Latest Update on Diagnosis

[Shadowrose45]

HI

Haven't been on in a while--everything looks so different!

I have learned a couple of new things since I was last here.

Whatever I have seems to be affecting my UMN, not LMN (assuming my dead arms are from trapped nerves)

Brain shows no plaques--so not sure if that rules out MS or not, really.

Still having spasticity, taking Baclofen for it, which is helping a lot. Doc has no real idea now what is going on. She doesn't think ALS anymore, since my LMN symptoms are not severe and are mostly in my upper body (face and arms)

I'm on 24/7 O2 now. Have a bi-pap (finally) Two tests she did show something auto-immune but she doesn't now what it could be--said I absolutely must see a Rheumy.

My B-12 is too low (as is Vit D). Apparently, I'm not metabolizing it properly or something. She thinks that might be the cause of the numbness and tingling neuropathy symptoms. So, have to start giving myself shots and get it rechecked in a few months. Same with Vit. D (pills, not shots for that one)

So--here I am--10 years later, still in limbo land with no real answers and worsening issues. I'm falling a lot. I mean a LOT. I don't leave the house without either my scooter or my walker with the seat. Mostly now, I'm falling at home, because my apt is too small to bring the scooter inside.

I realized I was 40 when I first joined Braintalk. I spent most of my time on the fibro forum--as I definitely have fibro. But--something else is going on. Just too many things don't fit fibro alone, and the doc agrees.

Something new is on my liver. Don't know if anyone but Barb will remember I had a tumor removed from my liver 7 years ago.

Lung CT was pretty good--but my pulmonary function is going down. No idea why--doc suspects weakened muscles. Will be rechecked when it's been long enough for insurance to pay for it to be tested again.

Does anyone know if a brain MRI needs contrast to show plaques? How likely is it to be MS with no plaques on MRI?

Oh--and I now have cellulitis in my legs--so the EMG was a tad abbreviated -- and I started bleeding which freaked the doc out. (I didn't stop the med--misunderstood her orders for the test) But she saw enough to know there are no ALS type changes in the LMN portions.

So--that leaves who knows what. UMN symptoms are caused by SOMETHING. Clonus, spasticity, positive babinski, hyper reflexes (mostly in legs) But no one seems to know what is causing what.

All docs agree my back issues aren't causing all the problems I'm having--though my spinal cord is being partially compressed by a disc in my neck.

So--how are those that Do remember who I am?

[SalpalSally]

Hi SR.:) So sorry about all of awful symptoms and pain. Iam glad that it is still not looking like ALS..that's great. Limbo is a carpy place to be and I hope you get some answers and the right meds soon.

In the meantime 2000 or more IUs of D3 could help you. It's good for the skin too. What is the Doc giving you for the Cellulitus? You have to be so careful of infections through the damaged skin..

Take care of yourself and I am praying for you..(((Hugs))):)

[Lady]

Hi Shadowrose,
I remember you, how long ago I couldn't say when, but I seem to remember your problems. Many of your problems could well be from the B-12 deficiency. Even the Vitamin D being low too. It seems to cause many of these symptoms. Just keep up the B-12 shots and Vit D pills and see how you feel.

B-12 made for under the tongue later in the day gives you a boost too. Many sports people do this before or during a game. If a portion of your liver was removed I can see why B-12 was probably not replenished. The liver stores two to three years worth of the B-12 you use everyday. You could test normal in the blood and still be lacking in the liver.


.

[Shadowrose45]

HI

No, a portion of my liver wasn't removed--just the tumor. I'm afraid it's grown back, as I have pretty bad URQ pain.

My biggest concern is the falling.

Lyrica is helping with the pins and needles in my hands--but not the cramps they get. Baclofen is helping with the leg spasms---but I'm still falling.

I still have to find a Rheumy to try and tag down whatever auto-immune thing I have.

My daughter is having a lot of problems now, too. She has major swelling in all her joints and hives from head to toe. They ordered a crap load of blood work on her, so hopefully, we'll get some answers. The Prednisone is helping with the hives at least.

