Here we go again

New diagnosis and before diagnosis
1

Little bit about my symptoms. For the past 15 years, I have suffered from the following: back pain, slurred speech, difficulty walking, neck pain, leg spasms, overheating, fatigue, etc, etc, etc.

I went to doctors religiously for 2 years with no conclusive results. I gave up and started to hide/compensate for my continued symptoms! Now, 15 years later, same symptoms are worsening plus I now have dry eyes, dry mouth, flu like symptoms, wrist and ankle pain, tingling, etc. etc. etc.

Had an MRI (clear), EMG (clear) and a number of blood tests (all low but within “clear” range). Neruologists are again suggesting that I am fine and nothing wrong.

What do I do? I am not asking for medicine, I hold a full time career, married to my wife for 23 years with 4 kids and am financially stable. There is no reason for me to WANT to be sick (or I would not have hidden it for the last 13 years) yet I feel like I am being looked at as a hypochondriac. Ideally, I would love to just find out that I need to eat more veggies and will be magically healed, but life isn’t that simple

Where do I turn? should I request more tests or just go back to living with the pain and coping? Just getting depressed over the lack of a diagnosis.

2

When did you last have the tests you mention? I can’t tell from your post if it was 15 years ago, or recently, apologies for maybe being dense!!!

It took years for me to get a diagnosis… following being wrongly diagnosed with PPMS!

I was then diagnosed with HSP in 2011. It has many similarities to PPMS.

You need to keep asking for investigations.

You shouldn’t be hiding your symptoms as they won’t go away by themselves.

Pollx

3

hi

the problem with doctors is that they haven’t had the experience of symptoms like yours.

i agree with poll, keep on asking for further investigations.

don’t become too despondent though.

good luck

carole x

4

Sounds like you need to see a rheumatologist. Sounds like Sjögren’s syndrome. This can cause neurological symptoms but especially dry eyes and month pain in joints etc. Easily treated I believe.

Moyna

5

I was thinking Sjogren’s too. Another linked condition is lupus. Hope you get things sorted, 15 years is a long time x