Struggling to get a diagnosis

many of your symptoms are parallel to mine and I have MS (multiple sclerosis). I have issues with heat and cold, numbness in some cases and then overactive nerves which drive extreme pain that eventually disable me. It took them years to diagnose me as nothing showed on the countless MRIs they did among other tests. I too had been told stress and depression was to blame and they can cause many of those symptoms but I was persistent and discovered the underlying cause.

The part of the brain that controls the optic nerve was where the first lesion was found for me. I lost my vision temporarily 2 years ago which grew the wondering of the issue at hand. I am sorry for your pain and the battles you face with this. It's not easy.

Based on your symptoms, I was thinking MS; glad to see that is being looked into. In regard to your fatigue, you may want to inquire about your thyroid. Often times, a person's TSH comes back "normal" but normal is based on what reference range the lab uses. I've treated many patients for subclinical hypothyroidism when their TSH values were considered normal by most labs. For example, most labs say a TSH of >5 is hypothyroid and some say 4; however, some physicians, like endocrinologists, don't believe a TSH level should go above 2.5. You may want to see a functional medicine provider; they really offer a holistic and patient-centered approach.

Glad to hear you went back in and had a heart-to-heart talk with your physician. Physical therapy sounds like a great plan. Hopefully, you will get a diagnosis soon so you can be appropriately treated. Sending healing thoughts your way.

JAM2b said:

I've never been checked for allergies.

My symptoms are so broad I never thought they were connected before but because it is all worse, I believe that is now.

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I truly hope your ailment is not my own, but the symptoms are the same. I never did get a diagnosis, except generic fibromyalgia and inflammatory arthritis...

I am still very highly suspicious that I contracted Lyme disease, which is very hard to diagnose positively... And politics in the health community here deny any possibility of Lyme, even though I twice had the hallmark 'bullseye' bite marks. The longer it is in your system, I guess the harder it is to detect.

Don't mean to scare you, but I wound up in a wheelchair for seven years, in screaming awful pain (that muscle and joint thing you described)

I too had extreme vitamin D deficiency, along with calcium and magnesium deficiencies - Careful, as all three need to be in balance, or you cannot metabolize any. The magnesium should help with muscle pain and anxiety - I used 'Natural Calm' from a health food store - Pills did me no good (ever), so I needed highly soluble (natural) solutions anywhere possible.

You might try getting off of city water - Chlorine allergy was a big part of it for me (though ancillary) - Who would think that one could be allergic to water? That fix began by using ceramic filtering for all my drinking and cooking water - Where I am now has an artesian spring, sweet surface water, free of any chemical additives.

Another possible angle is mold... My story ended in divorce, and moving to a mold free house seems to have helped immensely.

But that main healing came from YHWH - I was reading in Psalms one day, and it jumped out at me that David loved to anoint himself with hyssop and go before the Lord - I always thought 'anointing' was something done to you, not something you could administer yourself.

So I obtained Oreganol oregano oil (basically the same thing as hyssop), anointed myself, horns, head, wrists, and feet, and knelt down to pray... I prayed deeply for an hour or two, crawled into bed, and spent an awful night shivering uncontrollably...

I got up the next day, walked into the kitchen and made coffee, before I realized that I WALKED into the kitchen to make coffee! A marvelous thing! I hadn't walked that far in years!

So I'm sorry I can't give you more information... I figure that mostly, mine was a healing - But some of that which I have transmitted may help you.

Feel free to contact me - I know how lonesome this can get... Sometimes it;' nice to just have someone else who understands and believes you.

And PS: Try 'Refresh Advanced' eye drops in your eyes twice daily.

