Many symptoms, no answers

[humblebrew]

I have been having a series of strange symptoms for the last 8 months and have not been feeling so great. After many doctor's visits I haven't figured much out. For anyone who has the patience to read my long post, I would greatly appreciate any ideas if you have them!

Here are the symptoms I've been having:

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Nearly constant shortness of breath - feel like I can't get enough air from deep breaths. This started gradually where I would feel it for about an hour a day and has continued to get worse to the point where it's nearly constant, 24/7. There are some nights where I wake up from a dead sleep almost gasping for air.

Numbness and tingling in both hands and feet - this was happening for about 6 months. The numbness/tingling has mostly gone away, but has turned into a feeling of weakness (below).

Weakness in right arm and right leg - The tingling/numbness subsided, but now I feel what I can best describe as weakness in my right arm and right leg. It seems to come and go, but I feel it several hours of the day.

Chest pressure/pain - It comes and goes, but I feel pressure in my chest (near where my heart is located) sometimes lasting a few hours at a time.

Lightheadedness / fogginess - This comes and goes, but it happens at least once a day where I feel foggy or lightheaded - almost like I'm stoned or something. Also, after talking for a somewhat long period of time or laughing a lot, I feel very lightheaded like I may pass out.

Ears feel full of pressure - This is a somewhat recent symptom (within the last month) but at least once or twice a day for a couple of hours, my ears feel full of pressure and I can't clear them by popping.

Headaches - This is also recent and started around the same time as the ear pressure. I've been having pressure in my head that sometimes lasts almost all day. I'm guessing the headaches and ear pressure are sinus-related, but I'm not sure how or if it's connected to the other symptoms. I also occasionally have periods of time where the top of my head feels abnormally warm.

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Here's the long list of doctors I have seen and the tests I have had done:

Primary doc - Did fairly extensive bloodwork. Everything came back normal (thyroid, CBC, vitamin levels, etc.)

Pulmonologist - Did chest x-ray, CT scan of chest, pulmonary function tests. All came back pretty much normal. Some levels were a tad low on the pulmonary function test, but still pretty much in the normal range. CT scan showed 2 tiny nodules in my lungs but the docs said they were nothing to be concerned about. They didn't think I had asthma.

Cardiologist - Did an EKG and Echocardiogram with ultrasound. The doctor said my heart looked great and he didn't think I had any heart issues.

Endocrinologist - Did more extensive bloodwork for possible thyroid issues. Everything came back normal.

ER doctor - One day, the breathing difficulties and fogginess were really freaking me out, so I went to the ER. The ER doc did some basic blood tests and an EKG (which I had already has one of these done a few months prior). They both came back normal. He thought my symptoms might be anxiety-related (which I think is not at all the case). He prescribed me Ativan to try. I tried it for a couple of weeks - basically just made my mind go numb and didn't help any of my symptoms.

Neurologist - Did reflex testing, EMG, and nerve conduction test - Everything was pretty much normal. EMG showed a little something in my right leg, but the doc said it wasn't much and it's pretty normal to see that in most people.

2nd Neurologist (wanted a 2nd opinion) - Also did simple reflex/strength testing in office - didn't see any issues. He said he thought MS was unlikely for me, but I talked him into ordering an MRI for my brain and cervical spine to rule out MS or other issues. I'm still waiting on the results for this - have a follow up next week.


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I'm a 29 year old male in relatively good shape. I eat a pretty healthy diet (gluten-free and almost no processed sugars). My only other medical issue is Crohn's disease, which I was diagnosed with about 8 years ago. My symptoms from that are pretty mild and mostly kept under control by my diet and an anti-inflammatory drug which I've been on for 8 years that has almost no side effects.

Anxiety has been brought up by a couple of doctors, but I really don't think this is anxiety-related. I'm a very laid back person, and I'm at a pretty good place in my life - I really don't have much to be anxious or stressed about. Also, anti-anxiety medication didn't relieve any of my symptoms. This "thing" feels like so much more than anxiety - I truly feel like something is off with my health.

I've kind of been put through the ringer with all of these doctors and tests, and I'm really getting tired of feeling this way. If anyone has any ideas, I would love to hear them. Thanks!

[humblebrew]

Just thought I would post an update in case it's helpful for anyone who stumbles across this post in the future...

I had the EMG and nerve conduction study done that I mentioned before and it came back mostly normal. My symptoms were continuing so I decided to go to a lyme disease specialist just to get tested and rule it out as a possibility.

I had 4 different blood tests done - 3 were from IGeneX, the lab in Northern California which specializes in lyme testing and one from a standard national lab. All came back positive for Lyme. I'm still a little skeptical since there is so much controversy surrounding lyme disease, but I spend a good amount of time hiking in the mountains and have had ticks on me before while hiking (although never recall a bite or rash), so it's definitely a possibility.

