Afraid to hope

[Lori Lee]

It has been awhile since I have updated what is going on with my Limbo. There have been some changes this year and I guess I am sharing because I want to hear from others who may have similar issues.

I have been under the care of a MS specialist for 4 years. I had my initial episode in August of 2010 and at that time I had a black hole and several lesions with brain atrophy not normal for someone my age.

My symptoms are balance issues,my left side is weak and I have lost significant ability in my left leg, I rate a 2/5 in my large muscle groups of my upper leg. I have vibrations that run through my left leg. I have awful spasticity that causes my shoulder to freeze and my legs to be stiff. Recently I have started Baclofen with good results. I also have random muscle spasms that can be triggered by getting cold.

This January I started with a flair and had extreme fatigue and increase in symptoms. So my GP sent me back to MS specialist to see what had changed. I had just been in to see her and was fine and then a few days after my appt. I fell apart.

They repeated my MRI and my MS specialist has since quit seeing patients, she placed me with a NP who has been wonderful. She sent me for a new NCS/EMG and it was normal but the Dr who did this was very upset about my disability and said I needed to be worked up for MS with a new doctor. He was so kind he went to the NP that day and told her I needed to be referred.

So when I went in to see the NP last week she was awesome and is sending me to the MS center of Atlanta.

I am thankful for their compassion and I almost afraid to hope for answers after being in limbo so long.

The one thing that has me somewhat concerned is the new MRI showed and increase in atrophy since my last MRI almost 2 years ago.

Every Doctor I have seen thinks I have MS. Everything has been ruled out. The last visit I had with My MS doctor she said she thought Maybe MS and sent me for the MRI but I didn't see her again. Now to hope that a new Dr may have a fresh perspective.

If anyone else has atrophy and has seen a increase of symptoms that seem to correlate. I would love to hear from you.

Thanks for reading my post. I know it is long.

[msgijo]

Hi Lori.

IMHO NEVER give up hope. Some days it is all I have going for me .

Crappy that your neuro decided to 'bail' on you, but it does sound like a definite up-grade to be referred to an MS clinic. Good luck with the new Neuro.

Side note - my grandmothers people were from upstate SC. In fact my mom was born in Walhala(sp)?? I spent time with my grandparents visiting great aunts and uncles who lived around there. Happy memories .

[TinaP303]

huh?

Forgive me for being so confused, but huh?

Every Doctor I have seen thinks I have MS. Everything has been ruled out. The last visit I had with My MS doctor she said she thought Maybe MS and sent me for the MRI but I didn't see her again. Now to hope that a new Dr may have a fresh perspective.

They all think you have MS, so why are you still in Limbo? Why has no one formally given a diagnosis? All this seems so disjointed. I am SO sorry you're living through this. I most sincerely hope you get a definitive answer, quickly.

[jreagan70]

Another huh?

Hi Lori:

Here's the part that dropped my jaw:

I have been under the care of a MS specialist for 4 years. I had my initial episode in August of 2010 and at that time I had a black hole and several lesions with brain atrophy not normal for someone my age.

That plus new symptoms, and after 4 years all your neurologist could say about MS was "maybe"? And then she dumps you off on a NP? And the only doctor who doesn't think you have MS after all that is the MS specialist? Huh?

It's past time for you to see another neurologist.

I am... almost afraid to hope for answers after being in limbo so long.

No matter what happens, as long as you remember this:

This is the day the Lord has made I will rejoice in it!

...there won't be any room for fear. Rejoice and be hopeful and be glad.

[Lori Lee]

Thank you all for the responses. I realize I am not the most assertive person when it comes to advocating for myself. I am very thankful for the referral to the MS clinic.

On a side note I spent the end of last week in the hospital with a DVT. My GP thinks it is because I haven't felt well and I haven't been as active as I normally am. The DVT was in my weak leg. Grrr. Something else to overcome but I am very thankful that it wasn't worse.

msgijo- Walhalla is about 15 minutes from me. Beautiful area.

Lastly I will say the NP said I meet the criteria for CIS but I had never been told that before. So at this point I am very excited to see what happens in July.