Various symptoms

[Zashia]

Age:  52
Gender:  Female
Status:  Divorced single
Background:  Dx with MS 2008, major attack 2012, Dx with progressive MS 2012
Primary Symptoms:  Imbalance, heavy legs, ping pain, urination issues, bowels having a mind of their own, physical fatigue, depression/mood for no apparent reason

Over the years my symptoms have morphed into a multiple of various conditions that are never a perm stay.  Time range from a few moments to days on end.  Then gone.  Then come back.  Then gone again.  Examples, legs feeling like ice to me on a hot day and warm to everyone's touch, or toes and fingers cramp and not wanting to release, concentration goes for long extended vacation to the beach; just to name a few.

Do you get various symptoms beyond primary ones?  And if you do, how do you know it is not MS related?  Now that I have MS it seems like my symptoms are always pointed to MS, causing me lots of tests and upset.  I have such a large healthcare team that I barely remember my name.  I realize that tests are important to make sure it is not caused by MS.

Some days I just want to curl up into a hole and just not exist to answer the phone no more.  I guess I want some feed back so I can stop worry about other issues besides MS.  MS can cause false possible Dx that lead to being poked and scanned unnecessarily.  And I am tired of it.

Is there any guideline from a patient point of view before running to the doctor?  Or having the medical team think you are just plain nuts or hypochondriac?  Some kind of measurement/ruler (Which I realize one-size does not fit all.)

I just refuse to believe I am alone in this frustration where MS is involved.

MS the Abyss of Unknown:  Research cannot even point an affirmative cause to this beast with no boundaries.  Lots of theories presented, but no cure insight until a defined cause is found, IMO.  I have yet to receive a survey about my history or habits.  The good news lots of options to sift through to help with symptoms; besides a brain removal.

Feedback and ideas welcomed.

[Zashia]

It is like the med team just does not communicate with each other; they know about each other as I chirp about it all the time (So and so said this and So and so said that.)  Yet there appears to be a disconnect in communication between them all.  I miss the days when you went to one doctor and BAM you were done.  Example your doctor prescribes three tests but each has to be a different day and time, in the good old days you got them all at one time most likely the same day the doctor appointment or the next day.  Now is would be three separate days which for me is hard because I have to arrange transportation to get to the appointments and one appointment takes up most of my day and only have so much energy to spare to my ADLs.

I guess it is better some how on their end.

Today is kind of nice.  There is a hint of fall chill this morning in the air despite the threat of 90 degrees this afternoon.  Grass has a bit of moisture to it this morning but still watered a little.

Hope your day goes well.

Michelle

[HVAC]

I use humor. I went to a doctor and we sat down with all my medications and looked at the interactions. It took about an hour I was on 22. Then when I was throwing up from Cancer I got off a lot of them I could not keep them down. The ones that were not really working I did not add back.  I take much fewer. For awhile doctors kept adding and never subtracting. They had me on 4 anti seizures at once now I am on none.

You have to be your own advocate. Especially when you get Cancer. My nurse cancels lab appointments when I have chemo and I have to get her to reschedule. They try to give me the chemo in the wrong order or forget antinausea medications. The pain clinic writes my scripts wrong. I have to check everything.

Alex

[Zashia]

Thank you for responding.

The big "C".  I totally feel for you.

It is my fear as I try to way through the multiple symptoms of MS that I have something that is not MS.  It is just scary and frustrating weeding through the terminology, reports and doctors.  Trying to figure out the realities and the drug reactions is a nightmare.  Everyone wants to put me on something.  It is to the point I am afraid to mention issues to the doctors.  I sometimes wish I had an admin assistant.

Try to maintain a humor as it can be your salvation through the trying treatments and tests.  Humor is my better choice than crying; it makes the DOCs feel better like they are conquering a new frontier.  Space odyssey here I come .  I just get down sometimes, more like hard on myself like I am suppose to know what they are talking about.

I hope all works out for you Alex.  Let me know how it goes; your up days and especially those challenging days.  I am here.

Michelle_My drunk snail walks faster than me.

[HVAC]

There are three things effecting MS inflammation, heat and nerve damage. When nerves are inflamed you have symptoms and when the inflammation dies down symptoms go away. This is steroids are used. When nerves get overheated you have symptoms when you cool down symptoms are gone. With nerve damage symptoms are permanent.

Many people with MS have a big health care team Urologist, Gastroentrologists, Pain Management, PTs , etc. Because MS effects so many things.

Not everything is MS. I was throwing up and having diaphragm spasms and for two years my GP decided it was MS. Unfortunately it was Cancer. By the time her partner found it it was stage 4 so you can't think everything is MS. Our healthcare system is so Specialized with each doctor only focusing on their specialty. That is why I run things by my GP first.

I have a GP, a Pain Specialist,a MS Specialist, a GYN Oncologist, a Hereditary Breast Specialist, Gastro, and a Heart Specialist. I go for Cancer treatment once a week and to all the others when I needed. I used to only go to a GP every once in awhile then I was diagnosed with PPMS in 2009 and Cancer in 2012. My GP used to think I over reacted until I was diagnosed with Cancer now she sees me right a way if I call.

Alex