More results, more confused as ever

[allium]

Hi all.   I afraid I need more expert advice for those who have been there.

It keeps getting worse as I go here; not only are my symptoms increasing and becoming more frightening, but each and every test is negative so far for what they "think" they are trying to prove I have (lupus, MS, Sjogren's).

The rheum visit again shows no pos. bloodwork (ANA 1:80).  He said, some arthritis in your neck and feet, and you have fibro.  No treatment other than exercise and go to PT.   Get a salivary gland scan done, and there is this thing called a lip biospy we can do for Sjogren's.  Neuro symp are rare in SjS.  Go back to the neuro.

Neuro said there are no MS type leisons on the MRIs of my brain (other white spots) or cervical spine, but I have lots of cervical spinal disease with bulging discs, bone spurs and disc deterioration.  His opinion; that it's not enough to be causing my tingling, numbness in my right foot and hand (sometimes lft foot too), and increasing dysfunction of my right hand as well (constantly miss things, just not working right at all). Also not causing the cranial neuropathy I have, now not just with lip mouth and face numbness but taste dysfunction and continuing hearing problems. Said the only other thing he will do for me is a lumbar puncture for MS if I want it, but he didn't think I had it.   Go back to the rheum.

After that visit, I got a copy of the cervical MRI report.  It says:

"At C5-6 disc, moderate central disc extrusion/bony spur complex which severely compresses the anterior dural sac.
There is mild bulging of the annuli at the C4-5 and C6-7 discs.
At the C3-4 disc there is a moderate central and left paracentral disc protrusion-bony spur complex which compresses the dural sac and severely stenoses the left neural foreman."

Given all of this mess, I really can't believe that it's not possibly causing numbness and motor dysfunction in my extremities.  The cranial neuropathy I don't understand..  It seems I have some Sjogren's symptoms with mild to moderate dry eyes and mouth, joint pain, GERD and these strange neuropathies and motor symptoms.  IS this Sjogren's? I think I am early in developing it if it is. Or MS, without lesions?  Or WHAT?

Fibro I guess causes extremity tingling, but not paralysis or motor problems. And dryness, but I don't have the fatigue.  So, I'm not convinced at all I have it.

I know that the rheum will want a lip biopsy, which after reading through many posts here, I really want to avoid that.  I don't know if a biopsy will be positive, at least now. I'm guessing that this scan will be neg. as well.

I need these symptoms started to get dealt with and treated if they can be.  Will I have to go through these invasive (MS) and poss. permanently disabling (lip) tests, only to find out that it's all a crock?  I don't know what to do; go to major hospital like Hopkins or the Mayo clinic, where they might sort this out better than THESE guys?

Oh, cripes. Can someone please share their experiences and opinions about this stuff?  Thank you thank you thank you!
Sheila

[Dolly Dimples]

  Poor Shiela,  I do hope someone can come up with some ideas of just what is going on with you, it does seem to be more than just one complaint , certainly much more than I could even take a guess on,  altho' there does seem to be  some neuritis there, my husband has this in the feet and could cheerfully have them cut off at times, he is on Amitryptiline for it which he don't like to take as they make him very hazy , like a hang over.. My best wishes for you and prayers that you are soon rid of these gremlins.. Dolly

[allium]

Hello Dolly! 

Thanks for your input and kind thoughts.

I'm sorry to hear that your husband has these problems.  Did they try neurontin on him?  That's what I'm taking now.  I had a script for Amitrypteline, but didn't fill it because I hear it makes dryness worse. The neurontin is also called "moron-tin" by some; I hope it doesn't do that to me.  I'm goofy enough already.

With me, my pain is not (as yet) in the areas of the numbness and pins and needles, except some throat pain.  Mine is now my neck, back, hips, and rt knee.  And severe headaches sometimes.

Today the pain is a little better, the neuropathy worse.

[Pooh]

Sheila, it sounds like you are having a problem.  It brings back memories of when I was trying to find out what the heck was going on with myself.  I finally gave up after so many years of hearing it was all in my head, or the tests are all "negative" or my favorite "inconclusive".  Never have figured out what "inconclusive" means.  Either you have it or you don't. 

