Would like some opinions

[Grandstaff]

Hi! New here and would like some opinions and feedback.
I'm a 36 yr old female happily married with 3 beautiful children that need their mommy back!
My health has been declining over the last five years. I have on average 4 relapses a year with fatique, dizziness, numbness/tingling of face, arms, legs and feet. Migraines with and without aura smelling burnt smell. Double vision and one time went to ER for a squeezing couldn't breath feeling in chest thing that lasted about 40 minutes. My memeory has sucked as well. My relapses can last weeks or months. Also I have had a an episode of right sided whole body numbness/ tingling and a sharp shooting pain go up my spine. Got a migraine the next day. Also have had an episode of just right sided weakness with no headache and slurring speech. The ER said high blood pressure. My last one was in May and my doctor ordered me a MRI of the brain and found:
3 small white matter tract lesions seen on flair images of the subcortical white matter tract areas of the brain in both
hemispheres. 2 on the left and 1 on the right.
Conclusion: these could represent te changes of early demyelinating disease such as MS.
Had a normal spinal tap and a normal nerve conduction study.
Strokes run in my family at an early age. My grandma died of one. Could this be related to strokes/MS/migraines or heck something else? My neurologist is doing the waiting and seeing approach with another MRI in a couple of months. I'm so frustrated and ready to find out what's going on with my body. Any suggestions or comments would be appreciated! Thank you!!! :)

[Grandstaff]

Yes the "PA" did the exam and found right side was weaker. My balance was off too. It's only a matter of time before I go see a MS specialist. Thank you for your feedback. The best of luck to you!

[Grandstaff]

I so agree with you. I have an appt next month to see
if he takes me serious. I will be probably getting a referral
to a MS specialist. The best of luck to you!

[Grandstaff]

Thank you I agree! I'm so frustrated and feel alone.
I have seen two neurologist and both are quacks. I'm trying
to stay positive.
The best of luck to you!

[Grandstaff]

Thanks for your comment. I agree I know I need to see one
I'm giving my new neurologist one last appt and if I don't think
he is taking me serious then yes MS specialist here I come.
They see this young girl that "looks" healthy and I feel 80. Lol
My body is telling me something is way wrong.

[Grandstaff]

Thank you for your kind words! :)

[Katya4]

I agree with Jen

Too often, for many medical issues, doctors like to do what I call "Waiting for the engine to blow up before checking the oil".
I had a nurologist tell me they didn't know anything and since I could still walk in to the office there was nothing to be done, and to come back if I in future can not walk. Amoung much other erronious information. I think that aproach is absolutly absurd.

Whatever it is, it is a problem, and it needs to be solved now and not later, reguardless of its cause.

Best of luck!

[doublevision1]

Did your neurologist do a thorough neurological exam? eg: strength, sensation, coordination, walking speed, tandem walk, vision exam, reflexes, etc etc?

For demyelinating diseases to meet the criteria for a dx of MS, there must be dissemination in time and space. This means more than one part of the CNS affected at more than one time. Your clinical history of neurological relapses and MRI findings are suggestive of meeting this criteria. I would seek a second opinion. I agree that a wait and see approach is irresponsible when clearly something is going on, whether MS or something else.

[jensequitur]

I really think the wait and see approach is irresponsible. You could acquire more lesions while you're 'waiting and seeing.' Even if you aren't diagnosed with MS, you qualify as having a 'clinically isolated syndrome' which they've found can be treated with Copaxone to delay the onset of multiple sclerosis. The sooner you're treated, the less damage you'll have.

[kwarendorf]

Hi -

If you need a referral from your neurologist to see an MS specialist you should ask for one. If he/she does not give you one you need to find a new neurologist.

You should be evaluated by an MS specialist based on your symptoms and MRI findings.

Kyle

[immisceo]

I'm sorry you're having to deal with this. Hopefully I can at least help alleviate one of your concerns. As someone who had a seriously ill mother when I was a child, your kids will be fine. As long as you are honest with them and their needs are met, they are more resilient that you could ever imagine. Whatever their reality is, it's their normal. Trust me. Me playing with colouring books during my mother's chemo, I was none-the-wiser that this was unusual or 'brave'. It was just my childhood. That's how children parse it.

[Grandstaff]

Thank you for your feedback. I have tried to go see a MS specialist but they need a referral from my neuroligist. I will wait for now and see. Have a good evening.

[Grandstaff]

Thank you for the suggestions! Yes that was my next avenue to tackle was cardio. Good luck to you as well and have a good evening.

[HVAC]

Wait and see is what neurologists do with MS. They like to see changes for themselves. If your neurologist is not a MS Special you could find a MS Specialist. When you switch neurologists you often start at square one.

Many of the things you describe are typical of atypical migraines. Sometime you do not get headaches but neurological symptoms like vision changes or weakness.

It might be MS. I am no doctor.Most of us took years for a diagnosis. No test rules MS in or out. You can look up the McDonald criteria it explains how MS is diagnosed. It is complicated.

Alex

[aspen2]

Wait and see is a common approach with ms specialists; in the meantime, with your family history of stroke, I would suggest you be referred to a stroke or vascular specialist as well. There are a number of vascular ms mimics and, although MS is a slow train, vascular issues may not be.

The unknown is an unpleasant place to be living in -- I am very familiar with it.  I share the right-side weakness with you, and have also been to the ER with a suspect stroke that wasn't.  ER suggested ms :P.

Just know you are not alone, and make sure you and your gp/pcp pursue all rule-outs while your neuro sits back and "waits".