Progress

The original specialist wrote to an osteopath detailing results of MRI Scan etc.

The osteopath rang us last week, and my partner went for the first time today.

This Osteopath also works at the same private Hospital, BUT

We are going via his Private practice at a third of the cost !

Tick tick

Osteopath said his flexibility for his age is remarkable,

No Way have you got arthritis at all. (NHS diagnosed Arthritis)

Tick tick.

He believes that three sessions and excercises might help

In recovery, advised on B12 .. yes ... but not over do it.!

Tick Tick

Meeting the RIGHT people has restored my faith in that there are Specialists , and professional people willing to help.

Keep looking for that special person everybody, as they can turn your life around. (Dont believe everything your Doctors say, get a second opinion !)

[jade_s]

Well done, Sallyann, well done!! 😄😄 Very glad you lucked out with the specialist but I'm also sure it has to do with your hard work and perseverance. Wishing your partner continued good recovery!

I completely agree with getting multiple opinions and hunting around until you find a practioner willing to work with you.

[Hidden in reply to jade_s]

What I admire is that neither Specialist have exploited our finances in that they both have said if they can't help they will try and find a solution elsewhere.!

The Osteopath has said that if there is no progress after three sessions he will refer us back.!

[jade_s in reply to Hidden]

Wow, that's really something. Kudos to them!! May we all be fortunate enough to find such thoughtful practitioners.

[Hidden]

I’m so pleased for you Sallyanni what a great result you both deserve that and very well done to you for your drive you’ve worked hard to achieve this.xx

[Hidden in reply to Hidden]

I have been researching numerous websites and came across two ... a case of autoimmune hemolytic anemia.Covid jabs etc ... interesting reading.

One thing I had noticed was treatment with steriods and b12 injections. Was mentioned.

My partner had steriod injection by specialist in area affected on his spine, very little improvement, but once we increased his B12 (along with the steriod) improvements have been out standing.

Left to the NHS he would of deteriorated.....

It stated that if treatment not administered then most likely result in disablement and the use of wheelchair.

[deniseinmilden]

Oh, fab news! Well done in your persistence. Thank you for your updates - really encouraging.

I couldn't agree more!

In the late winter my GP spent about 25 minutes on the phone to me one evening talking through a couple of issues resulting from my malabsorption with me and was prepared to believe me. As a consequence he has given me free access to the antivirals I need at a strength that actually works. So I have finally got over the shingles I had for 18 months.

And now I have at last found a wonderful cardiologist and the difference is amazing. Now when my heart won't run I trust him and know he'll help me if I need him to so have the faith to just record it's nonsense and go to sleep to reset it. So far this has worked!

I feel better now than I have for years: because they have believed and supported me it's given me more faith in getting my extra EPI and hormone problems sorted recently too.

The daft thing is that I've been right about everything all along but they undermine your confidence so much it takes several sessions of going back and asking again, and again, before they give up, try what I asked for in the first place and finally get the desired outcome.

I guess we live and learn...

Good luck with the next stage!

[Hidden in reply to deniseinmilden]

I have learnt my lesson, and butting in on one occasion with the specialist demanding that he gets more than two months records from the surgery might have given him more insight. We are now on the right road thank god.

At least we can all come here and share our frustrations, even help each other. Sometimes you think you are alone in dealing with it all.

[deniseinmilden in reply to Hidden]

You certainly aren't alone - there are lots of us rooting for you! x

[Hidden in reply to deniseinmilden]

Well done Denise and long may you continue to progress I’m so pleased for you.xx

[deniseinmilden in reply to Hidden]

Thank you so much!

Best wishes to you too! xx

[helvella in reply to deniseinmilden]

So I have finally got over the shingles I had for 18 months.

It's about six months since I got shingles. And the main blistering took the expected time.

Now I have an ongoing postherpetic neuralgia.

Just want to check my understanding. Did you continue blistering for 18 months? Or did you have PHN and find high enough dose antivirals helped with that?

Please feel free to reply via PM (or not at all).

[deniseinmilden in reply to helvella]

Hiya!Great to hear from you.

I'm so pleased you are starting to get over it.

Fine on here!

I just kept getting recurrent outbreaks. If I took acyclovir at a high enough level (it took ages to get a dx because of covid and then even longer to persuade them that my guts really don't work and I need much higher doses to get anything into my system) I could get the blisters to heal and I felt slightly less dreadful, but soon after the course of tablets ran out it would all break out again. I had the additional problem that I have heart arrhythmias, including a heart block, and my heart hates having infections - which I get lots of because my immune system doesn't work well. So for ages I felt appalling. I live on my own, am self employed and unable to get benefits so I was really struggling.

I've persuaded my GP to support me with 800mg acyclovir every day and it is currently keeping it at bay and I feel much more well than I have done for years.

I've got a bit of nerve damage (and scarring) at the blister site, but thankfully it's a small patch and is gradually improving.

I hope you manage to find something that helps you soon. Can you try creams? Topical magnesium?

