Multiple Sclerosis Community
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Avatar universal

Frustrated... Depression as a new symptom

My mother in law just called to tell me that a customer of hers has MS and how my symptoms are just how hers started.  I love how everybody but the doctors has an idea of what is going on.

Depression has never been largely one of my problems.  I think I can now officially add it to the long list of other symptoms that nobody seems able to diagnose.  So I guess I'm here looking for some direction and support.

I'm almost 32 years old and I've had varying symptoms for awhile.  Mostly things I didn't think were related to each other but the more I'm learning about neuro type disorders I'm learning just how connected the most different of symptoms could be.  I started out with an orthopedic doctor for my issues with my muscles and with pain.  My diagnoses include: Femoral neuropathy in right leg and quadricep atrophy, bilateral carpal tunnel, cubital tunnel, right shoulder impingement, and multiple locations of tendonitis including bicipital.  I've had IBS for years that was suspected to be Crohn's (and had a positive Serology 7 blood test indicating Crohn's but colonoscopys have shown no direct evidence).  I have controlled hypo-thyroidism, and I take supplements for Vitamin D deficiency, and magnesium to help with migraines, tension, and muscle pain.

In 2006 I started having consistent and localized pain during intercourse (Dyspareunia) and had it on and off (mostly on) for years until it spontaneously resolved sometime after my children were born (c-section).  I saw several specialists for it but it became less of priority for treatment over the years with other health issues).

In 2007 I had kidney cancer and a partial nephrectomy.

Sometime around then, before, or after, I'm not really sure I started having occasional issues when swallowing.  The food would get stuck in my throat.  I'm not choking, and can breathe fine but it’s really painful.  It's like my esophagus doesn't push the food down.  It stays stuck there and my mouth fills with saliva causing me to usually have to run to a sink or (embarrassing when we're out) grab a napkin and try to discreetly spit it out.  It usually goes down after a minute or two but it really hurts.  (Yes, I chew my food well and this has happened with liquid though it obviously gets through much faster and only has a moment of pain).  This has been happening more frequently lately with a greater amount of saliva.  I also seem to have gotten clumsy with a cup.  When I drink I often spill at my mouth on the right side.  A little like my two year olds that are still learning to drink from a cup.
In 2010 I was diagnosed with asthma after chronic shortness of breath but I'm not sure that is accurate because none of the inhalers they've give me have offered any relief when the SOB starts.  Around this time I would take frequent walks with my twins in the stroller.  I enjoyed the walks though they would cause mild swelling in my arthritic knee.  Last summer I had to stop them because as the weather got hot I couldn’t stand the heat.  I would feel so nauseas and exhausted that there were days I wasn’t sure I could make it the last block home so I slowly stopped taking the walks altogether.  I used to take warm baths and scalding hot showers to help with sore muscles, etc but I can’t take baths at all anymore since I get the same nauseated sick feeling.  My comfortable shower water now doesn’t even steam up the mirrors and when I do turn it up for tense muscles I get sick and short of breath.  Strangely enough, outside of those circumstances I’m usually feeling very cold and wear a sweater in the house often.  I also sleep with a warming blanket on my bed, though if I leave the temperature too high and it gets warm at night I will sometimes wake up feeling sick.

In 2010 - 2011, I started having extreme episodes of fatigue in the middle of the day.  Sometimes when it seemed I'd only been up for the day for a few hours and had slept fine the night before.  I went to an internist who ran a plethora of blood work, and then referred me to a cardiologist for tachycardia, elevated blood pressure, and mild chest pain, but couldn't find anything other than low Vitamin D.  Cardio work up checked out fine, I was put on blood pressure meds that have since been lowered since I changed our family's diet and my blood pressure has done quite well since.  Chest pain is thought to be muscular in nature.  (This change in diet and switch over to raw milk also has my IBS under control).

I was sent back to my pulmonologist for a sleep study when nothing else was explaining the fatigue.  I was found to have mild sleep apnea and given a cpap machine.  It seems to have helped but not resolved the fatigue.  During all of this I began having increased pain in my hands, rapid fatigue in my shoulders and arms, and weakness.  I began to need help getting in and out of the shower, clasping my bra, and because of decreasing strength, motor skills, and pain, my husband cuts my food for me, transfers milk into half gallon containers so I can better pick it up, and opens all bottles for me before lightly closing them back so I can use them while he's at work.  Taking care of my kids has become quite difficult and because I can’t take them anywhere by myself safely they stay indoors and watch t.v. far too much!  I receive home health with physical therapy 3x a week and occupational therapy 2x a week to help with strength.  

During this time I also began getting muscle twitches.  The largest and ones that last the longest are in my legs, calves, thumb, and shoulder.  Those are quite visible and annoying.  Then I have smaller ones that feel like a line of bubbles running under my skin.  They don't last long enough for me to see if I can see them .  Those have happened everywhere from my foot, my chest, and my groin even.  

