[eddie001]

Hi gang,

For those of you who asked me to keep you up to date, here's some good news.

I had a good appointment with a doctor today. Without hesitation, he referred me to a neurologist at the hospital. My neurologist's appointment is in a mere week and a half's time!

While I was in the appointment my leg was having spasms. And the whole time he was listening to my chest with the stethoscope I was having a full body tremor which was mildly spasmodic. The pupils of my eyes were also both different sizes.

I didn't mention Lupus. I asked him if he could be straight with me and share his thoughts. I told him that I'm not afraid of anything except not knowing what's happening. He replied by saying that my symptoms are suggestive of something serious, along the lines of Multiple Sclerosis, but not necessarily. I should keep an open mind but not be taken by surprise. I thanked him.

So, thanks to all of you for your support and encouragement, without which, I wouldn't be moving forward!

Thank
Edward

 

[Barb G]

Hi Edward,

I'm so happy for you. I think you're finally on the path to getting the care you need. I'm sorry it took so many symptoms to get their attention though, but at least you finally have their attention.

Best wishes ...

Barb

 

[eddie001]

Thanks Barb. Fortunately, in terms of seeing doctors, my symptoms have become pretty reliable. Unfortunately, they are becoming a real nuisance, lol.

Take care Barb. I owe ya.

Ed

 

[x_claire_x]

Go you.. , I hope you find some answers with the next appointment at long last... don't forget to write down your thoughts and questions before the appointment though... nag nag nag!!

 

[Joandublin]

Hi Eddie

Bit of a double edged sword I imagine - glad to be getting some attention to your symptoms and yet not so glad to hear that its probably not something 'trivial'.

I wish you the very best of luck as your doctors work out whats causing your symptoms. Im intrigued about your location ...on the edge of an ocean... sounds idyllic!

Take care and thanks for the update
Joan:rose:

 

[eddie001]

Go you.. , I hope you find some answers with the next appointment at long last... don't forget to write down your thoughts and questions before the appointment though... nag nag nag!!

Hi x_claire_x,

I've gone from paying no attention to anything that happens for ten years, to recording everything. It's all there on my iPhone. Every time something happens, I email myself and that has the added benefit of also recording the date and time.

After that, it goes into a properly desktop-published chart using Adobe InDesign. My family medical history is a tree graph, with thumnails of each person's face and their disorders. My symptoms are in a graph grouped by category eg. neurological, blood, skin etc. The chart shows when they began and how severe they have been at various times.

The upshot of all this is that doctors can get a pretty perfect idea about me in just a few seconds. It saves stacks of time. The two who I've given that to both said it was extremely helpful.

I'm not worried about my next appointment really. Whatever is wrong with me is now speaking for itself, pretty clearly, and the kind of things I have are unfakeable, particularly the pupils of my eyes and uncontrolable spasms in my legs, which I now know how to provoke.

Thanks so much for your nice reply and encouragement Claire.

 

[eddie001]

Hi Joan, thanks.

Bit of a double edged sword I imagine - glad to be getting some attention to your symptoms and yet not so glad to hear that its probably not something 'trivial'.

Very glad to be headed in the right direction, but it was me who wouldn't see doctors for ten years. I always suspected it would catch up with me but am grateful it has taken so long. I'm at peace with all possible outcomes, all of which have been played out in my thoughts many times over the years.

Im intrigued about your location ...on the edge of an ocean... sounds idyllic!

Yeah, it's very nice here. My home is twenty yards from the sea. Winter is better than summer in some ways because the sea can be very dramatic in winter. The sound puts me to sleep. Now I just need a dog (although I'm holding off for the moment).

Edward

 

[pollianna]

Hi eddie, great news about your appointment. One thing I would like to say is a similar thing happened to me, my symptoms were so indicative of MS that I had a full body MRI. I did not have MS and the Neurologist diagnosed Fibromyalgia. Of course I didn't have fibromyalgia but once that label was on there it took me 10yrs to get to a Rheumy...

Have a look at fibro and make a list of all the symptoms you have that could not be Fibro related incase he springs that on you. it's better to thrash it out there and ask him/her to hold of diagnosis until the bloods are in.

