At what point do you stop looking for an answer?

[Catlover80]

So after seeing 2 neuros, a rheumatologist, endocrinologist, 2 osteopaths, 2 GPs, having bloodwork taken almost 1x a month for the past year, MRI exam, and X-rays. I still have no answers and honestly I'm fed up and need a break mentally. All these test come back normal and I feel belittled by drs. The advice I'm given is ridiculous, during my last rheumatologist visit I was told to cut back on caffeine and get more exercise.

I'm so done with all of this. Any other limbo landers decide to take a break from pursuing a diagnosis? I'm so mentally drained right now.

[Phoenix822]

I'm so done with all of this. Any other limbo landers decide to take a break from pursuing a diagnosis? I'm so mentally drained right now.

I'm there. I'm tired of fighting. I don't have the energy for this and it all feels so futile. But then again... if my mom had been diagnosed sooner, she might be better off than she is today. And my grandmother - the soul of Rocky Balboa - submitted herself to two years of psychiatric treatment before anyone would even acknowledge that they ought to maybe START looking for a diagnosis.

I'm tired the condescension. I'm tired of getting that look that says all too clearly that I'm just an hysterical female inventing "symptoms" for sympathy or attention. But... if this thing that I have is MS, this thing that so closely mimics the MS of my mother and grandmother, do I really want to wait to start stopping it? If I don't fight to find out what is causing my medical issues, who will?

[JerryD]

Try to

Hello from 'across the pond' from Philadelphia. I hope that I used that phrase correctly. I saw your post and wanted to reply to let you know that someone 'out there' is wishing you positive thoughts. I just want to tell you that you have every right to seek out answers for your problems.
I would say that you should keep searching for answers. If you need to take a 'break' that's fine. Try to find something that will give you some peace of mind. Gardening or reading or yoga or meditation. You know something..anything. Good luck

[jskmssss]

Hi Catlover

I understand your frustration because I took a break for a while and now I am once again
getting tested. I have serveral brain lesions but not enough for a diagnosis. I probably have
had 6 MRIs over the last few years.
One neurologist told me he thought I had MS. He said it was probable MS and that I should see
a MS specialist. Went to a MS specialist who wanted me to have MRIs every 6 months. Some of
the MRIs said suspicious for MS, MS plaques, one even said one lesion was highlighted.
The Dr. however said not enough for DX. I got tired and stopped going since 2012. I moved to a new state and my new primary care Dr. sent me to a neuro due to complaints of my memory not being good. My memory is getting terrible, new neuro ordered all the tests again,
MRi, spinal tap, EVP test.
So here I go again... MRI and spinal taps next week.
My anxiety goes so high when I go for these tests. If I have it, I will deal with it but not knowing what is wrong is awful. I have the numbness in hands, bladder issues, balance issues, have had pain with one eye upon
movement two times but when I went to ophthalmologist, no optic neuritis.
Limboland is not a fun place to be. I know something is wrong, just wish the drs would find out what it is.
Hang in there. I can really empathize with you.

[hunterd]

during my seven yearsin limbo, I never stopped looking. I can understand your frustration and the need to take a break. During the time that I was looking for a diagnosis I think they drew blood so often that they had gallons of my blood! They ran different tests and they attributed all the results to my diabetes. I almost had a knee replacement during that time

[JerryD]

Well hunterd, they weren't too far off. Your doctors were thinking 'autoimmune' problems. Being in 'limbo' sucks. No doubt. I still say that you shouldn't stop searching for answers. Take a break for a couple of days or months. Good luck

[gomer]

I spent decades on & off seeking the answer. Like hunter my neuro sx were blamed on my diabetes. When I insisted something ELSE was wrong. .
.....
Drum roll...
.......
They made a sarcastic remark in my record, "vet thinks he is seriously ill" & sent me to their SHRINKS!

Even after the shrinks decided i was not nuts or even depressed, just "adamant" something else was wrong, the VA did not even believe their own shrinks.

Fast forward decades + & bingo. A new slert non-VA doc noticed a RED FLAG for ALS/MS.

GOMER .. Sir Falls-a-Lot

[Cat Mom]

I got dx right away and thought I had it worse than anyone on the planet... until I joined here and saw people in limbo like yourself. Take a mental break but please do not lose your fighting spirit. There has to be an answer somewhere, hang in there!
Jen

[mamarama]

I got dx right away and thought I had it worse than anyone on the planet... until I joined here and saw people in limbo like yourself. Take a mental break but please do not lose your fighting spirit. There has to be an answer somewhere, hang in there!
Jen

CatLover I can completely understand where you are coming from. I too am in Limbo, and unsure where this diagnostic journey will lead. I am trying to accept that the health problems may never get figured out, which oddly enough makes the journey feel both somewhat pointless yet less stressful.

