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.
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.
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.
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!
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.
JJ: 1. Did you have chemo or other cancer related drugs when you had kidney cancer?
No, I was very lucky. It was found by accident after major complications of a miscarriage.
2. Did you have trouble conceiving? I've had two miscarriages and was found to have the gene mutation for MTHFR. After my reproductive endocronologist treated my PCOS and gave me folic acid supplements we spontaneously got pregnant with twins.
3. Do you easily sun burn or does sun burn last a long time or look more like a rash?
I sunburn easily but then I have very pale skin. I don't think it looks more like a rash though.
4. Why is something else being considered and your sx not being attributed to your already dx conditions?
Some of my symptoms can be but the weakness and rapid muscle fatigue (especially in the upper arm shoulder area), the twitching, the still general fatigue, the loss in fine motor skills can't all be attributed to my current dx.
They've looked at Lupus many times through the years. I can remember getting tested for it when I was in my early 20's but I can't remember why they were testing me for it. My blood tests for ANA and those always come back normal and they seem to stop considering it at that point.
Lulu, thank you. When I first started looking up MS symptoms I didn't think it sounded like me either, but then my OT mentioned it, and then my MIL so I thought I'd look into it a bit further. The symptoms seem so broad and varied. I will have to put it on the other groups then.
I wish I knew how to condense it down better. Any idea how to get all of my symptoms across to my doctor without him having to read a book since he obviously won't read the shorter statements that are already in my file? It's so hard to fully put it all into words or even to remember all of the little things when you are trying to.
JJ, I took another look at Lupus and based on this list I don't know that it sounds like me.
YES - Muscle & Joint Pain
95% of people with lupus experience muscle and joint pain.
NO- Fever Greater Than 100° F (MY TEMP RUNS LOW - 97 USUALLY, EVEN WHEN I HAD FLU AND PNEUMONIA).
90% of people with lupus get a fever of more than 100 degrees Fahrenheit (38 degrees Celsius).
YES - Prolonged or Extreme Fatigue (BUT I WOULDN'T CONSIDER IT A PRIMARY SYMPTOM)
81% of people with lupus suffer from prolonged or extreme fatigue.
NO - Anemia (WHEN I WAS YOUNGER BUT IRON LEVELS HAVE BEEN FINE FOR YEARS - I DO TAKE VITAMINS)
71% of people with lupus simultaneously suffer from anemia.
YES AND NO - Kidney Problems (I HAD KIDNEY CANCER AND THEY REMOVED PART OF ONE BUT MY KIDNEY FUNCTION TESTS HAVE ALL BEEN GREAT SINCE. HBP, BUT ITS WELL CONTROLLED NOW, MOSTLY BY DIET) 50% of people with lupus find that their kidneys are affected. Symptoms include weight gain, swollen ankles, high blood pressure, and decreased kidney function.
YES AND NO - Pain in the Chest (MOSTLY UNDER MY LEFT BREAST OR IN THE PEC AREA ON THE RIGHT SIDE - INTERMITTENT. I MIGHT GET IT FOR A DAY OR TWO AND THEN ITS GONE AGAIN. CARDIO CHECKS OUT SO MUSCULAR OR DIAPHRAGM IS SUSPECTED)
45% of people with lupus experience a pain in their chest upon breathing deeply. This condition is called pleurisy.
NO - Rashes
80% of people with lupus observe rashes on their skin. A butterfly-shaped rash across the cheeks and nose is especially common (42%).
NO - Light Sensitivity (NOT EVEN WITH MIGRAINES)
30% of people with lupus become sensitive to light, a condition called photosensitivity.
NO - Hair Loss
27% of people with lupus experience hair loss resulting in patchy or bald spots.
YES AND NO - Abnormal Blood Clotting (DOES BRUISING FALL UNDER THIS? I BRUISE VERY EASILY AND EVEN GOT A HEMATOMA ON MY FOREARM IN THE FORM OF A HUGE PAINFUL KNOT UNDER THE SKIN THAT YOU CAN'T SEE AFTER MY LATEST EMG ON MONDAY)
20% of people with lupus report abnormal blood clotting problems.
MAYBE - Eye Disease - CAN'T WEAR CONTACTS BECAUSE OF DRY EYES AND MY EYES ARE EASILY IRRITATED BUT OTHER THAN THAT NOT MUCH OF A PROBLEM.)
20% of people with lupus concurrently suffer from eye complications such as dry eyes, eye inflammation, and eyelid rashes.
NO - Seizures - (THOUGH I DO HAVE A VAGAL RESPONSE THAT APPEARS AS A SEIZURE. IT'S RARE AND WAS MOSTLY WHILE I WAS PREGNANT.)
15% of people with lupus experience seizures.
NO, MAYBE - Mouth or Nose Ulcers (I GET THRUSH AFTER ANY/ALL SURGERIES BUT ESPECIALLY IF I'M INTUBATED. THEY DON'T KNOW WHY BUT EVER TASTE BUD FALLS OFF. IT'S SERIOUSLY GROSS)
12% of people with lupus report ulcers on their nose or mouth.
Hi, a while ago, lol long before MS got a look in, Lupus was high on the list of possibilities, ANA normal, no butterfly rash, RA normal etc and then 09 happened and it no longer looked like Lupus but more like MS. I've had this site in my favorites ever since because its very detailed but easy to navigate and read. http://www.lupus.org Note below is the criteria list for dx, you need at least 4 of the 11 (past or presant) and 95% will have poss ANA. The site does provide other conditions to look into because Lupus is known as the greatest mimic, so its worth looking at, imo :-)
Common Symptoms of Lupus
To help the doctors diagnose lupus, a list of 11 common criteria, or measures, was developed by the American College of Rheumatology (ACR). ACR is a professional association of rheumatologists. These are the doctors who specialize in treating diseases of the joints and muscles, like lupus. If you have at least four of the criteria on the list, either at the present time or at some time in the past, there is a strong chance that you have lupus.
1. Malar rash – a rash over the cheeks and nose, often in the shape of a butterfly
2. Discoid rash – a rash that appears as red, raised, disk-shaped patches
3. Photosensitivity – a reaction to sun or light that causes a skin rash to appear or get worse
4.Oral ulcers – sores appearing in the mouth
5.Arthritis – joint pain and swelling of two or more joints in which the bones around the joints do not become destroyed
6.Serositis – inflammation of the lining around the lungs (pleuritis) or inflammation of the lining around the heart that causes chest pain which is worse with deep breathing (pericarditis)
7.Kidney disorder – persistent protein or cellular casts in the urine
8.Neurological disorder – seizures or psychosis
9.Blood disorder – anemia (low red blood cell count), leukopenia (low white blood cell count), lymphopenia (low level of specific white blood cells), or thrombocytopenia (low platelet count)
10.Immunologic disorder – abnormal anti-double-stranded DNA or anti-Sm, positive antiphospholipid antibodies
11.Abnormal antinuclear antibody (ANA)
People with lupus also may experience symptoms that do not appear among the ACR criteria:
fever (over 100° F)
fingers turning white and/or blue when cold (Raynaud’s phenomenon)"
In the commonly asked questions section, it indicates a person can have a few Lupus signs and normal ANA which isn't enough for dx, then years later they've added a few more Lupus signs and their ANA has become possitive (lol from my basic understanding) and then they get dx.
Anyhoooooo, it might be worth having a look through it, if its a loopey idea then at least you'll be sure lol well thats my rational :-)
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