I have fibromyalgia along with diabetes (with very painful diabetic neuropathy in my legs and hands)and degenerative disc disease in lower back and neck, (I am getting an MRI tomorrow of my spine, it has been years since my last one. I am mostly in a wheel chair now and on disability for over 6 years. If it's not MS it's usually (not always) fibro. Why are you afraid of pain management? They just work with you on ways to help you control your pain, be it physical therapy or maybe pain meds, or ways of occupying the mind to help you through the pains. I do not go anymore as they have done all they can. There are only 2 meds that help me, tramadol and medical marijuana. I cook and drink the marijuana not smoke it. I have never gotten high. Is it D3 that you take? That is the important one to check and take, not just plain D. Without D3 my back hurts worse. I have to take 10,000 units daily. And labs are done to make sure I don't go too high.
I am now battling colon cancer, which I am scheduled for surgery on the 10th---for the fibro I take magnesium, but only magnesium malate(there are different kinds, the malate is the best for fibro) If you get diarrhea you are taking too much. Muscle relaxants helped me a lot with my irritable bowel symptoms, and eventually that got better even without the relaxants.
Be careful with Tylenol, I was a dialysis tech for 20 years and I lost count of how many people I dialyzed because of kidney failure due to Tylenol use.

mmksparbud said:

I have fibromyalgia along with diabetes (with very painful diabetic neuropathy in my legs and hands)and degenerative disc disease in lower back and neck, (I am getting an MRI tomorrow of my spine, it has been years since my last one. I am mostly in a wheel chair now and on disability for over 6 years. If it's not MS it's usually (not always) fibro. Why are you afraid of pain management? They just work with you on ways to help you control your pain, be it physical therapy or maybe pain meds, or ways of occupying the mind to help you through the pains. I do not go anymore as they have done all they can. There are only 2 meds that help me, tramadol and medical marijuana. I cook and drink the marijuana not smoke it. I have never gotten high. Is it D3 that you take? That is the important one to check and take, not just plain D. Without D3 my back hurts worse. I have to take 10,000 units daily. And labs are done to make sure I don't go too high.
I am now battling colon cancer, which I am scheduled for surgery on the 10th---for the fibro I take magnesium, but only magnesium malate(there are different kinds, the malate is the best for fibro) If you get diarrhea you are taking too much. Muscle relaxants helped me a lot with my irritable bowel symptoms, and eventually that got better even without the relaxants.
Be careful with Tylenol, I was a dialysis tech for 20 years and I lost count of how many people I dialyzed because of kidney failure due to Tylenol use.

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how much magnesium should you take for FM?

I have that too, as well as severe OA, and symptoms of MS too, like the eyeball pain.

balance issues and weakness too.

I think you have to see a neurologist to get checked for MS, or is it someone else?

JAM2b said:

I'm very tired of struggling through this phase of not knowing and not being able to do anything about it. It has gone on for almost 20 years and is worse now than ever.

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I hear you. I've had an undiagnosed illness for several years, which sometimes flares and dies, and I've tried everything. It's so hard when you don't know what it is because doctors and others just think it's in your head.

I believe you though. We think because it's 2017 that medicine should be as advanced as our smart phones (and in some ways, it is), but there is so much about the human body we don't understand. I know several people with debilitating, undiagnosed illnesses. And they just fall under the radar. No one walks 5k's for them. Doctors dismiss them as somatic. And you're left alone wondering if someone will ever take you seriously.

But don't give up! I was significantly worse years ago and am not at a manageable state. I think it was a combination of God's healing (I had many people praying for me) and some homeopathic medicine. Keep the fight. Keep relying on Him. And I will be praying for you!

I have been getting checkups regularly for many years. They always draw blood and my doctor has it in time for my appointment.
Recently she noticed a heart murmur, "quite loud" she said. So they run me through all the heart tests. The stress test indicated severe arterial blockage. I was scheduled for angioplasty.
Just prior to rolling me into the operating room they take one last blood test. The results...very low hemoglobin.
Like yourself I had an array of physical symtoms. But never before had my blood been checked for hemoglobin, just the basic stuff.
They went ahead with the procedure to find that I had very moderate blockage.
Low hemoglobin had mimiced heart damage and severe arterial blockage.

Check out the encouragement thread in this forum and please add some encouragement yourself
Encouragement thread for chronic pain and disability

JAM2b said:

I've never been checked for allergies.

My symptoms are so broad I never thought they were connected before but because it is all worse, I believe that is now.

