People with positive rheumatoid factor and muscle weakness

[dan062]

Hi guys,

I've been prowling the web for people with a positive rheumatoid factor, muscle weakness and no diagnosis --- I found at least five people with that combination here.

If any of you have since managed to get a diagnosis, could you please post what that was, as my doctors are at a loss.

My labs:

RF positive (titre varies between 50-70)
CK mild elevation (<2 times the reference range)
LDH slightly above reference range on one occasion. Now WNL.

Symptoms: left leg muscle weakness (not clinical), fasciculations, mild myoclonic jerks, dizziness, fatigue.
Brain and spine MRIs (the whole length of it) normal. ESR, CRP, ANCA, WCC, and every other blood test normal.

Seen neurologist and rheumatologist -- nobody has a clue, and no clear ideas how to evaluate this further! I feel pretty terrible day to day and find the waiting game difficult but am trying to get on with things.

I'm certain that this isn't ALS (I suspect that it's autoimmune), but I feel like there's definitely a neuromuscular component to it given the labs and symptoms.

Thanks in advance.

 

[Atsugi]

Sorry Dan. This isn't a site to discuss non-ALS issues. People with total body paralysis and a terminal disease do not have the time and energy to discuss non-ALS diagnoses here.

We're not doctors. We know ALS pretty well, but nothing else. I wish you luck getting satisfaction elsewhere.

 

[Nikki J]

Hi Dan
Those forums are kind of stepchildren and I think inactive. I am a mod but I do not even have access to them.
If the people you identified were diagnosed they probably moved on but you can see on their user profile ( click on their name and follow the dropdown menu) when they were last here. You could leave a visitor message on their page but if they are not visiting here they won't see it. Try posting on the neurotalk boards. There are neuromuscular diseases that are autoimmune ( like MMN) but I don't think they have a positive rf. good luck

 

[dan062]

Hi Nicki,

Thanks for your help. A couple do have RF positivity (myasthenia gravis and Churg Strauss. I'm not sure if there are others).

Sorry to everyone for impeding (I mean that sincerely).

 

[Kosmoskatten]

Rheumathoid Athritis and Sjogrens can give neurological manifestations, and have positive RF.

Lupus, MS, Neuropathies, Hyper- and hypothyroid, autoimmune diseases, can all have elevated or positive RF.

There are also a lot of other issues; bacterial infections, certain viruses, even syphilis. The scope is huge.

What I do not understand is that you say it varies between 50-70, do you mean 500-700u/mL. Otherwise, 60 is normal, and 70 is very very slightly elevated. I am guessing I might have misinterpreted the value conversion ( I am Swedish)

Anyway, this is NOT a general medical forum, and nothing you say sound the least like ALS. I answered your questions to give you a hint, but this is not the forum for you, your should log off. Best of luck!

 

[affected]

kosmos you tell him to log off but ask him to answer your questions...

I believe you also do not have an ALS diagnosis but have remained?

 

[Nikki J]

Ladies. OP has apparently moved on appropriately so. See last log on.
Tillie Kosmo did not directly ask questions more of a musing. And although not diagnosed I believe is being followed for an UMN syndrome. At one point she asked if she should remain and was encouraged to do so. Aside from her personal experience her educational background is valuable