[ldshrubb]

Posted previously that was to have an MRI scan, and was hopeful, finally someone would say " I know whats wrong, and this is what we can do about it!" That has not happened, and I am feeling really down:sad:

I saw my rhuemy yesterday, who had the scan results, and results from all the bloods taken(including APS), and all 'normal'! Why is it that I dont feel normal then! Is having a numb left of your face, weaker left side , constantly exhusted, mouth full of ulcers, and falling over normal?

I feel like screaming, except do not have the energy! He is to refer me to a neuro, and for some physio. Still got the feeling that he thought all I needed was a decent night sleep, and all will be well. If only.

Anyone have any similar symptoms? Or even felt like they too must be mad, and I am dreaming these symptoms? Help :worried:

 

[Katharine]

Hi there,

No, obviously, those things are not normal and no, I'm quite sure it is not all in your head.

I think many many of us have had clear scans of all sorts despite relatively severe symptoms. My MRI's are also quite normal apart from "ferrous deposits usually seen at an older age" (sorry but that phrase always makes me laugh, proof that I'm rusting :rotfl.

It's good that you have been referred to a neuro. It's important that you don't diminish your concerns in front of the neuro or start to imagine that it is indeed in your head.

I'm afraid I don't have any other brilliant suggestions other than to keep plodding away and pestering the docs until they come up with some answers.

hugs :hug:
Katharine

 

[onetay]

idshrubb,
Let's start with you are not dreaming because if you were when you woke up they would be gone (and you have to wake up sometime). I know I have felt the way you are feeling and more than once. Even with the dx of sle, I get the feeling sometimes that the doctors think since they have pretty normal blood work and don't see very much to be causing the problems then they must be in my head. Newsflash THEY AREN'T IN ANY OF OUR HEADS. We all feel the way we do for a reason. The medical and science communities are focused on if you can't see it, it must not be there. Constant fatigue and pain is not in our head, it is real and we just have to make them see it is all. How do we do that? I am not sure because we (meaning me, I don't want to speak for everyone here) look pretty normal for the most part we just feel like we have been hit by a truck and they backed up cause it was so much fun the first time to do it again. You seems to be having some physical signs that they can see so why they are not finding anything is hard for me to explain. My advice to you is not to give up and keep looking for the answer it is there and someone will find it. You are not imaging your symptoms as they are there, so just figure out away to make them see what it is that they need to. I wish you all the luck and let me know how things are going with you. I hope you feel better soon.

 

[granny weatherwax]

Hey there

As Katherine said I am sure that there are many who can sympathise with you here. When my symptoms started to get worse in the first instance and I kept going to the doctor, they said "oh your just depressed" and I started to wonder if I was imagining things. Then I started not only having the cripling fatigue, muscle and joint pains but the "brain fog". I felt like I had alzheimers it was awful and I just didn't have anyone to talk to. Eventually I got a nasty rash so the doctor sent me to a dermatologist and it wasn't until he tested me and I wasn't allergic that they sent me to the rheumy.

More recently I've been having some wicked dizzy spelly. They sent me for an MRI but couldn't find a diagnosis as they couldn't see anything on the scan (hey ho) didn't stop the attacks though.

It can be so frustrating to have these horrible symptoms and feel so alone and there is nowhere to turn and you are not getting any answers. I have found the people on the site a font of knowledge and wisdom and they have kept me sane on more than one occasion. They understand and better still they have been there and experience the ups and downs.

I hope that you find the answers you are looking for soon and that you start to feel well.

Claire

 

[lazylegs]

Like Katharine Claire said many of us have had negative scans. Mine were negative for years before finally getting a positive one. That didn't mean there wasn't disease activity going on.

A good neurology work-up is definitely in order. In preparation for the appointment I suggest you think back to when these symptoms first began. Make a journal beginning with the first symptom you noticed and continue from there. Be very detailed. Then also enter how the symptoms have affected your daily life. Simple things like being able to pick up a cup but not being able to hold it once you do or you fall more consistently to one side than the other. Something else to think about ahead are your falls. When you fall could you feel it coming or do you just find yourself on the floor? Do you wake up weak or is it progressive during the day? Each little piece of information will give the neurologist a better idea of what is going on.

The tests the doctor will do are very simple. The first time I went I was shocked how little they did and couldn't see what they had learned from it. However each little scratch or thump serves a purpose in diagnosing you properly.

