2nd flare up, no real MS diagnosis yet

[MyNameIsB]

Hi all!

I'm B and I am a 32 year old mom of 2 kids, as well as a psychiatric nurse for the past 6 years. Over the past 6 months I have had two instances for about 2 weeks each where I have had some extremely concerning symptoms...my gait has been unsteady (I am walking around like I am drunk, but clearly not drunk...) my speech has been INCREDIBLY affected - this may be the most frustrating symptom for me because writing has always been my thing. Words have always been my thing. Now I find myself straining to get anything out of my mouth (or fingers, if I am typing) at all and I just sit there shaking my hands in panic because I can't figure out how to say what I am feeling or thinking.

My second flare up happened a week and a half ago and actually included my first dose of neuropathy (I'm all set with that, thank you very much!) It started with tingling/burning in toes and feet. Then add extreme sensitivity to skin on tops of feet and on lower legs. Then electrical shocks going down both legs. Then sharp pain at joints. All of these things happen simultaneously at night. I was in the hospital for 5 days while they ran a goaded bunch of tests (brain MRI = clear...neck MRI = a few slipped discs and a herniated disc that are not responsible for the symptoms according to docs, EEG= okay according to PCP but neurologist was on vacation by then and I would like more explaination. There are too many symptoms. Just because the few rests we have run aren't showing lesions doesn't mean I am crazy. I can't find words, I am weak, my legs are in extreme pain I have never felt before, my ability to concentrate is gone...

I have a lumbar puncture scheduled for next Tuesday when the neurologist gets back but I don't know what to do until then. My husband has to work and it is just me at home with my kids. I have no one to help out. I am so stressed the symptoms are being exacerbated.

Has anyone else gotten such resistance from their PCP? I feel like everyone but my neurologist (who is on vacation) thinks I am med seeking or just crazy.....

I want to scream!!!

Trying to keep it together because everything else just makes it worse.

- B

[MyNameIsB]

Hi all!

I'm B and I am a 32 year old mom of 2 kids, as well as a psychiatric nurse for the past 6 years. Over the past 6 months I have had two instances for about 2 weeks each where I have had some extremely concerning symptoms...my gait has been unsteady (I am walking around like I am drunk, but clearly not drunk...) my speech has been INCREDIBLY affected - this may be the most frustrating symptom for me because writing has always been my thing. Words have always been my thing. Now I find myself straining to get anything out of my mouth (or fingers, if I am typing) at all and I just sit there shaking my hands in panic because I can't figure out how to say what I am feeling or thinking.

My second flare up happened a week and a half ago and actually included my first dose of neuropathy (I'm all set with that, thank you very much!) It started with tingling/burning in toes and feet. Then add extreme sensitivity to skin on tops of feet and on lower legs. Then electrical shocks going down both legs. Then sharp pain at joints. All of these things happen simultaneously at night. I was in the hospital for 5 days while they ran a goaded bunch of tests (brain MRI = clear...neck MRI = a few slipped discs and a herniated disc that are not responsible for the symptoms according to docs, EEG= okay (according to PRO - neurologist had left for vacation by the time she gave me results and she is extremely unsympathetic and does not agree with MS testing we are doing) so she discharged me home the second he left yesterday. Still in pain. Still unsteady gait. Still not able to speak correctly. Still dropping things (I actually spilled a cup of boiling hot tea on my hand the day before I was discharged because of my problems gripping things and they had to treat it). I have a lumbar puncture scheduled for next Tuesday in the outpatient clinic as soon as the neurologist gets back but I don't know what to do until then.

The worst part is I am afraid to tell my husband how concerned I am because he is already worried enough about me not feeling well. He has no idea how convinced myself and the neurologist are that it is MS even though the Brain MRI was lesion free. I have taken care of patients with MS and I know what I am feeling myself. Warm water feels boiling hot. Slight touch feels like knives on my feet and legs. My entire system feels like it is attached to a live wire at night.

I don't want to ask for pain meds because I don't want them to think that is all I am after. I am so frustrated and so lost. It sucks. I am sorry bit it does.

[euphoniaa]

Hi B and welcome, although, of course, we're sorry your current crises have sent you here. I wish you well in your journey through the diagnostic process. In the case of MS, that's often a torturous (literally) and confusing trip!

As an FYI - I deleted your duplicate posts and combined the other two into a single thread here, although they're similar enough that you may want to edit them yourself. If you do, just click the "Edit" icon and you can edit or delete parts as you wish.

There is plenty of information here -- both good and bad -- but with your medical background you have a good start on trying to distinguish between them. Plus, there are exciting new ideas around that may actually turn out in the future to have more importance than they first appear...or not. We do try to keep an open mind on posting here at TiMS.

Anyway, feel free to explore all the many subforums and ask as many questions as you want. Good luck on your journey!

[lyndacarol]

I'm B and I am a 32 year old mom of 2 kids, as well as a psychiatric nurse for the past 6 years. Over the past 6 months I have had two instances for about 2 weeks each where I have had some extremely concerning symptoms...my gait has been unsteady (I am walking around like I am drunk, but clearly not drunk...) my speech has been INCREDIBLY affected - this may be the most frustrating symptom for me because writing has always been my thing. Words have always been my thing. Now I find myself straining to get anything out of my mouth (or fingers, if I am typing) at all and I just sit there shaking my hands in panic because I can't figure out how to say what I am feeling or thinking.

