Author Topic: Where to start.  (Read 449 times)

DeadGirl75

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Where to start.
« on: October 08, 2018, 04:55:57 PM »
So, it's been a while since I've posted. I've started breaking out in hives that eventually blister. Not all blister but they are leaving dark marks. A friend thinks it's Mast Cell Activation Syndrome. It sucks. I don't see the rheumy until November. But I also have to have neck surgery. I have to have a disk removed. The numbness and pain I was feeling is due to that.

I haven't found any rhyme or reason that I'm breaking out in hives, just that it's not new and it's getting worse. Anyone else have this? TIA!
~Shelly

Don't look to the past, there's nothing new there for you.

irish

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Re: Where to start.
« Reply #1 on: October 08, 2018, 06:31:03 PM »
The dark spots may be of significance so make how to show the docs. Also, I had a spinal fusion last Nov. in C
4C5. I had the disk removed and a cadaver disk replaced it. Also have a titanium plate and 4 screw in my neck. It wasn't the worst surgery that I have had but recovery takes time. Good luck. Irish

DeadGirl75

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Re: Where to start.
« Reply #2 on: October 09, 2018, 10:47:23 PM »
Thanks Irish.

I've filled out SSI for my Sjogren's, anxiety, and arthritis.  I wish I could show you the MRI of my neck. My C3, 4 and 5 are whack. But 4 is the worst and they're taking it out and putting in a spacer and using titanium screws that hold it in place. I'm a bit terrified to have someone rummaging around in my neck. But I can't handle the pain.
~Shelly

Don't look to the past, there's nothing new there for you.

Carolina

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Re: Where to start.
« Reply #3 on: October 11, 2018, 05:50:55 AM »
Dear Shelly,

I have similar degeneration of my neck.

I know Irish had similar surgery, and found relief.

I keep wishing for relief, haven't scheduled surgery......chicken I guess!

Here an idea for your blisters:

https://www.merckmanuals.com/home/skin-disorders/blistering-diseases/dermatitis-herpetiformis

Hope life improves for you!

Regards, Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

DeadGirl75

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Re: Where to start.
« Reply #4 on: October 18, 2018, 05:28:32 AM »
Hi Elaine,

I haven't scheduled my surgery yet either. I plan to once my son is on a break with school. I hope you find relief. I'm on some muscle relaxers that seem to help. Skelaxin. That has been a lifesaver.

I read through that link. I'm not sure it's Celiac Disease. My hives do go away. I thought they were related to my menstrual cycle, but I get them randomly.

~Shelly

Don't look to the past, there's nothing new there for you.

irish

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Re: Where to start.
« Reply #5 on: October 19, 2018, 11:58:58 PM »
It is ok to be scared to a surgery. I think it is a little dangerous to not be scared. Surgery is not a normal thing to have done to us so a little fear is healthy I think. I know I thought that at my age I might not wake up when I had my spinal fusion.

I have to tell you that the anesthesia they use these days and the knowledge they have accumulated about giving anesthesia really does make surgery easier. Also, the surgical procedures and the titanium, etc really makes for a much better repair with much less side effects and pain than it did in the years past. Know that things will go better than you think they well. We always build up  fear and crazy things in our mind.

I never had neck pain or headaches but I had miserable arm pain and back pain...never connected any of it to my neck. My cord was compressed worse I expected when I saw the scans. I only had C3C4 dome with anew cadaver disk and the titanium plate with screws. It is working pretty well. The worst thing is when scanning the shelves at the grocery store I can't bend my neck far enough to look at the top shelf. Oh well, then I spend less money. Take care and good luck. irish

DeadGirl75

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Re: Where to start.
« Reply #6 on: October 29, 2018, 10:35:16 PM »
Thanks Irish.

I wish I knew how to show you my scans. Mine is C4, 5 and 6. I get numbness down my whole arm and the first neurologist that I saw tried to say it was carpal tunnel. *insert eye roll* My rheumy is the one that sent me for a second opinion. Now, I'm having issues with the nerves through my left shoulder blade.  Usually, it presents as fire ripping down my arm, I feel as if it's getting worse. I'm waiting until my aunt gets back in town and then I'm going to schedule it. I'm tired of torturing myself.
~Shelly

Don't look to the past, there's nothing new there for you.

Carolina

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Re: Where to start.
« Reply #7 on: October 30, 2018, 07:03:24 AM »
Hi dgirl:

Just another thought.  I do have horrific DDD (Degenerative Disc Disease) AND in the process of diagnosis, I found that I also have Carpal Tunnel.

So it's possible to have both. 

To find out what's what, you can have an EMG, Electromyography (EMG) is a diagnostic procedure to assess the health of muscles and the nerve cells that control them (motor neurons). ... Motor neurons transmit electrical signals that cause muscles to contract.

I had an EMG to determine if my DDD was causing significant nerve damage in my arms and hands.  If that were the case, surgery would be necessary to prevent permanent nerve damage.

I did NOT have nerve damage from my DDD, but carpal tunnel in both hands was also identified.

I did have carpal tunnel surgery on my left hand (where it was worst since I'm left handed) and it was simple, painless, outpatient and required no occupational therapy afterwards. 

Sometimes when I think I do know what is going on in my body, the answers are more complex than I realize.  Specialists exist for a very good reason and they often have a much greater vision of what is going on.