PS I'd love to hear more from you, or one of your TUK superstars, about iodine in multivitamin and mineral supplements - it was another thing I should have been more aware of, sorry. Multivitamin and mineral supplements are good in many circumstances but I am mindful of the exceptions and hadn't taken thyroid problems into account properly, sorry. I will be more careful in future. I'd love a bit more information if possible, please.

[Hidden in reply to deniseinmilden]

How on earth do you cope !With all your ailments, self employed and not being able to give in, and to keep going is just amazing.

If I could wave a magic wand your way I would !

[deniseinmilden in reply to Hidden]

You are such a darling and you do better than wave a magic wand with all you do, all your efforts, all the things you say!

As you know, we're all stronger than we think and sometimes you just dig deep and carry on as best you can!

I'm much more well now so am catching up with my finances a bit now - if not the vacuuming! 😂

Love to you too! xx

[helvella in reply to deniseinmilden]

I've given up on amitriptyline - had been on 35 milligrams and dropped slowly. The side effects were worse!

Currently using higher strength capsaicin cream - which really does help a lot. But is a damned nuisance. Everything I wear or sleep on gets covered in capsaicin and can leave a cloud of fine particles in the air.

Also taking regular B12 (oral - I can absorb).

My left shoulder is the area affected - luckily stopped below my ear. I'm sure that on the scale of shingles issues, it is mild. But it just won't allow itself to be forgotten.

[Rexz]

Sallann, Yes, Yes, Wonderful message to keep looking for that person/doctor/GP the one that can help! A quote from a Richard Bernstein as he survived Kindney Cancer "There was no serious pain at all. My advice is if something is wrong and they can't find it, don't give up looking. Trust your feelings about your own body."

I personally went through 14 doctors in 2020 before I finally found a doctor that truly was interested in helping and we went on this journey together. She did not know everything about PA and all the ramifications of that disease and Oh was had every symptom and malfunction you can think of. But she had no ego was not arrogant and really became my doctor and health coach. I would take her my research and we together would develop a plan to test and treat and test and treat. So yes keep searching until you find the answers no one knows our own body better than us.

[Hidden in reply to Rexz]

You are right, I also think that women GPs are usually more helpful, less ego and far less intimidating, willing to listen (and may I say it LEARN.)SO glad you are recovering .... everyone has to remember that this deficiency will not go away even when you are over the first hurdle you have to keep going to reach the next.

Best wishes and may your health continue to improve !

[Rexz]

Well, I do usually try and stay away from categorizing people like one sex is better than another. But in this case I have to give in. My experience is that woman make far superior doctors. But only if you find those that are not trying to fit into a male dominated mold...those can be very hard as they attempt to mimic their male counterparts. But I've found most woman doctors to be more sensitive, have more empathy, set there ego aside, are willing to learn, they listen and I think a very important and distinctive trait is they TALK!!! Yes, woman can talk an amazing trait, they communicate. My experience with male doctors, and again not all of them, is they just scribble notes make grunting noises and then scribble some more then hand you a prescription. So there, I'm a man and now I've not only violated my rule to not categorize but I've betrayed my own sex! LOL

[Hidden in reply to Rexz]

Men do have there uses too ! I can happily say that I am not sexist, racist but I do like to understand what it is like to be in somebody elses shoes and listen.

As for medication I have a carrier bag full of anti inflammatory tablets, co codamol, nerve tablets etc etc that have no use what's so ever ....... we also have B12 that costs £1.60 per shot doing the job far more effectively.

[Rexz]

HAHA, lately I've been trying to figure out my use!! This fricking, um can I say fricking? this fricking disease has thrown me for a loop!

I too have a box full of unused medications! They prescribe them to me I go home and always research them before I take them then invariable, with the exception of my Thyroid meds for Hash, I toss them into the box.

[Hidden in reply to Rexz]

Well I can say, you have been very useful to other members here !Just blogging your recovery and reassuring people recovery is possible gives them hope!

[Cherylclaire Forum Support]

Good to hear that two people who have worked really hard to find answers (not just for themselves, but others here too) are now finally reaping results.

There are good and caring GPs and consultants out there, people who will look and listen, and who will react supportively - but for them, their job has just become more difficult because the lack of patient/doctor contact affects them too.

I have never turned down any avenue for help, just in case it is the day when I meet someone who can tell me why and what to do. Or else confirm that I'm already doing the best I can.

Luckily for me, my GP has been working with me for years, trying for the same thing. Luckily for me, an ENT senior consultant encouraged me, when I was doubting whether I could get throught this - he told me that I must continue with every other day injections, to be persistent as it would take a very long time.

He was absolutely the one person I needed to speak to at that point in time.

Let's hope there are many others - and that you have a GP who will keep sending you out there. Missed opportunities otherwise.

[Narwhal10]

Hooray and thank goodness.

So pleased finally for you both in finding the right people and you are getting there. It has been a long expensive, emotional, hard battle but you’ve showed such strength and determination which gives others hope. Something we all need when dealing with this illness and being met with brick walls.