I hope you find this meeting productive, break a leg :bigsmile:

 

[x_claire_x]

Hi Ed, I am glad you have made such a comprehensive study of your symptoms, that is a brilliant tool to have. I wish you all the best and am sure you would have already played the various outcomes out in your head. Also bear in mind that if you are not sure whether you have been given an adequate consultation, you can ask for another opinion. Have you ever been referred to a Rheumatologist? Let us know how it goes, what a journey you have had!
Take care, Claire.

 

[eddie001]

Hi Pollianna,

Have a look at fibro and make a list of all the symptoms you have that could not be Fibro related incase he springs that on you. it's better to thrash it out there and ask him/her to hold of diagnosis until the bloods are in.

Brilliant advice. I've just spent a couple of hours looking up fibromyalgia.

Bear in mind that for a whole decade I haven't paid any attention to anything I have. Haven't looked things up. Haven't done any research. Haven't seen doctors. Haven't put two and two together. Regardless of what happened, I wasn't interested.

For the last couple of weeks I've now been doing that and it has been very interesting. Looking up fibromyalgia was very useful because it also lets me define what my symptoms are not.

After reading the symptoms of fibro, it strikes me that they would have a very hard time pinning it on me. I don't have a single one of the fibro tender points. I don't have anything which could be described as a post-viral experience. My muscle pain doesn't arrive for no reason. My only stabbing pains are electrical, not muscular. My gastrointestinal stuff would appear to be caused by muscular problems (so my doctor surmised today - that is being left for the neurologist) and doesn't include the general IBS group of symptoms. My face is free from pain. I get muscle fatigue in particular parts of my body, but only when that specific area is weak to start with, not merely through exertion, and not generalised. Very little is generalised with me. I don't have a general malaise.

What I recently discovered is called 'Clonus', is not at all a feature of fibromyalgia. I have it in both ankles and both wrists. Electrical shocks, particularly in the brain, don't seem to be a feature of fibro either. The only references I can find to shocks in association with fibromyaligia, are by people who are still in limboland and looking for a diagnosis. My muscular pain, I've realised, isn't random. It features heavily in those of my limbs which have clonus. Clonus features spasticity, and spasticity causes muscle pain because the muscles are abnormally stretched. All of the above follows, or is made worse by, electrical shocks. Now that the shocks are back, I notice that things worsen or appear in the days following big shocks.

Very interesting though, and very good advice. Thanks for that Pollianna. Your name is very cool by the way.

I hope you find this meeting productive, break a leg :bigsmile:

I hope so too. :what:

 

[Lily]

Hi Edward :thumbs: good move on your part. It's great you have a good rundown of your symptoms and when they occurred, Neuro's are pretty big on that stuff and it will help him a great deal.

Good luck and don't forget to update us after your appt.

love
Lily

 

[eddie001]

Also bear in mind that if you are not sure whether you have been given an adequate consultation, you can ask for another opinion. Have you ever been referred to a Rheumatologist?

I saw a rheumatologist a couple of weeks ago. We didn't hit it off at all. I couldn't wait to get out.

Let us know how it goes, what a journey you have had!
Take care, Claire.

Thanks Claire!

 

[KarolH]

Hi Eddie,

Well I am glad your appointment went well and so happy your going to see a Neuro and so quickly too. I think I had asked you in a prior post if they ever looked at MS with you and if you ever had a spinal tap done.

Anyway this has been one heck of a journey for you but I am sure you will get answers. I also mentioned to you that I lived with the diagnosis of MS for 3+ years so I am more knowledgeable of MS then I am of Lupus, really.

I am learning about Lupus now and through this board and the wonderful people who are here and so helpful. I can offer you this; If in fact you are diagnosed with MS then any questions you may have feel free to ask me. I have so much knowledge of MS and have been through every test under the sun for MS.

Hard to say what is worse, MS or Lupus. They are similar and yet different in many ways too. The "clonus" that you mention is something I also have and one of the big things that made them think MS with me.

I read your story and I have many similarities to you from tremors to pupils being different sizes, etc.....What is important is you get a accurate diagnosis and get on with feeling better.

