MS... The 'catch-all' disease

[Peddler]

So for many years I've had swollen feet (the left especially) a pain and tender spot in my left abdomen and occasional severe back pain. Over the years my neuro's and regular MD's just fluffed off my problem as being MS (which I DO indeed have)
Well, about a month ago I ended up in an ambulance with profuse sweating and a HUGE amount of pain in my gut and back. I went right into the operating room and spent 5 days in ICU recovering from the almost 10 CM abdominal aorta aneurysm they ended up fixing just as it started leaking!
I was about as close to knocking on Heavens door as one can get.
The sad thing is this was bothering me so much that I went to my regular MD to look into it. Same thing... "It's the MS"
I actually asked the doctor at the time to pretend he didn't know I had MS and to look into this with new eyes. He blew me off.
This is just a warning to all to let you know not all of our ills have to be MS related. There are many other systems in our bodies and to be forewarned that problems other than MS may occur even to us MS victims.

[jazzgirl]

That's an EXCELLENT point, Peddler! I'm glad that they were able to get to you in the knick of time, because your aortic aneurysm was, indeed, life-threatening.

Know your own body, and insist on getting the care you need when you KNOW something is wrong. It could save your life...and you're a case in point!

[Lucia]

This is just a warning to all to let you know not all of our ills have to be MS related. There are many other systems in our bodies and to be forewarned that problems other than MS may occur even to us MS victims.

You don't say.....sorry for the sarcasm but I've discovered this little bit of news years ago. I've also said the same thing in past threads.

I've seen docs practically put their stethoscope back around their necks after I mentioned that I have MS.

It's too convenient for them to blame the disease. Once I had a bad rash on my arm. The doc blamed it on MS and/or the drugs I was taking. He was about to treat the sxs with a heavy dose of steroids and send me on my way.

I practically had to plead with him to find the cause because my gut reaction said no to this hasty dx.

He reluctantly did some tests and lo and behold I was allergic to cayenne pepper I was recently using in some dishes.

Don't get me wrong here. I'm glad you're okay and want to warn others but I'm sure some of us have found this out the hard way.

[JoanFrances]

Hello Peddler

Thank God they fixed you up, and thanks for the reminder that we should be listening to our bodies. How are you doing now? Hope all is as well as it can be.

Isn't it something that early on the doctors go out of their way to prove we don't have MS, but once the dx comes along, they are so willing to blame everything on it. Can't win at times.

No wonder we tend to do the same thing.

[mjan]

Wow..so sorry you went through all that..good thing you are doing ok. How are you now?

My biggest complaint, regarding well meaning docs, is for them to NOT to make up something unless they know for sure. In case its NOT an MS symptom this could be so dangerous and often a run around.

Take good care and glad you are ok.

Jan

[lahgarden]

u r very lucky!

how frightening! I'm glad that you got the proper treatment.

my favorite person in the world had a massive coronary and died, and all of the warning signs were chalked up to the impossible debilitating RA he suffered from. Everything was blamed on side effects of the IV meds he took.

Never once did any one look at him with out looking through glasses that had RA stamped across them.

shame.

I'm glad you're okay! Feel better fast!

take care
lah

[JoanFrances]

you know this thread brings back memories of what a dear friend of mine went through trying to figure out what was happening to her.

The poor thing went from doctor to doctor trying to get someone to help her without any relief

She was told it was all in her head and so on. Well sadly she had a stroke that left her unable to walk or take care of herself let alone her children. Her youngest was 2 at the time. It turned out she had a congenital malformation of her heart.

She struggled to regain her ability to walk and care for her children only to have a second stroke on Christmas Eve the following year. The second stroke left her paralyzed from the mouth down. She wasn't able to move or speak. She lived like that for years. She still had her mind which was sad because she knew everything that was happening to her the whole time. She had to have a feeding tube and finally lost her fight to live weighing only 48 lbs.

When this all happened I said that I didn't care what I had to do, I was gonna make sure someone listened to me if my body was telling me something was wrong with me.

[DianeD]

How frustating

What a jerk the doc was that ignored your request to think of your treatment plan minus the MS dx.

At the very least he could have said why....

I know they have to look at the big picture, but an aortic anuerism is not anything to do with MS.

