Another Update on my Undiagnosed GBS (sorry…long)

Thanks gals, I really appreciate your support and understanding.
I think I will try to remember to use the common sense God gave me, in view of my past experiences, plus the facts as they are outlined by so many GBS-CIDP patients on this forum.

Sometimes with these docs, it’s a case of “the blind leading the blind, and both shall fall into the ditch”.

As far as I understand it, it’s way too late after 2 1/3 years for any practical diagnostic benefit from spinal tap or MRI, since the elevated proteins which are usually seen at the spine during acute onset will by now be greatly diminished, and back where they belong growing my hair and fingernails. During the acute onset, my hair was falling out and my fingernails became deformed (still have some nail deformities, they keep occuring every relapse, and I can see it in my fingernails as they grow out again, the deformities timing right to date of the relapse. Also lose more hair these times. But these relapses are minor compared to the terrible suffering of the onset stage.

The Doc tested me this week with the little electric-shock needle-zapper, you know…the tiny device with the heated needle or electric-shock needle (I’m not sure); zapping me in about 50 places on my legs, feet, arms, etc. I didn’t feel them very strongly most of the time, but today I’ve got little sharp pains all over the place where I was zapped. Wouldn’t those zaps be harmful to the nerves under my skin that are presently trying to heal? That’s what I mean…now I have a big burst blood vessel on one foot, and I’m having a harder time walking today…
Doc also finger-pressed very hard on my swollen legs for a long time (so it seemed), causing me to scream in pain repeatedly…the people in the waiting room all stared at me when I came out of the office. 😮
Thank God that’s over.

I’ve got another bunch of blood tests to do; nothing but a waste of time, I’m sure, just like the others…I’m already so muscle-weak, also have been diagnosed with anaemia a couple of years back, but I take 1 pill of multivitamins/multiminerals every day for it, and try to improve my diet. Now I’m supposed to get weakened further by the fasting and blood-testing. Then again, it costs me money I can’t afford to spend in order to travel for the blood-tests, and to rebuild up my blood again with more groceries. And I sure don’t look forward to more allergy testing; last time 1993, all those red allergic spots just kept swelling and getting larger every day for about 2weeks, and I felt awful.
That’s going to impact on my work. Just how I’m supposed to cope with all this, I don’t know, and it only weakens me and burns up money that I need to hang onto right now. The other doc told me that he couldn’t help me, so that’s probably going to be the only outcome here too.

What would help me is a scooter, so I wouldn’t wear out my already overtaxed muscles, and then the pain would diminish too. But I’m just glad to have the medical walker with the seat, so I can walk where I need to go for my errands, and sit when tired. Wonder why this Doc said no to physiotherapy. I think it might help me a little, at least try to tone the muscles with some gentle stretches to deal with some of the deterioration and cramping.

Well to close off for now…I have trusted them in the past, and that turned out to be a disaster for me. And after that they gave me the silent treatment, and dealt with my concerns by being indifferent and disbelieving. I may end up talking to the neuro, but I don’t want to be talked into anything that would harm me further.

Yesterday also was a really trying day; I’d like to talk about it, but I felt so sad that I’ve tried just to forget it. Today I felt so burned-out and weary, but I had a bright spot. One of my little music students comes for an hour; and at one point asked me how much time was left in the lesson. I said 5 minutes, and got the reply….”awww….I wish it was 20 minutes”.
That really gave me a perk. So on this day anyway, my career has not yet ended.

Sending you all a hug that can’t possibly hurt those hypersensitive nerves:

(((((((( ))))))))

–Donna

Since the nerve testing with the electric hot needle, I’ve been in quite a bit of pain for 3 days. Lots of burning spots on my legs and feet, some on my hands, lots of little purple bruises. Can’t sleep at night because of the pain.
And I was doing so much better. Now I have to heal again.

