please help DESPERATE

[englishdave]

I know that may be a dramatic title, but in actual fact it doesn't get anywhere near to how i feel. I am at my wits end.

I am posting this on a number of boards so i apologise if you see this in more than one place. I also apologise if this is a little long winded.

I am a 41 year old, previously extremely fit / healthy male from the UK.

At the beginning of August this year, i became ill with flu like symptoms, tiredness, general malaise, tremor in my index fingers, low grade fever etc. I also had recurring perfectly round mouth cankers. I couldn't shake this off and visited my GP who took loads of blood tests. Shortly after i began getting really intense pains in my lower right rib area. It felt like my liver was twice the size it should be.

My liver was scanned along with spleen and kidneys. All normal. My bloods all came back fine, with the exception of raised Epstein Barr titres. My GP told me this was probably a flair of an old infection. Although i got the impression he didn't really know what was going on.

September came and went, as did the illness, some days didn't feel too bad, but most times i felt at best "wrong". October was the same, no improvements / changes.

in November i started to take olive leaf extract, L Lysine and milk thistle in an attempt to support my failing body. I revisited my GP, who did more blood, all still fine. Also began havig intermittent facial flushig / rash on cheek bones.

In mid November i began to feel incredibly dizzy / lightheaded and noticed a ringing in my ears (tinnitus) along with some minor cognitive issues like seeing letters the wrong way round.I was also getting really odd and and random muscle twitches / spasms in various parts of my body. I also had a really spaced out, wooly head feeling, really difficult to describe.

I ended up in the emergency dept. Of my local hospital on three consecutive evenings. I was assessed by three different Drs, more blood and head CT scan. All normal.i then went on to see 2 further drs on a ward. They could find nothing. The next day i went to see a neurologist who gave me the most thourough work up ive ever known... He could find no abnormalities.

Since then i have had more really odd symptons / sensations. Ive had some strange feelings on my tongue, almost like numbness, or if there are hairs on the tongue or throat. the twitching / spasms come and go absolutely everywhere. Ive had some crampy feelings in various parts of my legs and feet and a feeling that my ligaments are shortening. i sometimes get a feeling that something is crawling on my skin. I also sometimes get a feeling that someone has flicked water at me. The most bazaar thing though is above my left eyebrow... When i raise it, it feels odd and then feels like momentarily it doesnt drop down when i stop raising... Like i said, bazaar.

I have been back to my GP. He has listened, examined and says he can find nothing wrong. I have seen SEVEN doctors and a neurologist Doctor since November.

To top it all off ive now got the flu / chest / cough thing back again which has been recurring since this all started in August.

I am sorry i have droned on so much. I really am so desperate with all this. My life has become an existance that is isnt worth it. Any advice / help / similar stories would be gratefully received.

[jdcatt]

english dave- I've been visiting this MS forum for over a year now convinced I had MS. I presented to my neuro with lots of odd sensations along with muscles pain and like you had the cognitive issues as well and the fatigue. I also have issues with vertigo. My neuro is still wanting me to visit him every 3 months because of the symptoms I had. I think he thinks something neurological is brewing.

BUT- I have since developed other symptoms. I have a rash on the side of my face, I've developed lumps on some of my finger joints, I currently have 3 swollen fingers and experience lots muscle and joint pain. My right eye became inflamed over the summer and got pretty bad. Iritis.

My family doc now thinks I have inflammatory arthritis, we just don't know which one. All my blood work is coming out normal. He explained that it can take up of to ten years for some of these inflammatory autoimmune things to show up on tests.

I agree with COBOB, you need to see a rheumatologist. I've done lots of reading on several different types of arthritis and one of them presents with mouth sores. Autoimmune arthritis can present with neurological, gastrointestinal, dental, eye, skin/nail issues and several other ways to boot.

I wish you well. Truly.

[maxthecat9196]

I would be demanding for them to rule out Lupus- if for no other reason than to put my mind at ease.

Tammy

[COBOB]

Rash on cheeks, neurological symptoms, recurring perfectly round mouth cankers make me think of other autoimmune diseases, not MS.  Your best bet might be to see a Rheumatologist.  

Bob

[summerluvr]

Have they ruled out infections, like lung or ear infections?  Have you had a chest exray?  The dizzyness, rashes, coughing and throat sensation sound more like an infection to me.  Did you have thorough blood work?  Did they do tests that show inflamation such as the sed rate and others (sorry I can't name them, but there a specific blood tests) that might show something.

[kwarendorf]

Some of the sx you describe might be related to (tinnitus, muscle spasms) others don't sound familiar (rash, canker sores).

Blood test will not provide much information about MS. They are generally used to make sure sx are not related to something else. Tests used to dx MS include MRI of c-spine and brain and Lumbar Puncture.

Have you discussed these with your docs?