kag52 30/12/14
Last reply 3 years ago
My symptoms.

I have not been diagnosed with MS but I’m being tested at the moment. I need help desperately. My entire life revolves around my sickness. I’ve had lab work and two MRIs. Everything has come back normal. No lesions on my MRIs. Labs have ruled out RA, lupus, and thyroid disorders. Also other autoimmune issues. Nothing has been found. My neurologist has not helped me at all. I’ve been prescribed amitriptyline for my pain and I’m so afraid to take it because I’m very sensitive to medicine. Which is why I thought I was having all this. Maybe side effects of Adderall or the birth control pill. I’m 29 years old and I have no kids, I’ve never been pregnant. I work full-time as a medical assistant (desk job though) and I’m not a drinker or smoker. I was diagnosed with carpal tunnel syndrome and cervical radiculopathy but that’s been ruled out as well. My nerve conduction study was normal. Also diagnosed with shoulder tendinitis but the steroid injection severely exacerbated my psoriasis but that’s a whole different story.

Since 2012, I’ve added 45 pounds to my once 115 pound 5’2″ frame. I assumed birth control was the culprit. Up until May 2014, I had the nexplanon implant. It worked great but I had the weight gain and the extreme fatigue. After I had it removed, nothing changed. I first started noticing an extremely sharp electric shock pain down my left leg and in my abdomen and pelvis. I had a CT scan and it revealed an ovarian cyst. My primary doctor diagnosed me with bursitis. I started naproxen. The pain never stopped. In July, I was studying for the CMA certification exam. My job is very demanding and adding studying for this big exam everyday made my life miserable. I couldn’t write a few sentences without my hand getting weak. My arms, hands, and shoulders developed an extremely sharp electric shock pain from the fingertips to the shoulder blades. It would also be dull and achy. This pain was horrendous and 24/7. My legs started getting tingly when I was sitting or standing for more than 5 minutes. It was so uncomfortable. I started mobic and was taking up to 30mg a day. It didn’t help. My left armpit was also very sore. It felt like I had a lump. The ultrasound revealed nothing. I was diagnosed with extra breast tissue and hyperdensity of my breasts. The pain continued. My right side was always weak. The electric shock pain was everywhere and the dull achy pain continued. I wake up exhausted and stiff. My joints are killing me. But I have no swelling or inflammation. Since November, my left eye has twitched nonstop. Oh and back in July, I noticed constant muscle spasms and twitching. Literally every 5 minutes. It hurts sometimes as well. My lips twitch and cramp everyday. I have left sided face pain and my face will have the electric shock pain from my scalp to my chin. This is now constant as well. The headaches are like clockwork but it’s not like an internal headache. It feels like it’s on my skin. I get the shock in my face and then the twitching starts. I’m afraid I’ll have a stroke. My sides are always cramping. My back has an extremely sharp pain right in the middle. I’ve noticed that some spots on body will feel extremely cold or burning but not to the touch but I feel it internally. This happens a few times a day but lasts for hours. Especially in my arms and thighs. I’m itching everywhere nonstop. All of this has not let up for one day. No rashes or welts. In October I was diagnosed with a pulled muscle and an acid reflux attack after going to the ER for chest and shoulder pains. But I’m sure I didn’t have any reflux. The chest and shoulder pains continue but it’s like a constant cramping. Very scary because I’ve had two heart attack deaths in my family since 2012. Every search I’ve done comes up with MS. I don’t know what to do next. Please help me with any advice. I need some answers. I want to beg my doctor for a spinal tap. I don’t know if he’ll agree because I already feel like he
he’s not listening to anything. With the constant pain and muscle spasms, parathesia, and eye twitching, it’s driving me crazy. I’ve taken a leave from work because my memory has been very foggy. I’m forgetful. (when I stopped Adderall it was because I was starting to forget to take it too) I can’t sleep due to hurting. I’m falling asleep at 4am every night. Sitting down for 30 minutes is impossible. The soreness is exhausting. Any advice would be great. I need some answers soon. If this seems all over the place please forgive me. Keeping track of everything is such a task. I’m doing my best to remember it all. Thanks.

