[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. (Coders for tests were:
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

[en bloc]

Hi Phil,

Sorry to hear you have so much going, but welcome to neurotalk.

I don't know if what I have to offer will be helpful. However, several of your symptoms caught my eye.

Have they considered any autoimmune diseases...like Sjogren's? In Sjogren's, the attack is against the exocrine system and salivary glands. It might explain the swollen submandibular salivary gland, as well as, the tightness in the jaw (parotid) and tingling in the tongue. Malaise/fatigue is also quite common in AI diseases.

Also, Sjogren's can include a vast array of neurological manifestations. I have Sjogren's and have significant neuro complications, many of which you list.

Of course, your symptoms could be related to something completely different. However, it may not hurt to be evaluated by a rheumatologist for an autoimmnue presence. There are blood markers for certain AI diseases and other diagnostic tools...like lip biopsy.

As for the neuro complaints, I didn't see a skin biopsy. This test is the best way to check for small fiber neuropathy, since EMG and nerve conduction studies do not evaluate small fibers.

There are many (100+) causes of neuropathy. Diabetes and low B12 are easy to check. You might consider a glucose tolerance test and B12 level.

I'm sure others will be by with input as well.

[eva5667faliure]

hello,
i have found comfort and support here. wish you comfort upon your journey finding what your problem could be. it gets hard to stay positive. having a support system is important. i have many doctors on my train, my neurosurgeon is the auto drive at the moment. i am in spinal disorders and other sites here that have been very helpful. i suffer horrible pain all around. your list have a few of the symptoms i could say i share. good luck be well.

I can commiserate with you on your long list of symptoms & lack of easy resolution toward diagnosis! Pretty much what I came in with last June--except I arrived with a pot load of scared too. Can't point in any direction whatever but will say that someone from the Community Welcome team will be along & may suggest forums for you to re-post at where your posting will get more "oh, yes!" responses.

This is a terrific place for gathering solid information & for acquiring solid friendship & support--the kind that gets you thru the dark hours when you don't have answers but still have questions, when you want to justat someone but your old friends are sick of hearing it, when you want towithout being told to cheer up, things could be worse.

This is a good place to be & I'm glad you're here, Phil. I can't diagnose a goldurn thing, but I can listen, listen, not tell you how to feel, and listen. Knock on my Profile Page any ol' time if you want to visit.

Hope you get the answers soon.

C.G.

[phil_1972]

Thanks everyone for the input, welcome and suggestions. I'll keep you posted on how things develop.

Regards,

Phil