Fed up.

F

Fuzzyhead

Senior Member
Messages
372
Been ill 18yrs and had no diagnosis only m.e/cfs. I had a few lesions on a brain scan 5 years ago after having 2 clear ones in the previous years. I had a spinal tap and evoke potential test and both were negative so neuro said wait 2 yrs and re scan. I rescan and the few i had had shrunk in size and no new ones so neuro said not ms. I tested weak positive for lyme disease but no dr in the uk would accept and treat on this result. About 3 weeks ago i started with dizziness when bending/ laying down and getting up. I then had tingles in my left temple area and all the left side of my face felt pressure and like i had been punched. My eye, ear and back of head all on left. Dr sending me for another brain mri. Im sick of all the years of no diagnosis and seem still no further forward.

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Hufsamor

Hufsamor

Senior Member
Messages
2,916
Location
Norway
Im sorry for your suffering.
It can be so hard sometimes.
Hang in there, so much science stuff going on those days,
I believe they are getting closer and closer a fix, or something to ease the pain.
:heart:
 
Raven Mom

Raven Mom

Messages
89
Location
Ontario, Canada
good luck, @Fuzzyhead ~ maybe the early MRI's will prove useful later. either demonstrating change in an area which is noteworthy and leads to some conclusion or once they learn something new to look for. it's hard to rest and take peace in state of pain and vastly-reduced efficacy but it sounds like your dr will be quick to take advantage of any new treatments that arise so that's a hope-island in the disappointment-stream, I hope for you...:heart:
 
Moof

Moof

Senior Member
Messages
778
Location
UK
Fuzzyhead said:
Im sick of all the years of no diagnosis and seem still no further forward.
Click to expand...

I've often found myself researching things that are treatable, even though I know it's ME. I've been ill since 1976, so my whole adult life. But as @Hufsamor says, there's real progress being made by some brilliant researchers, so I actually feel more optimistic than ever. Now that the technology is available, there's a really good chance they'll get at the underlying mechanism before too long. Hang on in there!
 
J

joanierav

Messages
63
i would be concerned about the "weak positive " lyme test. i would find a doctor to treat my lyme or else redo the weak positive one. once a doctor explained this to me "if you can hardly see a fingerprint" its still a fingerprint.

good luck, joanie
 
Mary

Mary

Moderator Resource
Messages
18,346
Location
Texas Hill Country
Fuzzyhead said:
I just panic when i get a new symptom, i suffer health anxiety since getting ill too. Always think the worst.
Click to expand...
I find meditation very helpful in calming my mind. A very simple meditation is just to focus on your breathing. from what I understand you can only think of one thing at a time so if you're paying attention to your breathing, you're not worrying about your health (or anything else). It brings me back to the present and is very calming. Sometimes I wake up in a bad mood or just discouraged and when I'm able to meditate a little, I feel myself calming down right away. And when I remember to "stay in the moment", "be here now" during the day, these phrases may sound trite, but it's how children are I think. They're not worrying about the future or the past, and it helps center me.

And there is so much more research going on right now, I am crossing my fingers for all of us! There's definitely more reason to be hopeful than 10 or even 5 years ago -
 
humanrising

humanrising

Senior Member
Messages
169
I am so sorry you have been dealing with this for so long.
Is it possible for you to get brain imaging test other then just standard MRI. if you could get a copy of "missed diagnosis" by Byron hyde he has a list of tests to get to rule our anything else that has ME/CSF symptoms. tests like a transcranial doppler, Queeg. MRI with contrast dye with specific emphasis on pituitary and something else I can't remember.
He discusses what and why of the tests and maybe if you give it a read maybe something will click for you and you could use the info to get the doc's to think outside they standard box. He believes that its important to make sure that other things that are not only treatable but might be fatal if not properly investigated can get ignored. I agree with him especially since our symptoms are often symptoms of other things we could have or have on top of ME. anyway its just a suggestion hang in there, my thoughts are with you!
 
F

Fuzzyhead

Senior Member
Messages
372
joanierav said:
i would be concerned about the "weak positive " lyme test. i would find a doctor to treat my lyme or else redo the weak positive one. once a doctor explained this to me "if you can hardly see a fingerprint" its still a fingerprint.

good luck, joanie
Click to expand...
I know joanie i never understand the weak positives, a positive is a positive. You can't be be weak positive pregnant, you are either pregnant or not.
 
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