possible MS, is there any treatment?

[bagheesmom]

My Neuro suspects that I have MS and is sending me for a second opinion which I cant get into until September. The last week I have been so sick that I havent been able to work. Ended up in the ER last fri night and they did all the cardiac workup and checked for bloodclots in my lungs, all negative. My chest feels like its being squeezed or pressure with sharp pains, dizziness, my legs and arms feel really heavy. They gave me Ativan and of course sent me to see my PC. I have an appt with her for thursday, I called my Neuros office today to let them know what was going on and the nurse said she doesnt think they can treat me without a confirmed diagnosis. Seriously? I have to suffer through this with no help? Are there any treatments that can help until my Dx?

[Guitar_grrrl]

Even before you have a definite diagnosis of MS, there is no reason in the world your neuro can't help manage symptoms.

Baclofen, like Kelly said, is very helpful with spasms and spasticity.  Diazepam or Flexaril can be helpful, too.  I've had good luck with Acupuncture, and massage for spasms/spasticity.

Good Luck!
Lisa

[bagheesmom]

Thanks so much for all the sugestions. Really appreciate them :)
@kelly97 Yes Ive had an MRI done, it was brain and c-spine

[jenphilly]

I have a rollercoaster ride too for reaching final diagnosis.  But, in that time between, I did a ton of reading and 'experimented' with diet and supplements.   I kept a log of what I ate, where I went and what the weather was like.  Did not take long before we realized that gluten was not my friend.  

I also started on a supplement regimen which I take to this day.  My problem showed up June of last year and my diagnosis was not final until mid November.  In those 5 plus months, I made a bunch of changes including diet and the supplements and those alone made a huge difference.

I started on copaxone in January, but still am gluten and lactose free and still swear by my supplement regimen!

Try to keep positive thinking, do lots of homework, educate yourself, so that when you go for your second opinion, you know what to be prepared for.

Good luck!

Jen

[saucygrl]

I'm so sorry you're having to go through this.  It took quite a while after my diagnosis to get started on medication.  Acupuncture helped me to deal with some of my symptoms and I still go even though I am currently on a DMD.  (Disease modifying drug).  I find that and a healthy diet really help.  Gluten seems to make it worse, so you might try and see if that helps you. I'm also very heat intolerant so cool showers and baths make my symptoms a little more mild.  Hope these suggestions help until you can get in for an appointment.  Like Alex said, I would definitely call to see if you can get in if they have a cancellation.

Best wishes!
Chris

[HVAC]

I am very sorry you are in one of the worst places to be the place we call limbo. No one likes not having an answer and feeling dismissed. Neurologists are just very thorough and it sometimes comes off as dismissive. I thought they were jerks until I understood how they viewed my case. The way their brains work is it is not MS until they have all the evidence to say it is MS. For me this was 5  abnormal MRIs over time showing MS lesions, tons of blood work ruling every other disease out, abnormal evoked potential tests and  abnormal emg, a completely messed up neurological exam (reflexes, etc.) and an abnormal Lumbar Puncture.




The MS diagnosis can often take a long time. ERs are only places to stabilize people they do not diagnose or treat. It took me 8 months to see a MS Specialist. There is a shortage of MS Specialists. In our area which has many teaching hospitals we have a ratio of 2500 patients per MS Specialist so it takes awhile to get an appointment. Not all neurologists know that much about MS. Neurologists specialize. It took me two years of tests after my first MRI showed MS lesions and they said I probably had MS. I saw six Neurologists all but one saying I would be diagnosed with MS. Some MS Specialist will start treating right away if they think you have Clinically Isolated Syndrome and others wait. This is a complicated diagnosis. There is no test which rules MS in or out, They look at all kinds of illnesses because there are many that act like MS. The MS drugs can be hard to deal with so they like to get the diagnosis right. Neurologists often follow you over time. Plus the insurance companies will not allow the drugs which are expensive without a firm diagnosis so the neurologist's hands are tied. Everything has to go through insurance for approval and insurance companies are lose money on MS.

You can also call the Neurologist's receptionist and say you would be willng to take a last minute cancellation if they have one.

Alex

They can however start treating symptoms. I do not know what your symptoms are. I did not know this and suffered with symptoms needlessly. My GP does most of my care these days. I tell her what I am having trouble with and she

[anon07072023]

If you have a neuro already, have they sent you for an MRI, yet (spine & brain)?  I had to wait quite a while to get in to see my first neuro (I think it was 3 or 4 months).  I wasn't treated for anything in the meantime, but that doesn't mean that your PC won't help out with that for you.

If you are having an MS hug type of thing going on, then your PC can let you try Baclofen. It's for spasticity.  If you have an MS hug, then it would be from spasticity and perhaps lesions in your spine.  I'm not for sure what prescription drugs you could take for heaviness in your legs, but maybe the Baclofen would help with that, too.  I've gone to the ER a couple of times for that squeezing, pressure, tightness, pain in my chest. It's never my heart - always turns out to be the MS hug. However, you never know, so it's good to be safe, than sorry.

Good luck,
Kelly

[bagheesmom]

Were any of you treated for symptoms prior to your Dx? If so can you tell me how or what you were treated with so I have some ideas when I go see my PC this week