I’ve always been a semi organized person, but always methodical, and driven when I have a task.  I no longer handle the bills because I wasn’t focusing enough and getting them paid.  Most of the time I can remember what I had for lunch yesterday but I have to really think about it.  I walk into rooms and forget what I was doing.  Just yesterday my son asked for grapes and I was searching all over the refrigerator, telling him I was sorry, but I think we’re out, only to have my friend hold a bag of grapes up from the counter saying, “These grapes?”.  She’d watched me pull them of the refrigerator before I got down a bowl, only to get the bowl and go back to the refrigerator to get the grapes.  Ugh, little things like that make me feel like I’m going crazy.

I've had MRI's of the thoracic, lumbar, and cervical spine - nothing of significance.   I've had a lot of blood work done where they were looking for things such as myasthenia gravis, lupus, etc, and even checking for reflexes (or lack of) that could indicate als.  My C Reactive Protein HS was elevated but they don’t know what it means.

My neurologist recently referred me to a nerve and muscle specialist after he'd exhausted his resources and performed multiple EMG (showing nothing but carpal and cubital tunnel syndrome, and the femoral neuropathy) but still found my symptoms concerning.  

Continued in comment:

9 Responses
Avatar universal
I saw the new Dr. two weeks ago and my latest EMG with him yesterday.  He wouldn't tell me any results though and told me I had to come back after he analyzed them so I go back again on Friday.  I've never had that happen before as the neuros have always just told me what they were finding as they performed the test.  This one was a bit different though (or as he explained it, he does less sticks but studies the muscles longer, his NCS was different also, much shorter, lighter shocks vs the extremely uncomfortable stronger ones.
It was obvious that he hadn't reviewed any of my file since he seems surprised when I talk about a symptom that I filled out in his paperwork (like the twitching, which he said he wants to see my videos of; or the difficulty swallowing, which he didn't even ask any questions about.)   I get numbness and tingling especially in the upper extremities that I've always associated with the carpal/cubital tunnel but my feet get the tingling and fall asleep very easily if I am sitting down.  Yesterday during the EMG I pointed it out when my right foot had tingling in the arch of my foot while lying on the table.

Maybe it’s just his personality but I feel like he doesn't really take me seriously or listen to me.  I can't play with my kids and just getting through each day is hard.  One of my twins is autistic and his schedule is crazier than mine with the Dr.'s and therapists.  I have difficulty turning the steering wheel now so they've gotten me a steering knob adapter.  I have an e-stim for pain because I try to avoid pain medications when I can.  OTC doesn't work very well, and I can't take a lot of medications since I had my kidney taken out with cancer. My husband has to do everything, and while he's good and doesn't complain much I know it’s taking its toll on him.  

Other little things that I don't know if they are related or not... dizzy sometimes (rarely but noticeably), usually when I lie down, but sometimes when standing up.  Shooting pains, headaches, random aches and pains, fatigue, heavy feeling in my limbs (usually my right arm which is the weakest and gets the most fatigued (is also my dominant).  

When we suspected that something was wrong with one of my twins I bent over backwards to find out what.  I'm not one of those people that "waits and sees" or goes into denial.  I have to fix things and just the not knowing and therefore not having a treatment plan is making me nuts.  That has to be the WORST part of it all.  I can handle whatever it is.  I have a wonderful husband, and I have Jesus.  I just need to know what it is before all of these Dr.'s make me nuts.

Sorry for the book!
721523 tn?1331585402
You mentioned spinal MRI's, have you had an MRI of the brain?

I am so sorry for all that you are going through.  i have 3 little ones, and can feel some of your pain!  Keep us posted!

Best wishes for an accurate Dx!
Avatar universal
I have not had one of the brain recently, though they did one of the brain 2 years ago without contrast because of headaches and a feathering found by my eye doctor on my optic nerve.  Neuro I was sent to for that said that the spot on my optic nerve was just pigment, like a birthmark, and the MRI was fine.

Sorry for the book and thank you for responding.  I'm not really sure what to do and I feel like my orthos and my original neuros were helpful and caring, they've referred me on to higher specialists and I don't feel so good about this one.
Avatar universal
Do my symptoms even sound like something that could be MS?
987762 tn?1331031553
I've got a few questions running through my head, which make a bit of difference to what i'm thinking:

1. Did you have chemo or other cancer related drugs when you had kidney cancer?

2. Did you have trouble conceiving?

3. Do you easily sun burn or does sun burn last a long time or look more like a rash?

4. Why is something else being considered and your sx not being attributed to your already dx conditions?

Sorry for the questions but there is so much thats gone on with you, a lot explainable but if i'm honest i'm really thinking Lupus because if you keep everything inter related to one condition, Lupus is flashing like a neon sign. Unfortunately its another one thats really tricky to dx if they are only looking at blood test results but it can be dx by the combined sx and you do have quite a few on the list. I'd recommend having a chat in the Lupus forum and getting their opinions too ;0)


PS fellow parent with 2 ASD kids so i'm sending extra hugs for you!

572651 tn?1531002957
You have done a great job explaining your symptoms and situations and I'm not feeling MS in it all, but that doesn't mean much because I am no medical expert.  I would copy what you have written here and post it on several different forums and get the collective brains thinking through your health problems.

There is a lupus forum and a thyroid forum.  You might also put it up on the neurology group again and get their response.

I am so sorry you have gone through all of these problems and  I hope you get some relief soon.
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