I’m one of the few people on this forum who have had no medical intervention or drugs for the GBS symptoms. I have been healing naturally for 2 1/3 years, taking acetaminophen for the pain when it is too hard to cope.
The docs testing has damaged me again. Frying the skin nerves with burning hot needles. And now I have to live with it when it’s so hard to heal GBS, and takes so much time, so much pain…

….actually, I’m feeling quite ticked-off at the moment, because of this experience. Now I have to recover from the effects of the tests. 😡
And it isn’t as if I have healthy nerves to spare, or even damaged nerves to spare for testing which yields me no gain. Feet hurt too much to walk now.
Sometimes I just feel like an injured dog, and would like to crawl away to heal or die. And that’s just what I have been doing for 2 1/3 years, and they can’t let well enough alone.
And then they say I have to get over my fear. :rolleyes:
Well, why am I afraid? Because they injured me with their vaccine, and then treated me with indifference. And now they finally want to poke around on me. Telling me that it won’t harm me. Oh yeah???? I’ll be the judge of that!!!

PS: I feel ice-cold today, and can’t warm up. I guess ‘Grumpy’ better go take a nap.
Sorry, but I really need this place to talk out my feelings and thoughts.

Feet seem to be relapsing now; back to the constant painful tingling, icy cold.
Lots of foot and leg cramps again; some hand cramps. Chilled fingers, feels so painful again. Lots of low back pain, and chilled butt.
Have turned up the heat over and over again; wearing all the clothes I can; even in my Kamik felt pack boots outdoors, my feet are ice cold, and it’s only -4 degrees outside.
You could chill a case of beer on my feet. 😎 (not that I drink alcohol)

Hafta tell the NewDoc about this next time.

Today received notice from landlord. Big plans for major renovation in my unit.
Going to send Hydro personnel on Friday to test with ‘blower’ for air losses around windows and doors. Planning on a long list of very troublesome renos in my unit on all 3 floors, removing insulation, installing more insulation, removing toilet, installing new toilet. Want me to move all my major appliances (full freezer, washer, dryer) 4 feet away from the walls, move all my shelves, etc in basement 4 feet away from walls, climb up onto top bunk bed to move all items off so they can go up above trap-door into the attic to change insulation there too. Want to install fluorescent lighting.

Last time they did reno in bathroom, they removed moldy insulation and tiles, which filled my unit with mold, made me terribly ill, causing me to need to be rehoused for 3 weeks. Big mess when I got back; took a long time to get well.
Allergies and asthma and heart were affected that time. That was before GBS.

What am I going to do??? Can’t even use fluorescent lighting because my eyesight and skin is intolerant to it due to almost 20 years on corticosteroids.
The UV lighting causes immediate hives and skin rashes and darkening vision.
Can’t lift or move heavy furniture and appliances; can’t balance on ladder to move stuff off the bunkbed so they can access the attic. Can’t handle the insulation fibers, molds, dust, caulking compounds. It’s winter, and can’t even open the windows. The kitchen fan is not working to remove fumes.

And what about my employment? Can’t teach music with noise, dust, people and illness. What is the matter with these people? The forms state that they are going to save money with all of these energy-efficient measures because they want to help us low-income people in our low-income housing units, but I know that my health can’t take this. My heart and lungs and general health at this time just can’t deal with it.

Today I called the landlord, explained my health issues again, and asked for an exemption regarding the renovations.
For 13 years I’ve been an exemplary tenant here, but now all of a sudden they are raising the isssue of re-housing me. The truth is on my side, and I am fighting with everything I can think of to keep my unit, so I can hang on to what health I still have, and continue to earn my living. They know I will never qualify for a disability since I can still teach beginners music (5 students). I just want to stay put, and be left alone, and not impacted worse than ever by their dangerous and toxic renovations.

They’re holding off, for now. But sent the superintendent over this AM to snow-job me. Wouldn’t listen to a thing I said. I just kept repeating myself to him, till suddenly my highbloodpressure got the best of me, and I collapsed in a chair, shaking with violent tremors from head to toe and angina pain in my chest. He just ignored it and kept on talking. What a horrible ordeal; no honesty and integrity in these departments, just rush a project through for the funding they get, no regard for the well-being of the tenants.

Please pray for me, my friends.