Good luck with your appointment. Definitely let us know how it goes.

Take care,
Lazylegs

 

[ldshrubb]

Thank you all for your responses. It is good to know i am not alone, although would not wish it on any of you! Will keep a record of my falls, and dizzy spells, it does help jog your memory, what thereis of it!

 

[appleorch]

i have had symptoms since my second child was born almost 14 years ago and i still havent had a diagnosis, but the sypmtoms are real, i have just had all bloods done again and again the same as b4, low white cell and platlete count, a little aneamic but no reasons why,, i keep going back as i am always so tired now, ad again they cant find a reason for this either. so keep being persistent, and tell doc every little detail howeer trivial u think it is.. it may help.. good luck heidi

 

[Douglas]

Howdy Idshrubb,
You wrote, "I feel like screaming, except do not have the energy!"
I'm willing to bet that every single one of us on this message board have felt exactly like that at some (or many) point(s).
May things improve for you quickly!
Douglas+

 

[Jesse88]

Have you ever watched "Mystery Diagnosis" on the Health Channel? I can't tell you the number of times a patient went to doctor after doctor looking for some help and got test after test that came back normal. Finally, some wise doctor in some faraway land figures out just the right "out of left field" type of test, or figures out a reason for the odd symptoms, and the patient is diagnosed. Sometimes symptoms have to get worse before they get to it, but my point is, regardless of all those negative tests, the problem was NOT in their heads.

Now I don't know you or your history, but if you feel certain that something's wrong, you are probably right and you need to keep after this until you get the answer. Many of us have had to wait years for a dx, knowing we were just "not right" but not being able to prove it with tests. You and your doctors may just need to dig a little deeper. Good luck. There's a certain relief and vindication in being able to say "See! I told you there's something wrong. I knew it!" Not that we want to be sick, but if we have to be, it helps to be believed so we can get the medication that we need.

 

[ldshrubb]

Thanks for that. My GP is great, in that he knows something is wrong with me, and is supportive. My consultant is different though, makes me feel like an inch tall! Not sure how a neuro will react. Time will tell no doubt.

I take so much medication, such as pred 5mg daily, anti-malarial, sulphsalazine, pregabalin, fluoxitine, amitriptyline, clonazipam not to mention pain killers, and anti-inflam meds. Surley not taking this if nothing wrong!

 

[Clare.T]

Hello idshrubb
I am sorry you are feeling so rough, not getting enough help and have a dismissive rheumy to add insult to injury.
I suppose all the usual blood work was done and there is nothing abnormal at all, not even any anemia.
Since you are taking Plaquenil, your doctor must think you have an autoimmune connective tissue disease but I wonder why you are taking sulfasalazine which is not usually used for treating lupus and lupus variants, although it is used for rheumatoid arthritis
It is known to sometimes cause lupus like disease and also cause flares and worsening. Other drugs like methotrexate are used for lupus arthritis and Imuran /azathioprine is commonly in use too.
I hope the neuro will have some insight so push like crazy for that appointment. The rheumy sounds like the sort who might easily forget. I am pretty sure that a normal scan doesn't mean you don't have neuro problems. Seronegative APS does exist but the tests should be done more than once if this was the first time they have been done.

All the best and hugs
Clare

 

[workingthruit]

not all in your head

My doctors, family and friends all did not believe me until I got my test results back. It can be isolating but trust in your own intuition and be your own detective. Keep records of everything. Its taken me 1 year to get some answers and even now its still very elusive....

 

[workingthruit]

Sulpha drugs are bad for LUPUS

I either have a lupus like reaction as a rresult of the sulpha drug I took or the sulpha drug made the lupus I already had Waaaaaaaaaay worse. My doc immediately took me off the sulpha

 

[pollianna]

I am sorry your feeling so bad right now. I am amazed that you are on the drugs you are and still wondering. You have something going on and your being treated, no rheumy should make you feel like that.

It's hard to sit there like a child and hope they understand our journey to get there, time and emotion all spent in hope that we will be helped. I wonder how some doctors can detatch so much. I have sat and told specialists as they looked at me puzzled, obviousely wondering just how nuts I was, I don't have Munchousens I'm ill, not swallowing spoons :lol:

keep strong and believe in yourself, don't let anyone take that away from you

P xx