Any Advice On My Next Move?

[blsvlo]

Hello my name is Lisa and I have been reading this forum for over a week and wow most of you sound like my story.

I have multiple sclerosis and was diagnosed in aug 2005. My family and I have ajusted to the lifestyle and then comes this mysterious happening .

Feb 22 2007 I noticed I became very very fatigued and said I have to go lay down. I notice my heart racing and I have a blood pressure cuff and I checked it. My heart was around 116bpm. I thought I was ok and I woke up the next morning around 4:30am to go to the bathroom. Was fine and walked (yes I said walked) in the kitchen and all of a sudden it was like my body went into overdrive complete trauma wow can't even explain. It was so bad I told my husband to get someone here to watch our kids and take me to the hospital I am dying...... Everyone in my family knows I don't go to the hospital expecially our local one. The last time I was there was when I was dx with ms. Well so they proved how dumb they are again... Kept me there for 3days and did nothing but monitored my stats. They did orthos about 5 times.

They said I was ortho ( at that time I didn't know what it was) Then blamed dehydration and filled me with 5 liters of fluid and guess what it didn't do anything and they quit trying...I said let me go home...

That morning with the episode that sent me to the hospital I haven't walked since.. I cannot stand my legs are very heavy and I have to drag them and my heart races... In the bed ever since

My neurologist did another mri of brain and spine.... new lesion on the thoartic spine..but he swears it has nothing to do with OI...

So after reading about pots and the tilt table i am on a rampage trying to get a cardiologist and a tilt table done.

So I did and of course it had to be done at that horrilbe hospital where 2 weeks earlier that didn't know what to do with me.

First of all the tilt was nothing like what I have read about...where the big hospitals do them.. The whole thing was maybe 20mins and most of it was a nurse standing in front of me telling me that all it is is hyperventilating..

She was saying you are doing this to yourself.... I do believe my heart rate was a little higher than usual because if I wasn't strapped I would have knocked her teeth out...

So the doctor runs in a second and they tell him what they thought and then he's say for me to go see a phyciatrist Sends me home on Zanax.... Now that is on my record

This is what I need to know>>>> He said because my heart rate was going extremely high and my blood pressure raised also and he said with conditions like POTS the blood pressure drops....So you must be having Anxiety

Ok so my husband rolled me out to the van and I lost it, I cried all the way home. Then I got myself together and I said lets look into anxiety because I know that can be a horrible condition to have also so lets get it fixed...I was willing to except the news...

Heres what I did got back in the bed and became my own doctor

Nothing fit me except OI.... I have been taking thorough records everyday

I also decided to sing "JESUS LOVES ME" and look at the pictures of my beautiful little girls while I took my stats laying down, sitting up , standing....I will give examples and they have been very consistant..

3/5/07 106/65 71

133/88 87

137/95 114

as soon as I layed down it went to 105/61 61

3/7/07 105/64 78

128/88 97

134/91 116

3/11/07 110/69 76

117/80 96 with 2 min. standing

122/86 114 with 5 min. standing

I could not stand any longer than that....my legs were extremely tired and hurting

106/64 70 as soon as I layed back down

what baffles me is the blood pressure rising instead of falling..... I am very symptomatic and can feel in my head while sitting on the computer at times that my heart rate is rising...

I live in the Kentucky area and I have the choice of Cleveland Clinic or Vanerbilt..any advice!

so sorry I had a lot to say,,,,, I need to know I'm not crazy....All advice appreciated PLEASE

sincerely Lisa

[Leigh]

I read your post and I couldn't help but think of my long saga of getting diagnosed, which is the case for many of us here. What strikes me about your post is the MS diagnosis. Did they diagnose you on about 20 factors? Because according to Cleveland Clinic that's what it takes.

I was kind of diagnosed with MS before I hit the clinic and the Mellon Center told me I probably had POTS. Doctors love to tell women they have depression and anxiety. I almost accepted that until they found a lesion in my right frontal lobe and said I had MS. Turns out it's a watershed that looks like MS but is a result of a bad episode. The Mellon Center sent me to Dr. Fouad and within my 2-day stint there as an outpatient, I had a diagnosis and treatment plan.

