Forum

Strange Symptoms - No Answers

Hey All,

I was wondering if any of you can help me. The 7 months have been hard for me and I just want to start feeling better. I’m begging any of you to take a look at the below and let me know of any insight that you can possibly provide on the matter.
Over the last four months, I have been experiencing a wide range of strange and disturbing symptoms. I have not found any answers from a traditional healthcare standpoint and decided to reach out to you to see if you’ve heard of anything like this. Below, I will outline the symptoms that I have been experiencing along with the tests that I have done from a traditional healthcare standpoint. Again, ANY help that you can provide on this would be greatly appreciated.

I still feel that this could be MS as the symptoms seem to fit but the Brain/Spinal MRI ruled it out from what I have been told.

Major Symptoms and Concerns:

  1. Muscle Fasciculations - Calves, Face, Stomach, Legs, Triceps - No Cramping
  • Comes and goes with moderate severity - Worse after exertion
  1. Unprovoked Muscle Soreness/Pains + Joint Pain
  • Comes and goes unprovoked

  • Can be felt in legs, arms, chest, feet

  1. Chest Pains
  • Chest Pains/Arm Pains worsened with Stress

  • Can go into Jaw

  • No Shortness of Breath

  1. Hand Coordination - Feelings of off-balance while walking
  • Balance Tests Normal/Better when not paying attention

  • Missing objects when grabbing/missed keyboard strokes

  • Fine Motor Skills OK - Tieing Shoes, etc.

  1. Pins and Needles anywhere

-Occasional Numbness

  1. Heavy Anxiety Attacks
  • Nothing like I have ever seen before, horrible feelings of impending doom
  1. Oral Issues
  • Mouth Sores Formations/Tongue Pain
  1. Gastro
  • Heartburn (Something in Throat)/Burning in Sternum

  • Stomach upset and gas after eating

  1. Vision Floaters/Tinnitus in left ear

  2. Long-Term Frequent Urination - Stream/Start/Stop Issues - Sometimes

  3. Nerve Hypersensitivity - Along Toes, Sometimes Chest

  4. Sporadic Mental Confusion + Forgetfulness/Low Libido

  5. Blood Sores in Mouth and Mouth Ulcers - Random - Worse after eating - THIS SEEMS TO BE BETTER RECENTLY

  6. Decreased mental sharpness/Forgetfulness?

  7. Weird Finger Blister Formation - Right Middle Finger - Provoked from Writing/Typing/Fork Use

Family History: Diabetes, Rheumatoid Arthritis, Sarcoidosis, Parkinsons, Alzheimers, High Blood Pressure, Old Age Heart Attacks, Hyperparathyroidism, Distant Huntington’s (second cousin), No Allergies

Tests Completed (Last 5 Months):

Head CT Scan = Fine

CBC Blood Tests = Normal - Slightly low red blood cells and platelets - Slightly Varied - Consistent with all CBCs

Sed Rate Blood Test: Very Low = Normal

Vitamin B12 = Normal

Vitamin D = Low - 12/28

Magnesium = Low - One-Time Low - One-Time Normal

CMP (Metabolic Panel) = Normal

Physical Exams = Normal

Brian MRI = Normal

TSH = Slightly Low - Normal Since

ANA Positive = Slightly Off - May suggest an Autoimmune Disease - Normal Exam

Lupus Test = Negative

STD Tests = Negative

Cortisol = Normal

First and Second Lyme Test = Normal

EEG = Normal with Fainting

Full Spine MRI = Normal = Minor Disk Disease and Arthritis

Heavy Metals Blood Test = Normal

Celiac Blood Test = Positive - Negative Biopsy

Echo Scan= Normal

Multiple EKG = Normal - Always

Cardiac Enzyme Blood Test = Normal

Chest X-Ray= Normal x2

Heart Stress Test = Normal

Glucose Test = 49 = Retest Required

Magnesium x2 = Normal

Stool Parasite Test = Normal

Rheumatologist Meeting = Nothing Presenting after Full Exam

Folate = Normal

Basic Metabolic Panel x2 = Normal

Adolate = Normal

Parasites Stool Test - Negative

Western Blot x2 = Normal (3-4 Active Bands on either test)

CK (Creatine Kinase) - Most Recent = Normal

Sed Rate - Most Recent = Normal

Vitamin B12 - Most Recent = Normal

Babiesa and Rocky Mountain Lyme Tests - Negative

Hepatitis Panel = Normal

Vitamin E = Normal

Diabetes A1C x2 = Normal

METANEPHRINES, FRACT. LC/MS/MS, RANDOM URINE = Normal

C-Peptide = 1 Abnormal

Glucose - 1 time low - Now Normal

Copper = Normal

TSH (with antibodies) - Most Recent - Normal - 3.34

THYROID PEROXIDASE AB (TPO) = Normal - 17.76

MMA (Mythlynomic Acid) = Normal

Mold Allergen Blood Panel = Normal

Cereal Allergen Blood Panel = Normal

Full Neuro Exam x2 = Normal - Nothing Indicative - Flasictulations Beginin - NO EMG TEST NEEDED - NEXT NEURO 9/21

Basic Metabolic Panel x5 = Normal

Endoscopy = Normal - CELIAC/H Pylori BIOPSY NEGATIVE

Minor Colonoscopy - Normal

Testosterone - Low-Normal - Recent

Cortisol - Most Recent - Normal

Folate = Normal

Mast Cell Activation Syndrome - Clear Trypses and Urine Tests

7-Day Glucose Monitor - Normal - Excellent

Allergy Exam - Nothing to add/no concerns

Myasthenia Gravis Blood Test = Normal

Seratonin = Normal

Epstein Barr = Abnormal = 81/316/322

Infectious Diseases Specialist: Nothing to add - Awaiting to send Lyme Results and possible 3-week doxy.