I have just started treatment for lyme which will involve a mix of herbals, vitamins, and most likely some antibiotics. I'm still a touch skeptical, but I won't lie, it was nice to finally receive some diagnosis and have a possibility for treatment. I'm still dealing with most of the symptoms I mentioned above, but the arm/leg weakness has let up a bit. The shortness of breath that I'm dealing with isn't too typical of lyme though, so I'm told it could be a co-infection that will need separate treatment.

I just started the treatment about a week ago, so I'll try to post an update in the future after I've been at it for a while.

[caregiver222]

I would suggest an MRA, which is an MRI with dye contrast to determine circulation. It appears you have a systemic issue, which could be caused by Lyme disease or an infectious agent. I would, somewhere along the line, get a hematological consult, because there are diseases of the red blood cells that can cause intermittant oxygen transport problems. The tingling and fogginess and difficulty breathing suggest such a possibility.This would not necessarily be revealed by the standard blood test.

[jemma116]

Thanks for the feedback.

It is good that you do not have MS albeit there are other tests you are going to be having.

With regard to the twitching, put it to your doctor whether your body is lacking in magnesium.  Make sure that you drink plenty of fluids so as not to become dehydrated.  Tingling sensations can also be a condition due to lack of Vitamin B12.

Lupus is a type of autoimmune arthritis.
As regards Lyme Disease, do you recall being bitten at some point.  Lyme disease is contracted by getting bitten by an infected tick. You would have seen a red mark like a dartboard.  If you have been anywhere in grassy and woodland areas that have sheep and deer or any garden where wildlife have access to it, then there is a possibility that you may have been bit.  

Not all ticks carry the bacteria.

[humblebrew]

Thanks you guys for taking the time to read my long post and write out such thoughtful responses.

@JodyDFB - I totally relate to your frustration with hearing that anxiety was the cause of your medical issues. I've heard that from several doctors too and I am about to slap the next doc who even mentions the word. :) I appreciate your good vibes!

@Caryopteris - thanks for the suggestion of vasculitis. I've stumbled across vasculitis a few times while searching online, but I haven't actually mentioned it to any of my doctors yet. I'll bring that up on my next appointment.

@jemma116 - thanks for taking the time to write a such long and thoughtful response. Definitely some stuff in there to consider.

Just to give an update, I had the MRI done of my brain and cervical spine and it came back totally clear. They saw no lesions or any other signs of MS. I know it sounds bad, but in a way, I was almost hoping for signs of MS just to have an answer to this thing. But I suppose not having MS is a good thing.

So now the hunt continues. Since my last post, along with all of my other symptoms, I also started having muscle twitching in all of my limbs, so that is freaking me out quite a bit. Unfortunately I can't stay away from Google and searching for muscle twitching and weakness brings up freaky stuff like ALS. The progression of my symptoms and my age tell me that it is very unlikely to be ALS, but of course I still think and worry about it even though I probably shouldn't.

After seeing my neurologist for the MRI results, he did some strength tests in the office and he did think that my left side, particularly my left finger and hand seemed to be weaker than it should. He scheduled me for an EMG and nerve conduction study next week, so I'm hoping to learn something from that.

I have also considered lyme disease, vasculitis, and lupus as possibilities, so I'm hoping to run those by my doctor too. But anyway, thanks again for your responses. I'll post an update if I find out anything useful. :)

[jemma116]

I have read all that your wrote listing all your symptoms.

It will be interesting to see what results you get from the MRI brain and cervical scan.

As I read each symptom one at a time this is what I wrote down on a sheet of paper as things sprang to my mind.

Gasping for breath and the feeling that you cannot get enough oxygen into your lungs and waking up gasping for breath :- asthma, anxiety, sleep apnea.        When I get feelings that I am trying to breath in deep and feel I am not getting enough oxygen, I consciously calm myself and breath out and after breathing out, I breath in again and by doing this I am able to satisfy the "hunger" for oxygen.

Although you have been told that you have 2 small nodules on your lung and your pulmonary test was a "tad" low but classed in the normal range, you are having symptoms of gasping for air so it may be worth you asking your doctor to prescribe you with a Sabutamol inhaler (Ventolin) that can open up your air passages when you are having an "attack".  If you do experience this again, do not panic.  The thing to remember is that the more you try to fill your lungs and still feel "hungry" for oxygen this can make you panic and very anxious.  Stay calm and breathe out and expel as much air out of your lungs as you can and then slowly breathe in again.  I find this does work for me and I was diagnosed as having asthma.

