[phil_1972]

Dear all,

Apologies in advance for the long post but I really want to get to the bottom of this and would appreciate all the help that I can get in this regard. Please take a look at the symptoms I list and also the tests that have been run and share your opinion. Thanks a heap!

I am 38 year old male and generally in very good health. Never smoked. Use alcohol very moderately (perhaps 3-4 units per month). I was quite overweight but lost about 20kg’s over an eight month period through diet and exercise. I ran the a half-marathon on 1 May with no problems whatsoever.

I now realise that I had many of the same symptoms described below (including the swollen submandibular salivary gland, burning sensation in the legs, weakness in arms etc.) about 2 years ago. It was, however, much less severe and began to clear up just as I was resolving to go and see a doctor so I took no action.

1) I had a swollen and painful submandibular salivary gland for a few months. Saw a doctor about it on 4 May and he told me not to worry about it. It is now much better although it still sometimes ‘flares up’. It feels like the pain from the glands sometimes ‘migrates’ to the area above the collarbone
2) I had a very severe cold in the period straight after my visit to the doctor on 4 May.
3) Burning and tingling sensation on both feet and ankles. Started around 6 May and become quite severe.
4) It now feels like I am constantly stepping on something soft under the soles of my feet, present on both sides but more pronounced on the left. There are also some spots under my feet that feel ‘dead’. I especially notice it when I am barefoot in the shower.
5) Tingling sensation in both hands especially the pinkies, present on both sides but more pronounced on the left. Started around 28 May. My pinkies now often feel ‘asleep’ and stiff.
6) Weakness and pain in left arm, especially the area around the elbow and into the upper arm muscles. Started around 1 June.
7) ‘Full’ sensation in my left ear with slight pain.
8) Dull chest pain. This happened early on but does not seem to occur anymore.
9) Tightness in my jaw, comes and goes.
10) Tingling sensation on tongue.
11) Feelings of vertigo
12) General feeling of malaise. Struggle to get through the day at work.
13) Weakness in arms and legs. From around 20 June. Can’t do what I used to do in terms of lifting heavy objects and moving around.
14) Painful ‘weak’ sensation around eyes. As far as I can tell my eyesight is not affected although I am more sensitive to light than would normally be the case. I also struggle to focus sometimes.
15) My lips often feel very numb.

I am NOT overly fatigued and can still more or less function at work. My cognitive functions have also, as far as I can tell, not been affected. Something for which I am obviously very thankful. I am, however, more than a little anxious about all of this and this cannot but have an emotional impact.

I might just add that I have no prior history of psychological problems or mental disturbances. I am also not under significant strain in my personal and professional life.

I took all of this to my doctor who immediately sent me to a neurologist. He tested me for just about everything you can shake a stick at, including:
1) Blood tests ruling out diabetes, thyroid trouble, myasthenia gravis etc. (Codes for tests were:FBE, ESR, E/LFT, TSH, HDL, PSA, CRP)
2) A nerve conductivity test
3) A visually evoked potential test
4) An MRI of both my brain and cervical spine
5) Two thorough neurological exams

The end result: No clear cause. To quote from the neurologist report: "Visual acuity wat 6/6 bilaterally with normal fundus examination. Motor examination was unremarkable with well preserved and symmetrical reflexes bilaterally and downgoing plantars. Sensory examination was also unremarkable. Romberg's was negative. Multiple investigations including MRI Scan of the brain and C Spine, nerve conduction tests and visual evoked responses were normal. A multitude of blood tests have come back normal including the inflammatory markers. We have not discovered any structural basis for his multiple symptoms."

On one level this is probably reassuring but it still leaves me with said 'multiple symptoms' making life really difficult.

Apologies, once again, for the long post but I would like to paint as full a picture as possible. Thanks so much for reading!

Phil

[mrsD]

I think anyone with vague constitutional symptoms and peripheral symptoms should have a B12 test and Vit D test.

Get the numbers and do not accept "normal"... this is because lab ranges are out of date with these two nutrients.

Also if you can find out your TSH actual value. Also your A1C.
TSH ranges vary too...and if you are at 5 or more you may be hypothyroid. The new range goes to 3 as normal.

Low fasting glucoses, also may suggest reactive hypoglycemia, which is a prelude to diabetes.

Were you tested for blood proteins? IgM etc? Increased blood viscosity may give symptoms of fatigue etc.

Tingling and numbness around the lips can mean a calcium problem. This can happen when Vit D is very low. When D is very low calcium is not absorbed well from food in your diet or from supplements.

Were you tested for gluten intolerance?

[en bloc]

I posted a reply in the New Member Introduction section yesterday, where you first started your thread. I don't know how to transfer it here, but hopefully you read it there.

In short, I would consider an autoimmune work up due to the salivary gland swelling, jaw tightness (might involve the parotid gland), tingling in the tongue, and the malaise/fatigue. I would include Sjogren's in the testing since these glands fall into this syndrome.

Also, small fiber neuropathy cannot be determined with EMG or nerve conduction studies, so you may what to inquire about skin punch biopsy.