The symptoms are:
tiredness, both sleepiness and physical exhaustion

Mental fog

Muscle weakness, spasms, tension, cramps in all areas of my body

Numbness or tingling in my arms, legs, feet, hands, face, lips, and tongue

Tremor or muscle shakiness that cause leg wobble, inability to maintain balance without conscious effort and clumsiness with my hands and fingers which causes messy work, spills, cuts and burns

Sometimes when I walk one of my legs won't move, or won't move fully. I struggle regain/maintain balance.

Heat and cold sensations when there should not be

Bladder issues

Intestinal and bowel issues. I'm usually constipated and it usually ends with diarrhea then goes back to constipation

My food does not fully digest. It often passes through in a state that is still identifiable.

A new thing is sudden nausea and puking. I will be fine, then have to vomit, and be fine again in a matter of minutes.

Another relatively new thing is eye floaters, blurriness, and eyeball pain. I have also developed difficulty driving at night because of halos and difficulty determining depth and distance at night.

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Jam2b,

I've not been to this forum in years. Tonight, as fate would have it, I came here on a whim, and your thread was the first I read.

You need to know that ALL of the symptoms you have listed above are exactly what my husband is experiencing. He became ill about 5 years ago, numbness, fatigue, balance issues, falling down . . . It has been a long, hard road and he is still very sick and disabled. Can not walk or stand or drive anymore. He tested positive by Igenex labs for Lyme disease and will be seeing a Lyme specialist in Missouri, named Dr.Crist on Feb.2. I can not stress enough: Your symptoms are identical to his. I believe you have advanced neurological Lyme disease. You need to research it online, be Igenex tested (Elisa and other tests are NOT accurate), and you need to find the closest LLMD (Lyme Literate Medical Doctor) in your area. Other doctors are either uneducated in Lyme, or they are in denial (the politics spoken of by another poster who mentioned Lyme), and you must know that doctors are even being closed down that try to treat Lyme patients. My husband's first Lyme doctor was closed down in the middle of his treatment.

My husband is a very sick man. He was tall and strong and this disease has crippled him, leaving him incredibly weak, always exhausted, and unable to walk, stand, or balance. Even the constipation followed by diarrhea fits exactly. Eye floaters, everything.

Please do your best to check into the possibility of Lyme, even if you don't recall being tick bit, because a tick nymph is only the size of a small freckle (you might not have seen it), and not everyone gets the initial bulleye rash, either.

This disease is spreading cross country like wildfire, and the medical community has yet to wake up. My husband was misdiagnosed with MS, initially, and wasted two years that he could have been treated for Lyme. Lyme also presents with a number of possible co-infections that further complicate the disease and symptoms. Ticks are a literal cesspool of pathogenic bacteria!

I hope you see this mssg., because I understand too well the hell you have been going through. This disease left untreated can slowly kill, so please seek appropriate testing and treatment by an LLMD.

- Rainah

JAM2b said:

I have switched jobs and am currently without insurance until after my first 90 days are up. I had decided to continue with the exercises, and I've been reading about the Swank Diet. Even if Multiple Sclerosis is not what I have, I do have the symptoms. I'm hoping the diet will offer some relief. I usually don't like extreme diets or natural remedies without doctor recommendation with clinical diagnosis. However, the Swank diet isn't too different from what I usually do anyway, and it has been put out there by a neurologist who studied the effects of diet on MS.

On the up side, I am having a better winter than I have for the last 3 or 4. Usually Nov through March is very hard on me physically. However last year my symptoms stayed bad and got worse even after March, and it continued through part of November. About mid-Nov, they began to ease up. I'm better now than I was then. I do still have symptoms, but they are not as bad as they were. I expect them to get bad again, but hopefully it won't be for a long time or get as severe.

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Hello. I will like to offer just a bit of advice. See, we were all made with a body that functions the same way. All out organs have the same responsibilities and need the same things to work. If your body is deficient in what your body needs to function properly you run into problems. Nobody gets sick because they had a drug deficiency. Standard medicine, does not address the primary cause of illness in the majority of cases but they offer disease management strategies and that is what the drugs help with. Drugs help to manage disease. Are you taking any comprehensive nutritional supplements to give you a broad base of the nutrients that your body needs to function? Dr Joel Wallach who was honoured by the United Nations for his work in Natural Medicine has helped many people using solid nutritional strategies because it provides the body with what it needs to work. You should look into his work and research him.