Struggling to find answers.

Posted by erivas110818 @erivas110818, Sep 6 1:09pm

Hello I am an 18 year old female and I need answers. For background, i have juvenile myoclonic epilepsy, and i am on lamictal for medication. I have been struggling for a couple of years now with a variety of things that have progressivly gotten worse. I have seen a primary care physician, an ENT, and of course my neurologist. I have gotten all of the blood panels, a ct scan, ecg, eeg, and MRI but that was four years ago. I have also gotten a sitting standing test. All of these came back normal except for the eeg but nothing you would not expect with my diagnosis. So getting into my unexplained problems. I struggle with swallowing with has gotten worse over time and now its difficult to swallow even my saliva. There are certain foods i cannot eat because it does not go down my throat. I have a constant choking feeling in my throat as well. I am constantly dizzy and experience vertigo periodically. I also experience regular head pain, body pain, and just a feeling of pressure and heaviness in my head. I constantly feel very weak, have trouble standing for long, walking, and overall performing daily activities. These things have greatly affected my work, school, and social life. My doctors do not know what is going on and my regular testing comes back normal. Does anyone have advice?

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samcal9977zz | @samcal9977zz | Sep 7 1:21pm

very very sorry to hear that you are having problems so young. Mine also started young, at age 21. I am 63 now and have been through the ringer.

So, first thing. As you dig into the problems, do research and try different things...pretty much every one of us who has been on the difficult health journey has found some answers, some symptom reduction, some improvement.

So, there is always hope. There just may be a missing piece of the puzzle, and you dedicated research into the issues, will find that missing piece of the puzzle, or connect you with someone who can find it.

As far as difficulty swallowing goes...of course check into your hydration levels and make sure you are really and truly getting those 8 glasses of water a day and every day.

One concern might be that the symptoms are restricting your intake of food. And as a result, you are starting to miss nutrients. So this may be causing or aggravating some of the symptoms. Ask your doctor if he thinks you might want to start supplementing your diet with some liquid nutrition. There are products like Ensure. That has protein and some nutrients and is fine. But there are also much more advanced products with a wide range of nutrients...and at higher doses than just any old protein shake.

Any time you are in the middle of problematic illness, it becomes very very important to hit all the keys to health.

So, again, that would go to that optimal hydration - those 8 glasses of water and every day.

Sleep is extremely key to health. In poor health you really need those 8 hours of sleep and every single night.
Sleep is very very necessary to healing. Much of healing occurs during sleep.

Some kind of movement work is usually helpful. If you are sick, it can be easy to do far more exercise than you should. But you should ask your doctor if there are, say stretches and very light weights you should do, maybe some walking. I don't know. For some conditions, exercise makes things worse...but you should ask.

And sometimes, re exercises, just getting up off the couch and walking for a few minutes every hour, may be enough.

You might want to consider looking into physicians who also work with natural remedies. So, that would be Integrative Medicine MDs, Osteopaths, Holistic MDs.

Maybe they can some up with something that the regular doctors missed? It's possible.

Never hurts to check into possible environmental causes. Is there mold in the house? Radon? Is there some kind of chemical exposure from a factory. Do you work with toxic chemicals, substances?

And, of course, makes sense to go through all the general chronic illnesses and be cleared, one by one, for each.

MS? Lupus? Lyme? more...

Again, very very sorry about the problems.

Keep plugging along, you will find answers and progress.

slkanowitz | @slkanowitz | Sep 7 1:38pm

The most obvious thing to me for the swallowing issue and weakness, fatigue is to check for a goiter, enlarged thyroid gland usually accompanied by low thyroid hormone levels that make one very tired and weak. This is extremely common and requires physical exam, blood tests and sometimes ultrasound.
Autoimmune diseases like scleroderma and Hashimotos can also cause swallowing issues, If those are ruled out, a scope may be needed by a gastroenterologist. I hope you get some answers soon!

erivas110818 | @erivas110818 | Sep 7 1:52pm

In reply to @dlydailyhope "@erivas110818 Did you have EEG, angiography or myelography? You may want to get an ultrasound of..." + (show)

ive only had an eeg im looking into getting another mri

cmmichaela | @cmmichaela | Sep 8 8:32am

I'm so sorry for all you are going through! I have had many debilitating neurological, muscle, and joint problems over the past twelve years, even to the point of paralysis etc. I had seen many different specialists for and so many tests were normal... I had recently been diagnosed with Celiac Disease, which has been my key to understanding all of the strange things that have been happening to me. Celiac Disease, like Lyme, can cause just about anything to happen within the body, even severe myopathies, etc. It is first screened through a simple blood test and confirmed later with an endoscopy, just make sure that you continue eating gluten before you are tested and diagnosed, otherwise the tests will be inaccurate. There are obviously many things that can cause the symptoms you are experiencing, just hoping that you are tested for Celiac to at least rule it out. I hope you find answers and feel better very soon!!

covidstinks2023 | @covidstinks2023 | Sep 9 7:27am

erivias00818, Bless you. Praying for you.

This is just a thought. I had two family members with severe swallowing issues and it came from anxiety. One was hospitalized the other sought help from their primary doctor. This has been years ago and I still remember it. I had never heard of it before at that time. I think they both were given short term anti-anxiety meds.

Stress can do a lot of things to your body and everyone reacts differently to stress.

I pray for God to touch you Himself or use a doctor to give you help. I am sorry you are going through this.
Blessings & Prayers....