Anyway, when things got so bad I couldn hardly walk into the rheumatologist's office, the tests all came back "POSITIVE" in a big way.  What a relief.  However, it took me over 30 yrs to get it.  Don't let them push you around that long. 

Hang in there and keep pushing those doctor's to find out what is going on.  Don't let them push you off. 

Pooh

[allium]

Hey Pooh from PA.  You asked a while back if I lived in that state; I live near Rochester NY but have driven down rt 15 a number of times going to Maryland.  A beautiful drive.

You are right that I need to keep pushing, but it gets harder as I get worse.  I need to find a way to keep going, though.  There is no one that is going to do it for me. The neg testing seems so common with many here, but they are ill.

Pooh, I have read lots of your posts, and have wondered if you ever were tested for MS, given your severe neuropathy. I don't know if you see anything familiar in what is happening to me and what it was like for you when you first started getting sick. I think I remember that it's cause has not been defined by anyone for you either,
Sheila

[allium]

I just started a new thread in the Nervous system section that's more specific to my worsening symptoms regarding that.

If some of you would like to please share your experiences, thanks so much.
Sheila

[allium]

I just spoke to staff at rheum office; says that salivary scan is normal (as I thought it would be), and he won't discuss anything over the phone with me.  Told me I either have to wait another 6 weeks for my regular appt., go on the cancellation list to see him, or go to my PCP for any help.

What do I do here? Thanks everyone.

[Chana M]

Hi Sheila

Your story sounds very similar to mine, especially with the neurological symptoms and headaches.  I struggle to walk at all, mostly because (according to the neuro physio I see) my brain doesn't know where my right leg is!

I've come to the conclusion that neuros, rheumos etc have a list of conditions they expect to see, test for them, and then try to shoehorn us into one category or another.  A supportive/intelligent/good doctor will be interested when you don't 'fit', but a less confident one just thinks that you're the problem. 

I don't want to add to your list of possible conditions but have they considered central nervous system vasculitis as a cause for your headaches and neurological symptoms?  There's also apparently a lot of damage that migraines can do, but that doesn't show up on MRIs etc.  My neuro eventually told me that MRIs don't track everything, and even the Gallium scan I had can't find inflammation in the brain stem.  So their wonderful (and expensive) tests aren't infallible.

I've had years of uncertainty and looking back I think that was almost as difficult to cope with as my body going awol.  As I've begun to accept it - and it's just a process, I can't claim to be there yet! - life has settled somewhat.  Whatever 'name' you finally end up with for your condition, it's what your daily life is like that matters.

Chana x

[allium]

Chana, hi and thank you for taking time to respond.

It does sound that we are simular. The dysfunction of my right hand not only seems to be numbness and weakness, but a loss of "sense of place"; reaching for things and missing them, etc.  I guess this is another type of neuropathy on top of the rest.

Yes I have had some doctors now that think I'm the problem.  I haven't been able to prove myself in any of the tests given so far.

Sorry to say if someone has considered CNS vasculitis, they haven't told me, but I will through it into the pile of more research for myself.  Getting hard with the hand.  I also haven't heard of a Gallium scan.  I think the neuro has been pretty lazy waiting for the rheum do do something, and visa versa.  To think he wants me to wait almost two months while I am losing my functions...I don't know.

Chana, what treatments have you received, and do you think they were successful at all?
Sheila

[Collie]

allium

Your symptoms sound much like mine. I have generative disk disease with budging etc; I also have the numbness and tingling in my feet and hands; but the cat scans and MRI's are always normal. I also had plugs put in my eyes last year because my eyes felt like they had glass in them, and i cannot swallow without the help of some liquid. Now I find out I have asthma and GERD along with paralyzed vocal chords. All my tests come back neg, yet I continued to feel worse. My doc tried me on Methotrexate to see what would happen. I took one dose and the swelling was already going down. i have not lost weight but my clothes are fitting better because i am not so puffy.

May be you need to ask about another way to get a positive result.


Collie

[allium]

Hello Collie. 

Was giving you the methotrexate the way they finally decided you were ill?  I guess if it's spinal disease, that won't have any effect.  I'm glad that you are finally being helped!