My second flare up happened a week and a half ago and actually included my first dose of neuropathy (I'm all set with that, thank you very much!) It started with tingling/burning in toes and feet. Then add extreme sensitivity to skin on tops of feet and on lower legs. Then electrical shocks going down both legs. Then sharp pain at joints. All of these things happen simultaneously at night. I was in the hospital for 5 days while they ran a goaded bunch of tests (brain MRI = clear...neck MRI = a few slipped discs and a herniated disc that are not responsible for the symptoms according to docs, EEG= okay (according to PRO - neurologist had left for vacation by the time she gave me results and she is extremely unsympathetic and does not agree with MS testing we are doing) so she discharged me home the second he left yesterday. Still in pain. Still unsteady gait. Still not able to speak correctly. Still dropping things (I actually spilled a cup of boiling hot tea on my hand the day before I was discharged because of my problems gripping things and they had to treat it). I have a lumbar puncture scheduled for next Tuesday in the outpatient clinic as soon as the neurologist gets back but I don't know what to do until then.

The worst part is I am afraid to tell my husband how concerned I am because he is already worried enough about me not feeling well. He has no idea how convinced myself and the neurologist are that it is MS even though the Brain MRI was lesion free. I have taken care of patients with MS and I know what I am feeling myself. Warm water feels boiling hot. Slight touch feels like knives on my feet and legs. My entire system feels like it is attached to a live wire at night.

I don't want to ask for pain meds because I don't want them to think that is all I am after. I am so frustrated and so lost. It sucks. I am sorry bit it does.

Welcome to ThisIsMS, MyNameIsB.

Being a nurse you probably know, your symptoms are common to many conditions, MS is just one possibility. But MS is a diagnosis of exclusion, made only after other more likely causes have been ruled out.

One of the possibilities for your symptoms is vitamin B12 deficiency. Any person at any age (even 32!) can develop B12 deficient. The symptoms of MS and the symptoms of B12 deficiency look exactly the same; the two conditions can only be distinguished by testing (perhaps this was done during your five-day hospital stay?)– there is NO definitive testing for MS; there IS testing to uncover B12 deficiency.

I urge you to read the book, Could It Be B12? An Epidemic of Misdiagnoses by Sally M. Pacholok, RN, BSN, and Jeffrey J. Stuart, D.O. (This may be available at your library.). http://b12awareness.org/could-it-be-b12 ... diagnoses/
Or… perhaps it's easier to watch a YouTube video:



Diagnosing and Treating Vitamin B12 Deficiency: "Everything You Want Your Doctor to Know about Vitamin B12" (52 min.)

@25:50 On-screen statement: "It is medically negligent not to rule out B12 malabsorption in symptomatic patients."


The 4 initial tests for B12 deficiency are not expensive:
From page 156 of What's Wrong with My Child? by Sally M. Pacholok, RN, BSN and Jeffrey J. Stuart, D.O. (their second book):

Costs (approximate) of commonly used blood tests for B12 deficiency:

Serum B12 (outdated test)… $50
HoloTc (newer, more reliable)… $118
Serum homocysteine… $147
Methylmalonic acid test (serum or urinary form)… $150

Again, you probably know, a person should not take vitamin B supplements before testing as this will skew test results.

In my opinion, these tests should be routine for anyone presenting with neurological symptoms since it is estimated that 40% of the American population has suboptimal B12 levels; this is not a rare condition. If your PCP is unsympathetic and uncooperative, perhaps it is time to replace her.
At the very least, since a lumbar puncture is already scheduled for next Tuesday, perhaps you could ask the neurologist to order the B12 level to be measured in the spinal fluid. (Ask him to order the other tests –Hcy and MMA)

As for finding someone to help out… perhaps a neighbor? A former coworker or friend? Could a minister or priest suggest a willing church member? We are here to listen and offer ideas. Please let us know how it goes – we wish you all the best.

[MyNameIsB]

Hello! Thank you for the quick response! I actually already had B 12 deficiency ruled out early on. I hope the suggestion helps another reader though!

[MyNameIsB]

Thank you so much! I am really jumpy right now and typing on my phone from the couch is not ideal...

- B ;)

Hi B and welcome, although, of course, we're sorry your current crises have sent you here. I wish you well in your journey through the diagnostic process. In the case of MS, that's often a torturous (literally) and confusing trip!

As an FYI - I deleted your duplicate posts and combined the other two into a single thread here, although they're similar enough that you may want to edit them yourself. If you do, just click the "Edit" icon and you can edit or delete parts as you wish.

There is plenty of information here -- both good and bad -- but with your medical background you have a good start on trying to distinguish between them. Plus, there are exciting new ideas around that may actually turn out in the future to have more importance than they first appear...or not. We do try to keep an open mind on posting here at TiMS.

Anyway, feel free to explore all the many subforums and ask as many questions as you want. Good luck on your journey!