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Avatar universal

So lost and confused Part 2

I just got back from a 3.5 day hospital stay and I’m still the same as I went in.  I originally went into the emergency room on Monday because I couldn’t take my back pain and needed better sleeping pills.  Well, they admitted me and ended up transferring to one of their other hospital promising me better care.  What a crock!!!

Not only did they send almost 30 miles from home but I didn’t get the best of care.  I kept telling them my back and right leg hurt and they basically would only give me Tylenol or Advil which just pissed me off.  I refused it.  I mean I already know that it doesn’t work so why keep overworking my liver for nothing.  Basically treated me like a drug addict.  So frustrating.  They ran tests and a ton of MRI’s and they said the MS hadn’t spread so I guess that good.  But I’m still stuttering and my back and legs are still hurting.  They sent me home with 5 new meds and I really don’t have any faith in them because I was taking them while I was there and felt nothing.  They also still haven’t told me what type of MS I have.

The only good thing or weird thing that happened while I was there was that they said that they didn’t think I was diabetic.  That’s right they said not diabetic.  So I’m sitting there trying to grasp that concept and beginning to wonder if maybe I don’t have MS.  I don’t know anymore.  You have faith in doctors and then stuff like this happens makes you question everything.
16 Responses
198419 tn?1360245956
Hi there,

Well welcome GE!  My you do have a lot going on, and this dx must of been a blow to you.  I have a few questions.  Did you start the Rebif? If so, when did you start?  I'm asking this because I'd like to get a feel for where you are at w/the meds, how long it's been, etc.

Sounds like you were dx'd quickly.  What did the reports say in reference to demyelinating lesions? ARe they in your brain and your spine? If you are able, please describe your pain.  The narcotics will not work for CNS related pain from what I've learned here.  We have an excellent write up by a pain doc in our health pages - please read this, and let us know what type of pain you have going on.

I was dx'd quickly.  What I found difficult to distinguish between was MS symptoms and the side affects from Rebif.  I'm not sure if this is what you have going on, but maybe once you fill in the holes a bit for me and the others we can provide more advice.  

You have given us a lot, but we just need a little more. You say that your back hurts, what did the MRIs say reference your spine? Maybe you have more than MS at work here.

You were more than likely dx'd with RRMS.  If I were you I'd line up a few simple questions for this appt. along with a list of symptoms.  Since you have been told you don't have diabetes, you now are doubting the MS dx too right? Well, I do understand this sort of though. It's such a very difficult disease to wrap your head around, and there is not 1 single test for it so your feelings are quite understandable.  Please let your Dr reassure you.  Ask him or her straight up "what tests determined my dx."  Tell your Dr. how you are feeling, but gather your thoughts 1st so you he clearly understands where you are coming from.

Now for the diabetes.  Does an MD follow this? You should be getting checked regularly.  

I'm sorry you are in the middle of what seems to be a flare, or just lingering MS symptoms, I'm sorry the ER did not take good care of you.  I would have thought they would have started you on steroids.  You will learn so much here and additionally gain so many friendships. Try to remain as calm as you can through the stuttering, it's horrible I know.  I didn't have that, but had slurring, and I understand. It does work you up.  Stay as "under stimulated" as you can.  Don't go around anyone or any place that could possible excite you - that is my suggestion. It won't make it go away, but may help you get through it better.

Welcome aboard! Hope to see you around,
p.s. Our health pages are located toward the right corner of the forum - check them out!
Avatar universal
I'm very sorry to read about your pain and the poor treatment you have received from the health community. No wonder you feel lost and angry.

But I do have some comments and questions that may be of interest.--- First, who in the heck diagnosed you with MS? You may well have it, probably do, but I didn't read in your posts anything about the mimics of MS being ruled out. I also didn't see reference to a radiology report on your MRIs, or whether they were done using the MS protocol. Maybe I'm missing something (that sure happens), but I don't see that you've been given a full workup for anything. Have you even had a comprehensive physical exam that tests for neurological deficits?

MS is a complicated disease, and it often takes a long time to zero in on. Do you have copies of reports on all your tests? It would be helpful for us to know what you've been tested for and what the results have been. It's most unusual for an MS patient to have pain everywhere at once. I'm also concerned that you've now been told you don't have diabetes. If your blood sugar was at one time over 500, let alone over 900, that's extremely serious, to say the least. Diabetes doesn't just go away. Are you still on insulin? MS and diabetes cannot be confused with one another. The only symptoms they might have in common are neuropathic pain, usually in the legs and feet, and vision issues. If blood sugar is controlled the vision problems usually improve a lot, but not overnight.

In any case, it should be easy for you to find out if you are really diabetic. Your primary doctor can settle this once and for all, so I advise you to lose no time with this. It's extremely important to your health.

As to MS, I haven't heard of someone hospitalized who still hasn't been seen by a neurologist, but nevertheless is given an MS diagnosis. I also have never heard of Rebif being prescribed without a neurologist's recommendations.

Would you tell us what 5 medications you were recently given? I'm wondering if any of them are actually used for MS.

Hang in there, you're among friends here. We'll try to give you some good advice as you wait for your next appointment. And Shelly's recommendation that you read our Health Pages is a good one. There's lots of good information that can help you sort out your symptoms and let you know more about MS.

Avatar universal
Well GE, I can't really add anymore to Shelly & ess, they've given you great answers and lots to think about.

