immediately. Your current PCP is an a**.

I agree with ess, that while contrast is very helpful, it is not required. All lesions will appear without contrast, new and old. The contrast makes the new ones light up, or enhance. If you have some lesions that enhance and some that don't, you can satisfy the dissemination in time component of the McDonald criteria.

Kyle

[essdipity]

I agree with ksm that you need a different doctor, both primary and neuro. If you need a referral for a neuro, do what you have to do to make that happen, because otherwise nothing will happen.

I don't think that contrast with the MRI is essential, since the purpose of that is to differentiate between new and older lesions. Right now you need to see if there are *any* lesions that could indicate MS. To do this, the MS protocol is required--that provides thinner slices or views than general MRIs do. CT scans are basically useless for MS purposes. Ideally you'd have a with and without contrast, MS protocol MRI of brain, C-spine and T-spine, using a 3T magnet machine. However, don't settle for less, at the outset, than a brain MRI, MS protocol, on a 1.5T machine.

You also need a thorough, and I can't emphasize this too much so I'll say it again--thorough neurological examination. This should take possibly half an hour. These 5-minute jobbies that lazy neuros do are deplorable and will not help. A good neuro will order blood work for a lot of mimics of MS, and test your blood in general. Depending on the outcomes of everything thus far,  he or she could order EMG/NCS tests (basically rule-out), and also Evoked Potentials and LP (basically rule-in). The LP really is needed only if things are not clear at that point. A positive result could nail an 'almost sure' diagnosis and make it sure. Negative would leave you in limbo, all other things being equal.

So get busy and get started! Keep us posted.

ess

[ksrn19]

ok, I'm an RN as well, and recently diagnosed with MS. If your doctor laughs at you....it's time to find a different doctor. you need an MRI to diagnose MS -WITH contrast. If he won't even get you that then you need to find one who will. You'll need more diagnostics done even if you have lesions in your brain esp since you've had migraines. Spinal tap and evoked potential tests as well as some serum tests. BTW- one of my critical care docs laughed at me when i asked him to do a neuro exam on me b/c I thought i had MS, he said I need to find a boyfriend lol. 3 weeks later, I was rubbing my MS diagnosis in his face. You know your body better than them, advocate for yourself.

[Dagun]

Hi hsirt, I´m sorry you are having a rough time. But firstly I have to point out that this poll is not something that anyone can answer at this point.

I know first hand how difficult it is not to know what is going on in your body, I have been having many, many such symptoms for 3,5 years now, and I still don´t have a diagnoses. This can be many things, and there are so many mimics that have to be ruled out before anyone would say "possible MS".

Even if you have anxiety, that could add on symptoms, that is why it is SO necessary to calm down. So because you are stuck with this doctor, I would recommend that you would take a time to try to relax and not think to much of this for a while. I know it is difficult, but it is necessary to calm down before you talk to him again.

Then when you are ready you would ask him what he think´s this is. You would also be ready what to ask him other questions, but avoid saying that you think you have....what ever you think it is. Just try to convince him to let you at least see a neurologist to help you figure this out. Or at least do a blood test to see how your B12 levels and other stuff are.

Wishing you the best,
Dagun