Another Limbo lander 😥

[WiltingRose]

This is my first ever post anywhere so please be gentle, lol. Just like the many other limbo'ers, I am waiting for answers. My journey started just over 2 years ago, five months after giving birth to my second child. It started with tingling in both hands.

I was positive it was Carpal tunnel. Nope. To date i have had 3 EMGs- all normal. 5 Lyme tests- including the Western Blot- negative. Lupus, Myathenias(?) Gravis- all negative. All vitamins were normal but Vitamin D was 25 so I take a supplement once a week. My first MRI had 2 lesions lesions frontal lobe. Six months later they were both gone but several others appeared, mostly in the Parietal lobe. It said something to the effect of demyelination caused by Lyme or Multiple Sclerosis. And suggested further testing.

I have so many symptoms I can't write them all. It seems every few weeks i get new ones. Two months ago i had horrible itching and wanted to cut it with a knife. My doctor gave me Prednisone and it stopped it. Last week I lost strength in both arms and couldn't pick up a cup and my doctor gave me Medrol this time. I feel great right now!! I want to hurry and do things before all these symptoms come back again. I would say Fatigue and burning pain in random places are my worst symptoms.

I've seen 4 Neurologist's, two were just plain clowns, and the other two didn't want to continue once my LP came back normal. My Rheumatologist says although I do have Fibromyalgia, she believes my problems lie in the CNS. She mentioned MS. Last month I saw a doctor for Neurapathy and was told I do not have it and that I have all the classic symptoms of MS. I see another Neurologist at the end of July. I just want to feel better. I have two small children that need their mom. Thanks for letting me get this off my chest.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[KoKo]

Hi WiltingRose

Welcome to MS World. Thanks for sharing your Limbo experience with us.

For two years you have been dealing with many symptoms and have no answers, even after having seen four neurologists, and after having several diagnostic tests.

And all of this while trying to be a Mom and care for your children. This has to be extremely frustrating and worrisome for you. You have my utmost respect and compassion.

I see another Neurologist at the end of July.

Hopefully this new neuro is very knowledgeable, and has much experience and expertise with many MS and Lyme patients. Something is causing your demyelinating lesions and symptoms.

I have two small children that need their mom. Thanks for letting me get this off my chest.

WiltingRose, please feel free to vent as much as you need to. We're here to be understanding and supportive, and share our experiences.

If you have any questions, just ask and we'll be glad to help, if we can.

Wishing you a Happy Mother's Day on Sunday, free of symptoms and feeling well.

Take Care

[Mamabug]

So sorry that you aren't getting answers. Hopefully this new neuro will be able to diagnose. If not, please consider consulting an MS Specialist. They specialize in diagnosing MS if it's there and ruling out MS if it's not. And, if it's not, they may be able to point you in the right direction.

[mathgirl24]

My story is very similar to yours. I'm still in limbo too. I do have an appointment with an MS specialist in June. So we will she what they say. Limbo is so very frustrating! It takes patience and learning to take it one day at a time. The worst is when you feel terrible and there is no explanation for why you feel that way. And on top of that, some doctors make you feel like it's all in your mind. Hang in there! I have 3 small children and I know how difficult it is on days when you are so tired you can barely stand up to also take care of them.

[WiltingRose]

• Thank you all so much for your kind words and advice. I've been reading posts on this site for over a year now and finally got the courage to tell my own story. It's just so sad that they all sound so much the same but yet very different. I forgot to mention that there is a possible lesion on my cervical spine near where I had ACDF surgery (disc fusion) last year. I have seen the neurosurgeon three times to make sure there is no compression causing these symptoms and he says there is not and even if it were they would not be causing all my symptoms. I so want it to be something simple. I live in PA and was told the closest MS specialist would be NYC. Any one know of anything closer? I have an appointment in Pittsburgh in July but I'm pretty sure he is not a specialist. Happy Mother's Day to you all as well, and hope everyone has a pain free and fatigue free day.

[Seasha]

Hi WiltingRose - welcome and thanks for telling us your story! I found these MS centers in PA and wondering if you know about them. Being MS centers, there must be specialist in each location.

https://www.pennmedicine.org/for-pat...iple-sclerosis

The Penn Comprehensive MS Center is made up of experienced, highly-trained clinicians, researchers and educators who are experts in the diagnosis and management of MS.

This program is a part of the top-ranked Penn Neurosciences and offers patients access to the latest research advancements in MS.

http://www.ms.pitt.edu/

The Multiple Sclerosis Care Center and MS Infusion Center at Magee-Womens Hospital of UPMC - Our mission is to maximize the health and function of people with Multiple Sclerosis (MS) and related disorders through multidisciplinary care, support, education and research. Our MS center was first developed in 1993 and has worked in partnership with the National MS Society

Hopefully, someone else will come by from PA and recommend an MS specialist there.
Good luck to you and take care

[Mamabug]

• ...I live in PA and was told the closest MS specialist would be NYC. Any one know of anything closer? I have an appointment in Pittsburgh in July but I'm pretty sure he is not a specialist. Happy Mother's Day to you all as well, and hope everyone has a pain free and fatigue free day.

If you're close to Pittsburgh, it does sound like a long way. I live in south central kansas and drive three hours one way for my appointments and I think it's worth it even though Wichita would only be half an hour. We just make a mini weekend out of it. My husband can use a sick day to drive me there.

But you might need to go quite a bit further. Hopefully, one if the options See mentioned will be closer.

I can't comment much on your medical issues. But I hope this neurologist is successful. Maybe your symptoms and clinical tests are just nit very conclusive. If they don't meet the McDonald criteria (google it if you haven't read them), it's hard to diagnose.

Happy mother's day to you too!

[KoKo]

WiltingRose

If you are in the Western PA area, the Cleveland Clinic Mellen Center for MS is one of the best in the country.

Take Care