The hits just keep coming...

[OhKay]

I just don't feel well lately and have less energy.
I thought I was going to the ER today. I felt like my chest and upper ribs were being crushed, it lasted about half an hour. I wanted to lay down but thought it was safer to stick it out and sit next to my husband.
There is an MS symptom that hugs the body like that (in me, always the chest, no matter my position), but it's always nerve pain- sharp, electric-and has never lasted that long for me. But this was crushing pain.
Several hours after I felt better, I drove across the street to the pharmacy and got a BP monitor. I used to be able to take my own BP manually, but doubt I can do it now. 100/56 and my pulse was 69. The monitor showed an indicator light that my pulse was irregular, but I waited and retook it and my pulse was regular.

Waves, I found out I was B12 deficient in 2005. I used to give myself monthly injections, but haven't been able to for quite a while. My PCP at the time never investigated. Once I couldn't do the shots, I did my research and found that SL tabs are readily absorbed and bypass the GI tract in case there is an underlying absorption problem. Many, many people with MS are B12 and D3 deficient, like me.
Maybe I do have a GI issue, but I had a needless colonoscopy a year ago and absolutely will not have another one unless the CT shows evidence of inflammatory disease in the colon.
If my MD ordered a basic metabolic profile, liver panels aren't included in the testing. But if he ordered a complete metabolic profile, the liver testing is covered. I can't remember which he ordered, probably the complete. My MS MD ordered liver panels when I saw her in March.

Mari, I don't feel like this is acute like a stroke, gunshot wound, or heart attack. But this is serious. It's serious enough that I've lost over 20lbs in 4 months. Something is definitely wrong, but I'm afraid they won't figure it out. I don't have much faith in my PCP at all right now. He'll get the test results and will probably try to blow me off again. I'm sure the office got a copy of at least the wet read from the abdominal CT and chest Xray I had done Wednesday. My PCP's office reopens Tuesday, and I'll call after lunch to see if I can get some satisfaction. I'll probably be online for a while looking for other things to investigate.
Baclofen usually causes weight gain. I called my MS MD and she's never seen any case of weight loss. Nothing at the FDA. I looked through scholarly articles, and the only mention of weight loss was in obese individuals.
The med does have several major s/e, but blood work has turned up nothing.
But, no, nobody has called the drug co. I take a generic, but I know which one. Thanks, I just might call.

Bizi, I think PET scans can show active areas of the brain.

Wish me luck!

Thank you all!

[bizi]

I wish you much luck and think highly of you. I am sorry you are going thru this.
hang in there, I was thinking of a whole body scan for masses imagery if any are present.
just am worried for you.
bizi

[Mari]

Originally Posted by OhKay

I just don't feel well lately and have less energy.
I thought I was going to t
Mari, I don't feel like this is acute like a stroke, gunshot wound, or heart attack. But this is serious.

OhKay,

Yes. I understand "acute" because my long time friend was a nurse and she used that language. What ever happens does not have to be a gunshot wound to count as acute. It made sense when she said it. I think she meant something that is the opposite of chronic -- that means abrupt onset and in need of urgent attention. ( I apologize for cognition problems.)

If it were possible to arrange, I might want a different MD to look at the PCP's tests results for the last few blood draws and run them again even if they are normal.

Keep working. You will get some answers.
I send good thoughts and prayers.
Keep taking care of yourself. You are an amazing woman.

M

[Dmom3005]

OhKay

I would want a copy of the testing that has come back. So you can
look through it too. I know in one case how much good it did me.

So I wish you lots of luck with this.

Donna

[waves]

Dear Kay

i'm so sorry about all this...

first i should clarify i didn't suggest a colonoscopy, but rather, a gastroendoscopy - UPPER GI scope to check esophagus and stomach lining.

of course the place to start would still be a gastroenterologist. if they want to do a colonoscopy you can refuse. say it is a last resort for you. even for the upper GI one, see if sedation is possible.

i agree with calling the drug company.

i'm sorry about that awful episode of scrunching you had. that sounds so scary.

do the best you can, it sounds like you are on top of things as much as one can be. i'm wishing you well and sending lots of love and hugs

~ waves ~

[OhKay]

I'm so lethargic, getting very little (if anything) done. My mood is pretty flat.