Unlike most people on this site, I have been fortunate enough to be on the mend. I believe I am actually recovering! I haven't had an episode in 1 1/2 months and I used to have them several times a day!

What also strikes me about your post is the bp rising. This is also the case with me! When I pass out, my bp skyrockets to stroke levels, which always freaks out paramedics. Well, not now that they know me...

I don't know about Vanderbilt, but I have full confidence in the syncope clinic at Cleveland Clinic. The staff there is great, with the exception of a medical assistant who needs an attitude adjustment. But she's only there for history...

~Leigh

[nikigrl8883]

hi i am sorry to hear about your troubles my hr and bp does very similar things as yours they all said i had anciety too until i had the ttt....i have a question for you....when you were diagnosed with ms was it from a lesion on your brain or just your spine? i think i have ms but my brain mri was normal i never had a spinal mri... i am dead tired all the time now i could sleep all day long of course i wake up every few hours but i feel liek im dying

[blsvlo]

Thank you so much for your advice..... the ms diagnoses was I went to the er strangly enough about the symptoms close to a stroke but severe pain down my left arm and in my shoulder...was experiencing tingling and numbness in my fingers for some time before this... I also had symptoms usually only signs of ms like the shocking sensation going down the spine...(llerhimitts sign)... So they did alot of testing... one was a mri of the brain a ct scan a spinal tap they put me through it ....the mri showed 6 lesions on my brain they were almost positive they were ms lesions and then 1 weel later the spinal tap results came in and showed most likely ms also.... I have learned that those are usually the test to be pretty positive if you have ms or not...... Been to 3 neurologist for opinions and they all confirm it... . recent mri shows more lesions and 3 now on my spine.... maybe this could help with the ms thing.... I do appreciate all opinions of what I should do.... thank you lisa

[ellen]

Lisa-you have come to the right place! Don't give up, you will find alot of help on this site. We are not all doctors, but we have all dealt with them

I just visited my ALLERGIST, who is wonderful and has been treating me for 12 years. When I told him I had been diagnosed with POTS (with his Harvard diploma on the wall), he said had never heard of POTS, and listened attentively and asked questions.

Doctors are just learning about dysautonomias, so don't be discouraged, there is hope.

When I found this site, I got enough information to go to my PCP, he sent me to a cardiac EP, I got diagnosed right in his office, no further testing, I'm on Florinef and I am doing quite well. Welcome to the forum!

[pat57]

cardio sent me to shrink- shrink sent me to neurologist, neurologist sent me to Electrophysiologist. BINGO- we have a winner!

I wonder tho ,MS will make you weak, and it is often a flare and remiting cycle. Beats me, but you "should" go to either Cleveland Clinic or Vanderbilt and see what they have to say.

good luck!

[Guest dionna]

i will do some research for you and get back to you on what i find out. hugs to you and welcome to the forum.

dionna

[Rachel]

Hi Lisa,

Welcome to the forum. I'm glad you found us. I hope that you can find good information and good friends here.

I hope that you can find a doctor who will work with you to find out exactly what is going on without blaming things on anxiety.

About the rising bp - sometimes when the heart rate increases to compensate for the veins in your legs not constricting then it will actually raise your blood pressure. You mentioned at one point that you weren't able to stand up for more than 5 minutes without the symptoms becoming so bad that you had to sit down. So it is possible that if you had stayed standing (if you had been safely on a tilt table) that your blood pressure would have dropped a few minutes later if the heart could no longer compensate.

I'll add that on my tilt table test (I was diagnosed with both POTS and NMH) my heart rate went up immediately and my bp slowly went up for about 8 minutes. After that my bp just kept dropping and dropping.

Hope all of that made sense!

Have you looked at the print out of your heart rates and bp during the ttt? If not, it would probably be beneficial to request your records from the hospital. You can then look them over yourself and see what is going on.

Again, welcome to DINET.

Rachel

Edited March 14, 2007 by Rachel