It's difficult to be treated minus your MS dx ...for anything.

In my experiene if it's the flu or any other virus they always say 'well, you do have ms you know'.... (YOU DON'T SAY!). I get frustrated also.

Diane

[Jules A]

I agree its not alway MS and try to remember that when I'm diagnosing myself.

There is a decent chance that one day I'll be having a heart attack or something equally as serious and just take to bed convinced that it was the MS.

[Jennyfoo]

Joan, that story is just so sad. Peddler, I'm sosorry for your ordeal. It's just awful that the drs wouldn't listen and take you seriously.

I have my own nightmare story of medical issues being blamed on my then-undiagnosed autoimmune disease. I had been referred to a rheumatologist and was undergoing testing to find a dx at the time to figure out what kind of inflammatory arthritis I had. I started having swelling in my legs and feet and severe sciatic pain. I went to my dr twice and the ER once and my dr kept blaming it on the arthritis. I knew something else was up. Then, I ended up in the ER by ambulance, unable to walk, in extreme pain. ER dr wanted to admit me to the hospital to find out what was causing the pain. My dr said I didn't fit admittance criteria since my pain was controlled at that time. I was sent home, drugged up, ordered to stay in bed, and waited to hear from my dr office about the MRI they were supposed to order, but didn't(I found out after I'd not heard from them for 4 days). I ended up in the ER again, with what I now know was cauda equina syndrome. I finally had an MRI after that and they found I had ruptured my L5-S1 disc and it was impinging nerve roots. I now know that I should have been admitted for emergency surgery, but the neurosurgeon I was referred to, booked me 2 weeks out. Those 3 weeks of that ordeal was the most horrific thing I've ever been through. I was in such extreme pain that i could not sleep, and passed out from the pain eventually. I ended up in the ER again twice, just to get my pain under control. I couldn't walk: was confined to bed and my husband had to help me to the bathroom. It was a nightmare.

I finally had surgery and the results were amazing(pain-wise), but my nerve had been entrapped too long and I lost all feeling down my butt, back of leg, bottom of my foot. I had severe nerve Pain for over a year until it died down.

So i've kinda been there. I had an emergency situation, a severe injury that could have cost me leg or mobility thatcwas overlookeed and instead blamed on my autoimmune arthritis diseae. It's a shame that once you have a diagnosis, drs are so quick to pin everything on it instead of investigating and finding out what's really going on.

[DianeD]

Big Doctor issues

I see several specialists. Once upon a time I thought docs actually communicated with each other.

Every time I see a doctor I fill out a ton of paperwork. What a drag! Most of my docs are the same 'group' and have computer access to each other. Either the doctor or his nurse brings in their computer and spends part of our time 'talking' to it.

Still, they don't seem to know what you've been treated for, etc.

I get very tired of filling out lenthy forms only to find they want it done again even though the sensible thing is to just do a print out and ask the patient to add anything new!!

Otherwise what's the point of high tech?

Diane

[JoanFrances]

I see several specialists. Once upon a time I thought docs actually communicated with each other.

Every time I see a doctor I fill out a ton of paperwork. What a drag! Most of my docs are the same 'group' and have computer access to each other. Either the doctor or his nurse brings in their computer and spends part of our time 'talking' to it.

Still, they don't seem to know what you've been treated for, etc.

I get very tired of filling out lenthy forms only to find they want it done again even though the sensible thing is to just do a print out and ask the patient to add anything new!!

Otherwise what's the point of high tech?

Diane

Oh Diane, you are so right. But you know the old saying the tech is only as good as the person using it. What I love is when you get a new referral and you get there and they act like they have no idea why you are there LOL

[froggirl88]

isn't it funny

What I find "amusing" is that it takes a doctor "forever" to diagnose that you have MS, however once you get your lable, anything else that goes wrong with you is now related to MS. I have had similar things happen and they were not related to MS. It's sad to think that we should be getting extra care and be watched more closely, but instead we are just labled and basically ignored-once again. The cycle starts over for us once again.

[Splendid]

I agree and have actually been concerned at times when I read posts about "MS symptoms" that sound exactly like a stroke...and I want to call the person and say go to the ER! I think after years of being told that it is MS it would be easy to assume it is all MS.