I took the first B12 shot with no problems at all. The Vit. D, too. I haven't noticed any increase in energy, so don't know how long that takes.

My shoulder is acting up--i can't lift my left arm now. THey did a cortisone shot in the right shoulderblade area which is helping with that pain.

I've been cleared t have the surgery to fix my hand and neck--but am wanting to wait til I'm not so sick. My lungs aren't doing great and I don't do well with anesthetic (I don't tend to wake up well)

The Neuro wants to repeat all my EMG/NCV in 3 months to see if finxing my ulnar nerve helps with the weakness and abnormal portions of the EMG in my arms.

My question is this: Can MS be ruled out with clear brain and c-spine and L-spine MRIs? Last spinal tap I had years ago put me in the hospital in 10 days with a spinal headache and spasms in my legs.

Should I ask for evoked potentials? Does a rheumy or neuro test for MS diagnosing? The 'coming and going" with a lot of the leg issues makes me wonder--but in the last year, there's been no 'going' just constant coming and worsening stuff.

Hey Sally and Lady~! How are you two doing?

[Virginia]

Hi Shadowrose,

Sometimes an MRI of brain and cervical spine can be a real definite answer, and in my case was. I did go on for a lumbar puncture, but basically my Neurologist already knew. However, I also had many of the movements of a person with MS.

That having been said, I know that many people who have been on this forum have had clear MRIs and yet do have MS. I guess the leisons are just not showing up on the MRIs. I am not that well versed in this, but I do think that some MRI machines pick things up better than others, and also depending on where the leisons are they may show up better. Also depending on the size of the leisons they might pick up better. However, size of leisons is not always an indicator of how a person is doing with their MS. A very small one in the right location can do more harm than some big ones - just depends on location.

I hope all that was not too confusing. Someone will probably come along who can explain this much better.

It's hard not to know.

Good Luck:)
Virginia

[comancheflame]

You are so right, a clear MRI may just mean the lesion is tiny, but in a very receptive place, only time will tell. I am so sorry you are having such a hard time finding answers, both you and your daughter. We I was young, and first having problems (before MRI) I went to soooo.. many doctors, I was told I had Lupus, I was told I had rheumatoid arthritis. No positive tests for either. I was told tests don't always show what is going on. It is tough going through the diagnosis. My youngest daughter is also looking for answers. I don't think it is MS, she has fibro, slow thyroid, liver enzymes up. Now lumps under her rib cage, that swell, and then randomly go down. Doctors, say autoimmune, but have no real Idea. one possible diagnosis is durkoms(SP?) syndrome.

[Lady]

Hi Shadowrose,
You sure have a lot of symptoms, and in so many areas that do not correlate with each other, or one disease. Many could be more like a muscle-joint disease or MG. I think a Rheumy is the best way to go to rule out some of his specialties/disorders, before pursuing a Neuro for a nerve disease.

You could even have 'Mixed Connective Tissue Disease." That has many facets of symptoms. There are so many. I know you all want answers, you deserve them, but it takes time. I hope you daughter is okay. If she is itchy with the hives, Atarax is great for that.

Feel better and let us know how you are making out with your testing or surgery.


.

[newlyb12def]

Dear ShadowRose,

I'm so sorry that you are failing. You must be a very strong woman to have been able to bear all these symptoms for so long.

I'm glad that you've gotten your bi-pap, and especially happy that an ALS diagnosis is not likely!!!

I think it's a good thing that they've discovered that there is an auto-immune element... that could be very helpful in the search for a diagnosis. It's important to have a doctor(s) who can look at your symptoms as a whole (including the liver tumors) and still consider them separately. Have you been to one of the major/teaching hospitals?

The above posters are right... while it's not common to have MS without any spinal or brain lesions show up on MRI, it does happen. Some patients are diagnosed based on their neuro exams and histories. We've had a couple of people here get diagnosed after a long time in limbo because they have no lesions on MRI.

(((((ShadowRose)))))
I will say some good words for you. I wish you the best.
Kay