Has it helped with the neuropathy as well?
Sheila



 

[Collie]

Sheila

Yes,using the methotrexate was how I was finely diagnosed; The doc and i did not expect any improvement, but there was a huge improvement. it did not get rid of all my symptoms, My throat still feels like it is on fire sometimes, and i still have some some GERD problems but, my skin has improved, esp that crusty, flaky, dry skin on the heels of my feet, and my hands are much improved. The neuropathy in my legs has not improved, and my hands seem to be slight worse, I keep dropping things lately.

Hopefully you will find an answer soon; never give up seeking for the answer to why you feel this way!!!

Collie

[Chana M]

Hi Sheila

You asked about what treatments I've received and whether they've been successful so far.  Until 8 weeks ago I was just being treated for pain, which is extensive in my legs - especially calves and ankles as well as agonising toe cramps - and arms - especially forearms, wrists but also upper arms at times, and painful hand locking.  I also have dreadful headaches.  After trying all sorts of combinations of pain relief I now use Diclofenac, Zomorph, Paracetemol, daily aspirin, low dose nortriptyline.  I'm still in constant pain but it's at a level that I can cope with.  Acupuncture also helps.  I also have regular sessions with a neuro physiotherapist to enable me to walk a little using a wheeled walking frame, and to use my arms and hands as well as I can.

This spring the neurologist I've seen for 2.5 years suggested shared care with the rheumatologist and I was happy about that, not only because the rheumo came up with a diagnosis but also because he sees me every 6 weeks rather than every 5 months ... and because he actually started some treatment.  Once the rheumatologist got involved 4 months ago things started moving, and the SjS diagnosis was made. (He used the expensive and sophisticated process of two pieces of blotting paper in my eyes! Followed up by blood tests, and the Gallium scan but no lip biopsy.)

8 weeks ago the rheumatologist started me on prednisolone (40 mg for 2 weeks, now 30 mg daily).  My daily nosebleeds now come 3 times a week, headaches have lessened in frequency and intensity, but the steroids have had no effect on my neurological symptoms.  2 weeks ago I started Plaquenil but I think it will be months before I know if it's making a difference.  Last Thursday the neuro started me on CellCept, ditto for expected results.  I'm trying to be positive and optimistic but the past couple of months have really been about adjusting to side effects. With CellCept you have to have weekly blood tests - yesterday the first blood test revealed that I'm anaemic (Hb 8.5) and also have an infection so I'm on a 10 day course of antibiotics.  I think the next 6 months will have to be devoted to resting and allowing the medications to do their work.  With luck I should be able to reduce the steroid dose as the other drugs are 'steroid savers'.

Until reading about it on the message boards I hadn't realised how treatments could be used as diagnostic tools in this way - maybe it's something your doctors could consider?  At least steroids might give you a boost.  The other treatments I've been given are probably too slow-working to be appropriate for diagnosis.  It's a long time to wait if they're not the right ones.  From what Collie says, it sounds as though Methotrexate could be helpful in your case.

I hope this is useful information!

Chana x

ps the Gallium scan was for inflammation - they inject you with radioactive stuff and then 2 days later do a full body scan.  It's very straightforward and much less stressful than MRIs or Lumbar punctures.

[allium]

Collie and Chana:

It's painful to read your posts, but I so appreciate the effort you have made to tell me your experiences.  It's a tremendous boost to help me figure this out.

It all just...stinks. For you and everyone else here. 

I'm sorry the the methotrexate is not helping your neuropathy, Collie.  I keep wondering what exactly this facet of disease is doing in autoimmune disorders; so many have it, but often it doesn't seem to connect to the inflammation process. I hope that early intervention may help me, if I can get it to happen.  What ever it is!

Chana, it seems to have taken so long to get you on the right path (perhaps for you too Collie), but I know you still have hope. 

The meds you have mentioned I know they could try, but I am getting a lot of foot dragging here with both drs.  It seems a crazy system; they hand out the designer drugs such as for cholesterol by the truckfull, but balk at giving someone something that might diagnose and treat a serious condition.  I have been reading about myleograms and lumbar punctures, suggested by the neuro.  The myleo is horribly painful and usually isn't used unless MRI is useless, or surgery is considered for treatment.  And he doesn't think I have MS; what the harry. Compared to steroids, the lesser side effects of this procedure.... Methinks the side effect is a wallet fattening for the doctors.

I know most of you believe me, but I wonder if these people do. 

Ahhh nutz.