I'm just glad that you found us and hope we can continue to help you deal with all you are going through right now.  Always feel free to ask us anything, we will do our best to find the answers.

Take care,
Avatar universal
So let me see if I can answer your questions.  Hopefully I won't miss anything.

These are all the medications I'm on:

1. Rebif 44mcg - I inject myself 3 times a week. This was prescribed by a neurologist while I was in the hospital at the end of September.

2. Gabapentin 300 mg - I take 2700 mg daily.  This medication was prescribed a week after I was diagnosed with MS.  It was prescribed by my primary doctor.

3. Tramadol 50 mg - I take 200 mg daily. This medication was prescribed a week after I was diagnosed with MS.  It was prescribed by my primary doctor.

4. Naproxen 500 mg - I take 1000 mg daily.  This medication was prescribed a week after I was diagnosed with MS.  It was prescribed by my primary doctor.

5. Benazepril 5 mg -  I take 5 mg.  I was prescribed this back in April.  It protects my kidneys and it keeps my blood pressure in check.  I've never had high blood pressure so it's mostly to protect my kidneys.

6. Glimepiride 2 mg - I take 4 mg sometimes.  I was prescribed this back in April for the diabetes.  I check my glucose daily and when I see it's high I take it but if it's okay I don't.  I'm supposed to be taking 2 other diabetes medication but I don't. When I take all of them then I become hypoglicemic (?).  Basically my glucose level becomes too low.

7. B-12 1000 mcg - I take 1000mcg daily.  I was prescribe this back in late September when I was first diagnosed with MS.  They said my B-12 was too low.

8.  Mirtazapine 15 mg - On this one I got it from a psychiatrist.  I am only supposed to take 15 mg but I take 30 mg at bedtime.  The 15 mg just doesn't work.  When I was in the hospital this last time (I just got out yesterday) I asked for a better sleeping pill but they didn't give me anything.  I'm going to try again with my primary.

9. Omeprazole 20 mg – I take 20 mg daily.  My primary prescribed this when I had really bad heart burn.

10.  Amitriptyline 25 mg – I take 25 mg at bedtime. This is a brand new medication.  It was prescribed to me while I was in the hospital this last week.  They gave it to me for depression. The funny this is that I asked for a sleeping pill and I ended up with this.  I guess they thought I was depressed and didn’t tell me.

11.  Oxybutynin 5 mg – I take 10 mg.   This is a brand new medication.  It was prescribed to me while I was in the hospital this last week.  It’s for my MS.  When I was discharged the nurse said it was for pain.

12.  Vitamin D-2 drops – I take 20 drops a day.  This is a brand new medication.  It was prescribed to me while I was in the hospital this last week.  They said my vitamin D was too low.

13. Baclofen 10 mg – I take 10 mg daily.  This is a brand new medication.  It was prescribed to me while I was in the hospital this last week.   This is the drug that is supposed to help me with my back and leg pain.  I read up on it and it take about a month or two to get the full effect.  So till it kicks in I’m screwed I guess because the doctors won’t give me anything for pain to tide me over till it kicks in.

So that’s all my medicine.  Not counting the stuff I am supposed to take on a daily basis.

When I went into the hospital at end of September I was complaining of numbness in my limbs and head.  They initially did a CT in the ER.  The neurologist came down and told me that my brain seemed small for my age.  She said it looked atrophied (sp).  She even asked me if I was in special ed while I was growing up and if I was able to graduate high school.  So I told her that no I wasn’t in special ed and yes I graduated high school and I even did a couple years of college.  She then said it was probably a congenial defect.

At that time she did a complete Neuro exam and then decided to admit me.  They did an MRI, a spinal tap and a ton of lab work.  The MRI showed lesions and the spinal tap came back positive.  That’s how they came to the conclusion that I had MS.  When I was discharged I was prescribed the Rebif and they promised to send me an appointment for their neurology clinic and said it would be soon.  Well that didn’t happen I had to go to clinic 4 times and I was finally given an appointment for December 12, 2008.  I was discharged on October 3, 2008.

So since I haven’t been able to get into neurology I’ve been going to my primary for my MS and she’s been doing what she can.  I’m just grateful she’s trying because when I was discharged they didn’t give me anything to treat the symptoms.

This weeks hospitalization basically went the same way as the first.  With the difference that they said that they didn’t think I was diabetic.  I’m planning to talk to my primary doctor to make sure I really don’t.  The last thing I need is to fall into a diabetic coma.  I had more MRI’s done and the doctor said that the lesions didn’t look like they had spread down my spine and they said I had urinary infection.  That was a surprise because I didn’t have any symptoms.  They treated it while I was in the hospital.

That’s it.  I hope this answers your questions.  Thank you for trying to help.
Avatar universal
Oh and yes I've been given IV steroids.  Not sure which one.  It was given to me the first time I went into the hospital.  It helped with my numbness while I was there but I went home I began to feel worse.  The overall pain began and the stuttering.  The only way I've been able to see a Neurologist is if I'm admitted to the hospital.
572651 tn?1531002957
Greetings and welcome to the forum.  I see Shell and Doni have been in touch with you as well.  I would strongly encourage you to read the health page on pain medicines.  Like you I am pretty new to this and just assumed that popping a pilll would make everything feel better but it doesn't work that way with these drugs.  

If you need to go to the ER to see the neurologist, then go.  Fortunately December is now almost here and your clinic appointment will give you the chance to ask lots of questions.  

In the meantime, stay in touch, ok?
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