God Speed as you move ahead and let us know how it goes.

 

[eddie001]

Good luck and don't forget to update us after your appt.

love
Lily

Thanks Lily!

 

[eddie001]

I can offer you this; If in fact you are diagnosed with MS then any questions you may have feel free to ask me.

That's great Karol. I remember your previous post about your MS disgnosis.

What was it about your MS diagnosis that made you feel you were misdiagnosed? What did/do you have that didn't fit?

Ed

 

[Katharine]

Great news Eddie,

I hope it goes well for you. I'm sure you'll be well prepared

all the best,
Katharine

 

[KarolH]

What was it about your MS diagnosis that made you feel you were misdiagnosed? What did/do you have that didn't fit?/QUOTE]

Hmmmm, well to start it was what I call female intuition. Then I joined a MS forum and just like this forum I started to meet people and learn as much as I could about Multiple Sclerosis. As time went by I was realizing more and more that I was NOT like the majority of other people on the board.

I made 2 very close friends from the board that I developed a in person relationship with. They clearly had MS and again I was not like they were. Yes, MS can treat people differently yet my test results were not even like theirs. I became more and more convinced I did not have MS once I became educated about it.

The answer was always in my heart Eddie, I just knew it was the wrong diagnosis but there was contributing factors that helped me make up my mind and stand up to the doctors that kept saying I had MS.

It was not until 2008, almost a year ago that Lupus and other things clearly started showing up in my blood work. If that would not have happened then I would still be fighting the fight against all the doctors that jumped on each others band wagon to say I had a disease I clearly did not have.

Hope this makes sense to you. Follow your gut intuition as it speaks loud and clear. Educate and read all you can. Compare things, apples to apples and you will find your answer.

I wish you well and keep us posted.:wink2::wink2::wink2:

 

[pollianna]

Fantastic eddie, if you say all of that to a Neuro then he can't tag you with the fibro thing. I can't stress how much I detest that fibro*&^&*myalgia primary diagnosis :bigsmile:

I watched House last night and he said Pick your specialist and you pick your desease, rings true eah karol

Hold off as long as you can on diagnosis eddie as Karol has shown once they label you they can negate you

 

[eddie001]

I hope it goes well for you. I'm sure you'll be well prepared

Thanks Katharine!

Hmmmm, well to start it was what I call female intuition ... Hope this makes sense to you. Follow your gut intuition as it speaks loud and clear.

Hi Karol,

That's very interesting. You see, it's the same for me, just the other way around. I've started to realise that I'm not the same as people with Lupus.

Thanks for your encouragement regarding the neurologist. I'm not worried really. If I can't convince him I'm not okay, then I'm probably okay enough to walk away and not care about it, and that suits me fine. There will always be tomorrow and tomorrow may never come.

However, even the doctor I saw yesterday was writing out a hospital referral form within a few minutes of my arrival. "Do you mind if I refer you to a neurologist?"

If I went to the neurologist and did everything I could to persuade him I'm okay, I think I would fail miserably, LOL. They'd probably have to get ten male nurses to strap me down and put me in an MRI machine against my will, with me shouting: "I'm fine, I'm fine, let me go".

"We've detected five specs of spinal cord in the lesion that runs down your back".

Now I'm just getting plain silly!

 

[KarolH]

Your post has me laughinng. I mentioned to you that I am so afraid of tight places so MRI's for me are scary. I always take someone in with me and they rub my legs, the parts that stick out of the machine anyway. I know if they are touching me then I am not alone and it works. Sounds silly but it does work.

I always had MRI studies done with out dye first and then with dye. My brain looked good without the dye but once they gave me the gadolidium I glowed like a Christmas tree. Lesions are not always indicitve of MS yet it is part of the diagnosis.

A spinal tap is always helpful too. I had 2 of them and it always showed a very high protein level but NEVER any o bands........one of the differences between me and people who do have MS. Again, things that made me go hmmmmmmmm???

Keep us posted and best of luck to you moving ahead. Your a smart guy and I can tell your on the ball so keep on pushing forward until you get a answer. If it is the right answer, you will know it.:wink2: