[Jeffrey]

But I hope they have.

I have not yet been dx'd with Lupus, my PCP and Rheumy think I have it but we are waiting for tests to come back. I hope no one minds if I ask this question. I get the strangest symptom. It usually happens when I am relaxing, when out of the blue it will feel like something tightly clamps one of my finger tips, or a pin has pricked it, or it will itch, or some other strange sensation will occur, no matter that the feeling in my finger tip though, the result is always the same, it is instantly followed by what feels like an invisible punch to my stomach then an invisible palm slap to my forehead (like when you hit your forehead with your own palm when you realize something). I instantly feel sick to my stomach and feel as if I have a stomach and head flu. I also feel dis-oriented. The flu symptoms only last about 5 minutes. The disorientation lasts for hours. I guess it can be called a brain fog. Sometimes this "incident" happens in clusters which can wipe me out for a couple of days. Then it won't occur for weeks.

Does anyone have any ideas?

I am in a situation I have read that so many of you are or have been in, my performance at work has gone from top notch to "are you even paying attention?"

My initial blood test showed blood and protien in the urine
It screened for ANA's but my Rheumy said it wasn't the right test so he is re-doing that as well as several other blood tests - I'll know more on June 23rd.

The standard Lyme test showed negative but I had my PCP do a new one I heard about called CD 57 - it came up negative. 60 to 360 is normal and I was 52. If you read what the scientists who discovered it say though 180 to 360 is normal. Anyway, my rheumy basically said hogwash to the whole Lyme theory. If the test don't show auto-immune, I'll buy my own 4 to 6 week of Doxycyclene and treat myself.

Sorry to go on. I'm a 47 year old male, frustrated, confused, and worried about watching my career as a project manager slip away from me because I can't stay awake and if I do manage to stay awake, I can't remember what I learned the day before.

Thanks for listening.

 

[Raglet]

you can get all sorts of weird stuff with seizure activity, and the disoriantation could fit with that, also the exhaustion - but this is only a guess. I have had epilepsy since birth so i tend to think in terms of seizure.

Have you talked to a doctor about this ? You may need a referral to a neurologist
cheers

raglet

 

[Jeffrey]

Thanks Raglet - I spent 8 days at the Mayo hooked up to their machines but I didn't have a single episode, I have had several EEG's - Nothing showed up. MRI's - Nothing showed up. I've had 2 gran mals (one of them witnessed by my Allergist) and about a million (more or less) partial seizures (smells, de ja vu, etc...). They have never been able to find anything. I also had all of the MS symptoms but the MRI's were clean so that was ruled out.

I was asking my Doctor how I could have all those symptoms including an episode of drop foot where my right foot dropped, recovered, 2 minutes later my left foot dropped, recovered, then my right foot again, then my left foot spasmed (I'm making a separate post about that) and the Nuero's couldn't find out and I said on top of that I am tired of my tongue being swollen all the time. She looked in my mouth and told me I had thrush and mouth ulcers, she connected that with the fact that I had recently had a UTI (rare for a guy), was complaining that my wrists and ankles were killing me but they were not swollen, had said I couldn't do yardwork anymore and I hated going out in the sun cause I got tired too fast and stayed tired, and that I had rashes that broke out in the sun. That's when the word Lupus came up. Now it's wait and see. From what I have read, it could be wait and wait and almost see, then wait and maybe see, then wait and actually see, then wait and not see, then wait and actually see again or wait and never see. I just want to know.

There I go again, getting therapy by writing.

 

[Katharine]

Hi Jeffrey and welcome

Don't worry about getting therapy by writing. It is great that we have a place like here to come to and that we are able to write. After all, who else could possibly understand these weird things going on with us that become so important in our lives but which are largely invisible for everyone else? Even for those of us that are lucky enough to have understanding partners and friends, it is nice not to have to burden them with every "little" weird thing that is happening.

I'm afraid I can't help on your specific symptom but wanted to say Hi :wavey: and welcome you.

bye for now,
Katharine

 

[KarolH]

Jeffrey,

I was dx with MS in 2005 and everything your describing is me to a T, except I do not have seizures.

Are you sure you do not have MS???

My first MRI was clean as a whistle. You do not have to have lesions on the brain to have MS.

Have you ever had a spinal tap done?

Did they do a EMG to see if your drop foot was coming from the brain or lumbar spine?