Good luck to you!

[lahgarden]

Do you ever really give up?

Haven't posted here in ages.
After years of MRI's and "gallons" of blood draws too, I was sent for a muscle biopsy.

My Neuro thinks this "looks like an open and shut case of MS" but I don't have any lesions to prove it.
Coupled with 28 kidney stones it looked more to him like a Mitochondrial disorder or an inborn error of metabolism.

When the classic symptoms don't fall into the proper categories they think Mitochondrial stuff.

When you start digging into that world it's mind boggling.

Muscle biopsy revealed many different abnormalities but they were non specific-they didn't fit the criteria for any one single disease. The official report says "Not enough information to further classify the disease".


So I was to follow up with a geneticist. And insurance would not go for it.....

I can't exactly do anything about a genetic disorder and since it's not dx'd there's no support system.

It's ten years out and I know my limitations, I most identify with the MS peeps (except for the kidney probs) The muscle biopsy was expensive and invasive and I still don't have answers.

I've been dreaming lately about trying to get to my Neuro haven't seen him since 2012. That happens when my symptoms invade my sleep.

But the $5k health ins deductibles have put an end to the search. I muddle through with the double vision, ataxia, myoclonus, spasticity, blah blah blah.

I basically gave up.

[Lori Lee]

I have been searching for answers for almost 5 years. I had a major episode and was admitted to the hospital in August of 2010. Once the neurologist came in the next day the MS possibility was on the radar. I had all of the test to rule out the mimics.

I saw a Rheumatologist for awhile because I had a positive ANA and raynauds. Went to see the second Rheumatologist whom I really liked she sent me back to the neurologist and said this is much more sneaky and the symptoms were more neurological in nature. Suspected MS. My regular Neurologist referred me to a wonderful MS specialist because they felt it was most likely MS.

The first couple of years I was very aggressive in searching for answers and then I realized that without a second episode or New evidence on an MRI, I most likely would not get a diagnosis. My GP and my MS specialist are both very good. Both acknowledge that there is something wrong.

Personally, I HAD to make my peace with Limboland. I was a basket case the first year. I learned over time how to conserve my energy for the things I want to do. I decided after the second year that over all I wasn't doing that bad considering. Yes, I have flares and yes I have disability but I decided that I was going to live the best that I could. I was at peace that at least if I have issues I had Dr's I feel confident in and I had a place to go. So I kept my appointments and I stopped stressing the what ifs.

In January I started with weakness and extreme fatigue. I kept thinking I was just coming down with something because all of my symptoms go into overdrive before I come down with a cold or anything. Feb. I went to the GP and they sent me to the MS specialist. I hadn't been well for weeks and so I just had an MRI of the neck and C-spine for the first time in almost 2 years.

I forgot how the testing can get your hopes up. You hope this will be the time they find what they need to give you a diagnosis. Blah, Blah, Blah.

I would never give up searching but stepping back and breathing from time to time…. I strongly encourage you to try that.

I truly hope you find answers.

[Catlover80]

Just wanted to say how much I love this forum and all the members. It's nice that there are others who can relate to how I feel, it's comforting. Of course I wish we were all healthy and didn't have to be here. But anyways, thank you for responding

I've taken a break mentally thinking about my symptoms and hope for a diagnosis. I felt like if I didn't take that break then I would just sink into depression.

I pushed back and rescheduled my next neuro appointment in late May. I think spacing out appointments and not getting my hopes up is the best thing for me right now.

Hope everyone is doing ok mentally too

[mamarama]

Good luck, Catlover! I too dread the appointments. Whenever I go, it just leads to another appointment, like a game of whack-a-mole!

Just wanted to say how much I love this forum and all the members. It's nice that there are others who can relate to how I feel, it's comforting. Of course I wish we were all healthy and didn't have to be here. But anyways, thank you for responding

I've taken a break mentally thinking about my symptoms and hope for a diagnosis. I felt like if I didn't take that break then I would just sink into depression.

I pushed back and rescheduled my next neuro appointment in late May. I think spacing out appointments and not getting my hopes up is the best thing for me right now.

Hope everyone is doing ok mentally too