Because I have significant osteoarthritis and progressing neuropathy, I have several doctors, and fortunately I've found very well trained, experienced doctors to assist me.

I woke up this morning in very strong pain, as I always do, from my DDD.  Every morning I think, this is the day that I schedule surgery.  But pain alone isn't really a reason for that surgery, unless it is constant.  My pain is tolerable once I begin my day, so once again I a postponing another visit to my orthopedic surgeon.

And my doctor would order an MRI of my Cervical spine in order to determine whether or not surgery is truly indicated.  Sometimes I experience numbness of my right arm during the night, but changing positions usually solves that problem.

I've lived with this pain for so long, since 1988 if you can imagine.  And I've sought out and found some pain medications which give me relief, except in the early morning.

I wish you the best, dgirl.

Keep us posted.

Regards, Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

irish

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Re: Where to start.
« Reply #8 on: October 30, 2018, 04:26:59 PM »
I  had the pain down both arms and it is the medial nerve that runs up into the shoulder and down into the hands. The carpal tunnel and ulnar compression pain can come from the neck discs being compressed. So much of these nerves are closely related.

I also had the nerve compression test to check out the carpal tunnel and ulnar compression  and I had both in addition to the spinal compression at c4c5. I did not have much pain with my surgery. The surgeries on the spine are so much better than they used to be. Don't expect to have a lot of suffering as I just had to take Tylenol at times. YOu will have some pain as I did cause we can't expect to get through life without it. Pain makes us aware of how lucky we are when we have soe better health. Hang in there and good luck. Irish

DeadGirl75

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Re: Where to start.
« Reply #9 on: November 02, 2018, 12:12:44 AM »
Thanks Elaine and Irish.

The neurologist did an EEG and he was the one who ordered the MRI. He wanted to do nerve studies on my arms but said because of my weight that it wouldn't work. When I feel numbness and tingling, it usually involves my whole arm, that's also when my grip gets weak. Here is a link to my instagram, I've posted pictures of my scans. I am just so tired of always being in pain, tired or itching. Ugh.

https://www.instagram.com/p/Bpq0hPblWKW/
~Shelly

Don't look to the past, there's nothing new there for you.

Carolina

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Re: Where to start.
« Reply #10 on: November 02, 2018, 04:56:48 PM »
Dear dgirl,

I looked at your picture on instagram, and I realized once again that I can't see s..t on an X-ray or on an MRI.  The doctor is always pointing out the problem areas and I can't see a thing.

In 2017 I feel backwards on my bum and suffered a compression fracture in my lumbar spine.  I could 'almost' see it on the MRI.......just a little dented place in the top of the vertebra, like a dent on the top of a can.

The good thing was that it stayed stable and didn't collapse further. 

I am SO GLAD there are specialists who can see what's what. I can differentiate NOTHING when I look at the scans.

I hope you get the relief you need.

This was my cervical spine in 2013:

C2/3: Small central protrusion..

C3/4: Minimal to mild bilateral neural foraminal narrowing. Moderate
central extrusion..

C4/5: Decreased disc space height. Grade 1 retrolisthesis. Severe
right and moderately severe left neural foraminal narrowing. Moderate
superimposed right/right lateral osteophyte..

C5/6: Decreased disc space height. Minimal grade 1 retrolisthesis.
Moderately severe left and moderate right neural foraminal narrowing.
Moderate broad osteophyte/extrusion complex eccentric to the left..
Question minimal left ventral cord deformation.

C6/7: Decreased disc space height. Mild to moderate bilateral neural
foraminal narrowing. Mild broad protrusion/osteophyte complex
eccentric to the right..

I'm sure Irish will know what's what with my neck.

Looks like I'm eccentric to the left on C6 and C7.  I'm sure everything is moderately worse since 2013.  Time files when we're having fun!

Regards, Elaine
Female-76-CVID-pSJS-IC-PN-CAD-Osteoarthritis-COPD-SFN-IBS-Knee/Shoulder Degeneration-SIBO, Intertrigo,Act.Purpura-Anemia-Copper Def-Raynaud's-Meniere's-Hiatal Hernia-Achalasia-IVIG Gamunex-Medrol-Gabapentin-Atenolol-Pilocarpine-LDN-Nasonex-Lipitor-Estrogel-B-12-Iron-D-Mannose-NAC-Co-Q10-D3-FishOil

DeadGirl75

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Re: Where to start.
« Reply #11 on: November 02, 2018, 06:51:14 PM »
Oh, Elaine!

I am so sorry to hear of your spine issues. I totally feel like a wuss for complaining.  :-[ What are they going to do for you? Do they have you in pain management?

Do you have any tips that would help ease pain? I'm taking skelaxin, a muscle relaxer and tylenol 3. I am not in pain management as of yet, but I'm wondering if it's going to be the end result.
~Shelly

Don't look to the past, there's nothing new there for you.

irish

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Re: Where to start.
« Reply #12 on: November 03, 2018, 10:18:46 PM »
Caroliine, I know a compressed cord when I see it but that is about all. I had about 4 other diagnoses with my neck but darned if I could read through it all and remember it long enough to figure it out. As we age we sort of just sag here and there and everywhere. Hope you maintain where you are at or maybe even improve, which would be evennicer. Good luck. Irish