My CMP, ultrasound of thyroid normal, abdominal CT normal, lithium level and the rest of the blood work were fine. Also EKG and chest Xray were fine.

I've still been having shortness of breath and heart palpitations. I can't take my own BP manually, so I got an auto. BP- systolic at or under 100, diastolic around 50. Pulse recently went from around 55 to high 80s. I called my PCP's office and got an appt. for the following day, but the RN pretty much brow beat me to go to ER. I went. I was waiting almost 3 hours- and they said I was next. Finally, I was told that they were intubating someone back there, and there were no beds. They told me I should be understanding because I was a nurse- I said because I was a nurse, I know that I would be sitting there for HOURS more. I walked out.
All this just confirmed my belief that one should not go to the ER unless missing a limb, having a stroke, or been shot, etc.

I saw my PCP and he basically wrung his hands and said he had no idea what was going on. He still wants me to reduce the antispasmotic, baclofen even though it's not known to cause weight loss in normal-sized people. He said it can cause heart palpitations and SOB (which I didn't have until big-time weight loss). Mdoc says SOB and palp not from anxiety.
I asked for a cardiac echo. He wanted an event recorder. The hospital gave me an appointment for the 21st!!!
I told the scheduling nurse if they couldn't do it before then, forget it. Actually said "F" it. She said she'd talk to the MD about it.

I'm giving up. Either this gets better, stays the same, or gets worse. I'm not chasing this anymore. I don't have the energy.

I hope everyone is doing alright (((((BIG HUGS))))) to all!
Kay

[bizi]

dear kay, I sure feel for you...wish there were some easily explained reason for your symptoms. Have you ever considered going to a naturopathic doctor?
How about hormone testing?
(((((HUGS))))))
I really feel for you.
keep posting we are listening.
bizi

[OhKay]

Bizi,
Naturalpathic docs are very expensive and I don't have faith in many of them.

Estrogen and progesterone testing would be pointless because I have a a birth control implant.

My PCP tried to get me an earlier appointment (for the echocardiogram and event recorder, but was only able to get an appt. 2 days earlier. So, I go Tuesday.

I'm so lethargic, and am slurring my words more often. I don't look good- the under eye cream isn't working and I have dark bags. SO constipated, but I ate 2/3 of a quart of ice cream Saturday night, and lost a pound. I fell on the stairs Friday and bruised my **** and was sore in various other areas. My husband has had to pick me up twice this week.

I guess I'm still hoping they'll figure it out, but I'm giving up after this.

[waves]

Dear Kay,

Oh dear. I don't know what to say. what "advice" to give... sheez. I am sending you hope and hugs... i feel at least i can do that.

I understand about not having the energy. And you have been incredible so far to do as much as you do. If i think of something I'll come back to you.

At this point we have to think outside the box.

I'm actually glad your doc is having you reduce the baclofen... it just seems like any *possible* explanation has to be put to the test, and that is the only way to test that. You can always increase it again if the sx do not improve or cease to get worse.

Your low BP is preoccupying seems like that could cause both the SOB (insufficient circulation/too little oxygen to tissues) and palpitations -- your heart trying to compensate for low BP and/or BP drops. I wonder if the BP drop could have been caused by the precipitous weight loss, or if the baclofen could have caused both.

I hope they do the echo and they should do an ekg with halter too. please accept the appointment, even if they don't give you an earlier date.

sending lots of love and healing vibes. i will be thinking about you Kay. you are a dear person.

~ waves ~

[mymorgy]

as waves says you are such a dear person. i am so sorry that you are going through this. I hope that your doctors find a solution to this faster than fast.
i hope you have enough energy to keep pushing them
bobby