I hope you get some answers soon. You must be frustrated.

 

[Salopsally]

Just saying Hi Jeffrey.
Can understand your frustration. Not had your symptoms but understand how it is when nobody knows what your going through.
Great place this though. There is usually someone who can identify with you.
Take care
Sal x

 

[Jeffrey]

Thanks for all of your replies. As far as am I sure I don't have MS? I'm not sure of anything. MRI's of the spine and cervical were completely clean but the brain had two suspect 9mm ovals surrounded by old blood. They were not considered MS lesions and they were not considered problems. I had to show the MRI's to 3 Nuero's to even get an explanation of what "Old Blood" meant. It might not have been a big deal to the Nuero's but as a lay person, it freaked me out. As far as they could tell, it was from injuries I sustained as a child. Nothing I remember.

They also did EMG's but they didn't show anything out of the ordinary. Because everything else was ordinary they did not do a lumbar puncture. My Doctor has a test in mind she wants them to do if nothing shows up with the Rheumatologist.

Karol, are you telling me you have had the finger pains that trigger the stomachaches and headaches?

Thanks again for your replies and support everyone.

 

[KarolH]

Karol, are you telling me you have had the finger pains that trigger the stomachaches and headaches?

First of all my C Spine, T spine and L spine are all clean too.

If you suspect MS then please get yourself to a doctor who SPECIALIZES in MS.

There are MS clinics everywhere. Where are you located, in the US???

YES, I have had very similar things happen to me as you have described with finger pains that trigger other crazy things to happen.

Sometimes I get a pain in my side, near my ribs that will trigger the same reaction including feeling like someone has hit me in the head.

It is nerve impulses that are mis firing.

BTW, if you have Lyme too you may want to seek a LLMD....(Lyme Literate Medical Doctor)....IMHO.:wink2:

 

[halfpintfl]

Hi Jeff, so sorry about what you are going thru right now. But, now I am officially going to put my foot down and give you my 2cents worth of knowledge, cause that's all I have. Ready? I think that somebody "up-there" doesn't like you and is slapping the tar out of you so they can get a good laugh. I hope you acceprted that as my attempt at humor. Truthfully, the only thing that I can think of is to keep going to a Rheumy and a Neuro. Tell each one what the other one has done, and maybe together they will have a light-bulb go on at the same time. Do stay on this site, and maybe we can help in some way, even if it is just support, we are here.

 

[ercooley]

Lyme or Lupus

I'm new to the site and am in the same perdicerment yet reversed. I was diagnosed by a doc in California with Lyme, and was on 4 mths Doxy! Definately made things much worse. Now I have somewhere around 6 different docs trying to figure out what this is. I know the IFA lyme test that I was positive for is testing for antibodies, which are 80% lyme specific, and 20% chance of it being an antibody for MS, Lupus, and syphilis were the ones named specifically. Lyme is a hard diagnoses to get for sure right now, with all the contraversy over it. I see an infectious disease doctor at OHSU in July to see his take on it. Hang in there all these docs can make you crazy!

 

[fallinthruthecracks]

i have something similar but not exactly. i tend to have these body twitches. exp when i'm relaxed. when i'm about to fall asleep or just woke up. sometimes there will be a vocal tic too. i also have spells where i get disoriented at times. like there's a short circuit. it's hard to express ideas. feels like there is a disconnect. i also haven't been diagnosed. the severity/frequency varies alot.

 

[LolaLola]

Dear Jeffrey, Welcome and sorry to hear that work is such a struggle.
You say your joints are not swelling-that can often be the case in Lupus however much they hurt!

I get all sorts of bizarre neuro stuff happen to me. Lupus is a very variable illness. Diagnosis can sometimes take time, and certainly requires a Lupus specialist.

When odd symptoms happen to me and they are checked out and not easily explained I mentally put them in a compartment marked "Inconvenient but not Dangerous". May sound daft but it helps. Believe me, many of us would be forever at the Emergency Dept. with all the odd things that happen to us.

You stick around here, we have other men on the site, they will be glad to meet you too.
x Lola

 

[Douglas]

You write "As far as am I sure I don't have MS? I'm not sure of anything."
That is by far the best attitude. Autoimmune diseases are so unpredictable that to be sure of anything is daft.
Apart, perhaps, from being sure I am not pregnant, all the rest is up for grabs.
Good luck with it all!
Douglas+