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stumbler
3 years ago

Hi @kag52 and welcome.

Regrettably, we’re not medical experts on this forum, but I understand your need/desire for answers. Multiple Sclerosis, as you now appreciate, is a difficult condition to diagnose.The symptoms can overlap with many other conditions for a simple vitamin deficiency upwards.

It just goes to show how complicated our bodies are and the problems that we present to the medical profession.

You are presently on the not unusual extended journey through “limboland”, where possible conditions are considered, and discounted. Our Doctors and Neuros can only interpret their test results and make clinical judgements – if only they were the magicians that we wished them to be.

Having read your account, I would be concerned that you have a demanding job, to which you added the pressure of studying for professional exams. That suggests to me a cauldron of stress and pressure, which can be a lot for our Central Processing Unit (CPU), our brain, to handle. Given these circumstances, our brain can release chemicals, which can interfere with our Central Nervous System (CNS).

You may need to step back and have a long hard look at this situation, to try and alleviate the stress.

Lack of quality sleep only adds to this pressure cooker situation.

The Amitriptyline is a good call by the Neuro. It’s a drug that can dull down any neurological pain. And it can make you drowsy. Always take Amitriptyline in the late afternoon/early evening, approximately 12 hours before you intend to rise the next day.

This may help your sleep situation.

I’m sorry that I can’t add anything specific to your situation. Although it may be useful to review your post above and just extract a short, concise, chronological list of your symptoms, that you can provide to any Doctors/Neuros. This may provide some additional pieces to the complex jigsaw puzzle which is you.


the-pond
3 years ago

Wow Kag, that’s a heck of a lot of stuff you’re going through! No wonder you’re struggling. And the lack of answers will only be making things worse – something us humans hate is uncertainty and the unknown, and you’re right in the middle of a whole load of uncertainty and unknowns. And as Stumbler says, the pressure of your job & studying will no doubt add to your worries & anxieties. Something like mindfulness meditation will help with your emotions & stress. It’s also good for pain management. If you’re able to get some form of counselling or Cognitive Behavioural Therapy (CBT), that may help as well. You need all the support you can get.

The Amitriptyline should lessen much of the pain you feel. But if it doesn’t , then there are other medications available that can help like Pregabalin or Gabapentin. That’s a good idea to list your symptoms. Write down your main questions too. Then try & get an appointment with your neurologist as soon as you can, to share what you’ve written.

Sorry I can’t help more. But I hope & pray that you start to get some answers & help soon.

Dan


cameron
3 years ago

So sorry to read your post.The only positive suggestion I can offer is to start keeping a symptom diary. I don’t mean a prose account – can you divide or classify your symptoms into (for example) pain, abnormal sensations, cramps, cognition and give each a level every day – perhaps a 1-5 scale. If you do this in a tabular form, you might begin to see patterns – e.g. things might be slightly better after weekends, or a particular symptom might be lessening for no apparent reason. I speak from a little experience – have never had as many symptoms as you have, but I needed to communicate everything properly to my new neuro. Also an MS nurse had suggested I should keep track of symptoms to help me decide how much my body was recovering from a relapse so I took her advice. It really was therapeutic to make myself classify exactly what was going on. I had various attempts at a system and eventually came up with a simple scoring one, which I then put on a spreadsheet at the end of every week. It also de-stressed me – the fact of getting it down on paper knowing that sometime it would be read by somebody medical took away a lot of the panic I was feeling. I gave it to the neuro who didn’t comment, but he kept the piece of paper. I then carried it on (once the relapse was definitely over) in a reduced form as a daily diary entry. I did this for around six years, and then realised that I didn’t need to write things down because I knew my own body enough and was no longer in a permanent state of panic. Big hugs xx Kay


chockpea
3 years ago

Hello there – if that were me I would be trying to find out as much as possible to what caused the heart attacks in your family. Maybe there is a blood or vascular issue that presses on nerves. Just a thought x

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