When does someone finally listen

[sageoya]

I have been struggling with various symptoms for almost 2 years and have yet to be diagnosed. I have been keeping a journal of weird sensations and symptoms as then occur and some stay with me   I have been to neuro and ms specialist and ms specialist sai my symptoms didn't "scream" ms. Not sure what that means. Neuro says I have optic neuritis with complex migraines.

Odd symptoms are numbness and muscle stiffness mostly right leg  which started as pins and needles and at times feels like something crawling. But mostly just an annoying dull stiff calf to thigh muscle pain. Sometimes rib are feeling like a noose is being squeezed around me. Muscle stiffness worse at night or in temp changes.

Have had difficulty making it to the bathroom on time when I have spasms in weird places. My vision is spotty and fog machine cloudy ( as is my thinking /processing ) my speech has been affected as well as I have swollen glands in my neck throat area an difficulty swallowing.

Also experience extreme migraines and ringing in my ears. I have been beyond tired and have lost a strength in my right side mostly. Also alcohol effects me much more quickly now than it has in the past.

I am sure I am missing a few. I have brain lesions and a hermangioma on my spine but all other tests seem ok. I tested posting e for Epstein Barr in past as well as toxioplasmosis in the past. Until this all started almost 2 years ago I was healthy 46 yr old and now I am frustrated with the whole thing.

So my question is how do I get diagnosis and med to feel better.

[supermum_ms]

Hi and welcome,

Sorry but i'm a little confused and this new setup is making things harder.....you seem to have 2 different posts running at once and they seem to have slightly different symptoms or information in them, in this thread your saying your dx with "optic neuritis with complex migraines" and "I have brain lesions and a hermangioma on my spine" but in your other one you only mention "migraines in the morning. Then  episodes of blurred vision" and say your dx with "Demyelination of central nervous system" and "My brain MRI showed multiple lesions and two in particular in corpus callusum." and  "MRI was 1.5 tesla spinal was no lesions".

For my pea brain there's conflicting details so i can't really work out where to start helping, all I can offer.....if your symptoms are not under control enough, consider speaking to your neuro about your alternative or better symptom treatment options. You could also ask your neuro if i'm dx with Demyelination of central nervous system, what exactly are you waiting for to dx me and start disease modifying drugs?

Cheers.........JJ

[sageoya]

Thank you for your kind responses. I have been struggling but surviving with the changes.  I finally have found a specialist but he is following a wait and see approach. In the meantime I have concerns about my job and how this has changed my non work life substantially. Luckily I have supportive partner , adult children and other family and friends.

[Ufrustrated2]

yep, i ditto what alex says. i too thought i would find some "fixes" after diagnosis. but no fixes and have only found1-3 med professionals who actually listen and want to help manage MS/Ms secondary symptoms. sad to say, but that is true in my case.

hope you're luckier than some of us in that realm.

a pcp you connect with and who truly has some understanding of your situation helps. or in some cases, they just make your life worse simply due to you've run into a doc that isn't right for you and you not right for them.

[HVAC]

With out a diagnosis they can give you medications to feel better. I thought I would be diagnosed with MS then they would fix me. It does not work that way. They can give medicine for muscle spasms and nerve pain before you are diagnosed. The medications specificaly for MS slow progression they do not help with symptoms persay. I would get a good GP.

Alex

[kwarendorf]

Welcome to our group.

I'm sorry you've been unable to find answers. The diagnosing of anything neurological can be a long and frustration journey,

Symptoms of migraine, MS, Lyme disease and many others often overlap. Also, migraines can cause brain lesions, although I suspect their appearance and location might differ from MS lesions.

Optic neuritis is often associated with MS, but it's also a stand alone. Muscle fatigue and tightness (spasticity) are can also be tied to MS. But then again...

Beyond saying he didn't think your symptoms sounded MSish, did the specialist say anything? If I were in yopur shoes I would address the Optic Neuritis and complex migraines. You may find that your seemingly unrealted symptoms resolve.

Kyle