Cardiologist: Nothing to add - Heart in Excellent Shape

Recent Sed Rate and CRP: Normal = Inflammation rate

C3A/C4A = Normal

Leptin = Normal

IGENX Lyme Tests = Looks to be negative - exception of Barrelious

Melenocyte Test = Normal

Mold Panel = Slight Positive

All Inflammation Markers = Negative

Brigham and Women’s Lyme: Negative

Recent Folate: Over 20 - HIGH

Recent B12: 1403 - HIGH

Recent CBC - Still enlarged RBC and Macrocytosis

MMA Test: .38 - Within the higher normal range

Homo-cysteine Test: First - Slightly Elevated

Mold Infections: Possibility

Fasting Homo-cysteine: Normal

Fasting MMA: Normal

Fasting B12: Normal

Fasting Basic Metabolic Panel: Normal

Water Lead Test: No Lead

I’ve basically learned to live with these symptoms at this point but I feel like things are getting worse. I keep getting told that I am find but I know that I am not. I find myself missing things sometimes when trying to grab something/missing keyboard keys, getting random rashes, etc. The most disturbing is the muscle twitching/random soreness that can occur anywhere on my body.

I am getting nowhere with traditional medicine at this point and I feel that doctors are scratching their heads.

My diet and exercise patterns have always been excellent and I do not take any medication.

I’m really very troubled by everything and am desperate at this point.

I would really appreciate any information that someone can provide on my issues.

Thank You,

your gp should be your main support with all this.

make sure you tell him/her about all of it.

there are other specialists you can be referred to.

bowel and bladder clinic is an easy one, in fact you can self refer to them.

at the very least your gp should listen to your concerns and try to find something that will help.

i’m at a loss as to what it could be but your gp is the way forward.

take care of yourself and be strong.

carole x

Hi Shelin

I’m really sorry, but you have bombarded us with a huge list of symptoms and test results. None of us are going to be able to say much more than that you need to go through your GP to find the best way forward for you.

The only thing I managed to pick out is that you’ve had neurological examinations which were normal and normal brain scans. It looks like most of your test results were normal (but I am not a doctor, so there is a huge amount of information that I just don’t understand) so I can understand your frustration.

It’s simply that I doubt anyone here is going to be able to help very much.

The only thing I can suggest is that you look at What Is FND - FND Hope International

Best of luck.

Sue

I’ve just realised, you’ve had an awful lot of tests. How on earth have you persuaded doctors right across the spectrum of specialties, to carry out all these tests? And all within the last 5 months.

Many people currently in limbo struggle to even get a blood test, let alone an MRI. Did you get the tests done privately? If you managed it on the NHS, I think a lot of people would love to know the secret of how to get so thoroughly tested.

Sue

Hey Sue,

Thanks for the link regarding functional neruo disorders, I’ve been taking a look at it and that, along with CFS, could possible be the cause as they both outline so many symptoms. I actually live in the US and have excellent insurance through my employer and will have even better insurance at my new job. Once you meet your max out of pocket for the year, you’re covered at 100%. Don’t get me wrong, I spent a few thousand to get to that point, but health comes first. I used to live in Canada and they have a similar system to the UK, if I was still there, I’d likely still be waiting on my first Brain MRI! However, most of this testing has only been done due to me being my own advocate and pushing for it. My body is telling me that something is off and regardless of whether others can see it or not, I know that it is there. On the other hand, all this testing had led to no answers. I am going to be meeting with another neurologist on Friday and will request a few more things. I am going to ask for an EMG test and NCS as well as a protein blood test, another CK test, and I guess the genetic testing for Huntingtons as my 2nd cousin has it. I do not think the EMG test will yield anything as the symptoms have stayed about the same over these last seven months.

I guess my main questions for the people suffering from MS is, do my symptoms fit? Does a brain and spinal MRI fully rule out MS? Do the legions take longer to appear sometimes?

Thanks for all the help!

Thanks Carole,

I keep him in the loop about basically everything though this has gone pretty fair above his expertise at this point. However, most of the testing has been ordered through him and he doesn’t seem to mind doing it or referring me places as needed.

You take care as well.

Thanks,

Hi

Yes, from an amateur perspective, clear MRIs of brain and spine does tend to rule MS out.

Have a look at https://www.mstrust.org.uk/a-z/mcdonald-criteria

The McDonald Criteria spells out what is necessary to be diagnosed with MS. I don’t think you can be diagnosed with no lesions at all.

The other diagnostic tools commonly used for MS diagnosis is Lumbar Puncture, I don’t think you’d mentioned that you’d had one (surprisingly given that you’ve had almost every other test!!), and Visual Evoked Potentials.

Looking back over your symptoms, although some might be experienced by a person with MS, there are quite a few that don’t really seem to fit - I don’t think - although some people with MS have all kinds of symptoms, so I could be wrong here, MS is an odd thing (eg. muscle and joint pain, gastrointestinal issues, oral symptoms, weird blisters, maybe some others too). Given that the neurological exams and MRIs have been negative, I suspect you can cross MS off your list.

I wish you all the best in your search for answers. Thanks for explaining how you’ve managed to get all the tests done. You are quite right about the NHS, just as in Canada, you’d probably still be waiting for an MRI scan or even a neurologists appointment.

Sue

Hi there…any help would be appreciated…i had MRI/EGG/BRAIN SCAN a few years back and it showed signs of possible MS…bit he was happy not to do any follow ups then as my pain had went away…a few years later i had blurry vison but it alao passed…at the minute im getting excurating shooting pain around my grion area and no tablets are helping…im awaiting another MRI to see whats going on but that cud be months away…anyone reccomend any drugs pre diagnioses?thanks