The tingling and numbness and weakness with pressure headaches and fullness in your ear, the following came to my mind:-

    Muscular/skeletal problems.  Having your cervical area examined will confirm whether there is degeneration or arthritic problems in your neck area.  Nerves being aggravated in this area can cause pins and needles and weakness in the arm.

Lower back problems can cause referred pain and pins and needles sensations to run down your legs and to your feet.  When you mention that this comes and goes, it is likely that every time you experience this sensation the nerves in the lumbar (lower back) are being aggravated.  This can be from degeneration (arthritis), from bad posture, and repetitive work that puts a lot of load bearing weight on your spine.

Pins and needles in your hands and fingers can also be from carpal tunnel problems. You have had nerve conduction tests and if you had carpal tunnel problems causing compression on the nerves, the test would have shown that.

   Pressure in your head and fullness in the ear:-  Sinus congestion either caused by a viral or bacterial infection or allergies.  The doctor should check your ears to ensure that there is no build up of wax and to examine that you do not have an infection in the middle ear.  Congestion in the Eustachian tubes can also cause uncomfortable feelings of fullness in the ears.  Holding your nose and trying to blow through your nose can sometimes unblock the Eustachian tubes if there is an "air lock".  
To help clear your sinuses and any blockage in the Eustachian tubes that may be the cause of your ear problem, do steam inhalations 4 times a day for a duration of 10 minutes each time.  To do steam inhalations, get a fair sized bowl and pour in very hot water into the bowl.  Add some Vick or olbas oil, bend your head over the bowl and cover your head and bowl with a towel and breathe the steam in through your nose and out through your mouth.  Take care not to get scalded.  You can also try nose sprays, but these can cause problems with too much use.  Decongestant medications can also unblock congestion, but these are not suitable for everyone and not to be used by people who have hypertension (high blood pressure).

If there is a bacterial infection, an antibiotic may help.  If you blow or cough up or spit out yellow or green phlegm/mucus, this is a good indication that you have an infection.

     High blood pressure - this can cause pressure in the head and sometimes dizziness.  

Although you say you do not suffer from stress and anxiety, it is surprising even if you feel you are calm how your blood pressure can increase due to stress.

Make sure that you have a good healthy diet with plenty of fruit and veg.  Drink water and fluids so you do not get dehydrated.  If you did drink a lot of caffeinated drinks and then cut down drastically, that too can cause withdrawal symptoms.

Hope that you get some answers soon so that you have start to feel better again.

Best wishes.

      

[Caryopteris]

I'll bet it's something like an autoimmune vasculitis.  If it is autoimmune, try to get them to have a pharmacy make you low-dose naltrexone.  It has fewer side effects by far than prednisone, although it is not FDA approved for much yet.  (Full-dose naltrexone is used for certain cancers).  

[JodyDFB]

Howdy!  I DID read the whole thing.  (No prob's.  ;)  I also write a lot, to ensure as much detail is included with my questions.  See for yourself:  http://www.medhelp.org/posts/Undiagnosed-Symptoms/Updated-status/show/2034069#post_9615261 )

I can relate to your situation.  ...Esp. the suggestion my symptoms are imagined.  I'm a very relaxed, confident person, too, with a virtually stress-free life.  In fact, my undiagnosed medical issue is about my only real stressor.  There is zero chance my own symptoms were caused by stress, and everyone who knows me knows this.   But it sure doesn't stop doctors from suggesting it.  >_<  I wonder what arbitrary excuse lazy doctors came up with before "stress" or "anxiety" became popular buzzwords?

Since developing this tricky issue, I've learned just how many people have serious, serious problems and, too often, are dismissed as imagining them.  I know two women who almost died because they couldn't get doctors to believe the severity of their symptoms.  A friend of a friend recently did die of the illness she couldn't convince doctors she had.

Thankfully, my ailment seems to be getting better, on its own.  It's been 15 months, so far.  No diagnosis yet, though.  I've about given-up trying.

I have no expertise to be able to tell you what might be wrong in your case.  Obtusely, some of your symptoms remind me a bit of the B6 toxicity I recently read about, here.  By any chance are you taking a vitamin B supplement?  Well...don't answer that.  ;)  I'm no expert.  Just consider reading up on it.  

In my own case, I've read about, and considered, many potential causes.  Many share a few of my symptoms, but never most of the symptoms, and rarely the main symptoms of any one condition.  I only mention that because you may discover (may have already discovered) that lots of conditions share symptoms.

I wish the very best for you.  I hope you have improvement in your symptoms or, better yet, an accurate diagnosis or reversal of the condition.  I'm sending good vibes your way!  :)