Has anyone with pmr/gca (or both) had to see a neurologist?

[pollymarierose]

I've been diagnosed with pmr/gca since January 2019. I have a rheumy and a gp and the next thing they want is an MRI and to see a Neurologist. Is this common? Also, along with pelvic girdle pain, I have trouble with balance. Does anyone else? It feels like walking on mattresses.

[Hidden]

I am afraid I don't know about neurologists but I recognise that mattress walk. Good description. I have used a crutch for years due to other mobility issues and pain and lack of balance is the main reason. PMR made it even worse but settling now to pre pmr balance.

[pollymarierose in reply to Hidden]

I'm sorry you have that problem as well, but glad to hear you're getting your balance back. It pains me for people who knew me as vibrant and active a year ago, all of a sudden see "this early 60's woman" walking like a baby learning to take its first steps.

Thank you and continue getting better! 🌷

[Hidden in reply to pollymarierose]

You will too.

[pollymarierose in reply to Hidden]

🤗

[PMRpro Ambassador]

Lots of people have balance problems - I did pre-pred. I still struggle a bit walking on uneven surfaces.

You are in the USA? I doubt you would see if neurologist in the UK without extremely good reason. They don't do much in the GCA realm.

[pollymarierose in reply to PMRpro]

Hi, PMRpro! First of all....how are you doing? I know you weren't doing so well recently. I live in the US. I have the symptoms of gca but also have a few extra ones, apparently. And then there was the vascular surgeons visual assessment when doing the arterial biopsy. It took twice as long to get an artery (2 hours) and then I almost had to go to surgery (theatre). He kept finding alot of inflamed arteries but they all ended up with fibrosis. I made a believer out of him about low markers though. He looked stunned afterward and said I definitely have an inflammatory disease. I have always been that one medical exception to doctors, specialists....

So, it does have me a bit concerned. I am relieved to know that a balance problem is not uncommon in pmr/gca people.

Thank you and take care of yourself. 🌷

[Hidden in reply to pollymarierose]

Did it feel good to educate him?👍

[PMRpro Ambassador in reply to pollymarierose]

The weather changed to day - and I feel a lot better! The PMR doesn't hurt as much in the sunshine

It will be interesting to see how your GCA+ progresses and what conclusions they come to.

[pollymarierose in reply to PMRpro]

I agree about the warmer weather and sunshine helping relieve some pain. I've always said that I need sunshine to grow. I just didn't know how right I would be! I'll keep you posted. Take care!

[Noosat in reply to PMRpro]

I too struggle somewhat. Sometimes I think I may make it worse by worrying about it, so I tell myself, "walk with purpose." as if there is nothing wrong with you,

[pollymarierose in reply to Noosat]

That's good advice! Thank you!

[CT-5012]

I too have the mattress walk, bit like a nine pint drunk!

[pollymarierose in reply to CT-5012]

I hear ya! 🤪 Thank you for answering. It's nice that I can get some idea of percentage of people who have the mattress walk. 😉

[pollymarierose in reply to CT-5012]

Believe it or not, I can relate to the nine point drunk walk. I haven't actually done a nine pint drunk before. 🤣

[Marilyn1959]

Hi. I think several of us have had MRIs at one stage or other and many have been referred to neurologists. Part of the reason for this, certainly in my case, is to make sure there is nothing new going on. Through a process of elimination my tingling hands and feet (neurology nerve conduction tests) as well as my numbness in pelvic area region (MRI scan) was deemed to be related to PMR symptoms.

As for 'the early 60s woman walking like a baby learning to walk', I think all of us with PMR can relate to that statement. I certainly can in my late fifties, though there is no age barrier for PMR. I like the comparison to the new born faun, since their legs splay in different directions and that is what it can feel like even with just our two legs!

It does get better though so hang on in there.

[pollymarierose in reply to Marilyn1959]

Thank you so much for the encouraging words, Marilyn. PMR/GCA is one of those precarious diseases that we go through alone-together. It feels so strange to be me this year. Completely different, but I need to check once in awhile to see if what I am going thru is common for this disease. It still surprises me almost everyday with something strange happening. I hope your managing it okay though. Take care! 🌷

[Joaclp]

Hi, I see a neurologist for lots of neurological symptoms that are thought to be separate from my PMR. No serious neuro disease and, yes, I walk as if on a mattress or in thick honey/molasses. Be as well as you can.

[pollymarierose in reply to Joaclp]

Thank you. You too!

[Brantuk]

I have GCA and I was sent to see a neurologist twice due to numb toes and feet. I have what they call peripheral neuropathy (which can occur in hands/fingers too) and is due to restricted blood supply to the nerves. Too much of that and the nerves get damaged - I have lost one main nerve in each leg at the latest examination.

The doc tells me it can take up to ten years to grow back if at all - vitamin supplement B6 helps repair nerve damage. My feet and legs still work as normal cos there are other similar nerve systems in the legs that take over - they just feel permanently numb. I also use a stick regularly due to the "matress walk" feeling (great analogy) and sometimes slight wooziness - but it depends if I'm having a good day or a not so good one. Hope that helps.

[pollymarierose in reply to Brantuk]

Thank you for replying. This has been helpful 🙂

[maria40]

I got the definitive diagnosis of GCA from a neurologist. He was more understanding and seemed better informed than my rheumatologist.

Your comment about balance is absolutely what I feel but hadn't defined. Walking on mattressess is spot on.

[pollymarierose in reply to maria40]

Thank you for responding to my question. It's nice to know I'm not alone (though I don't wish this on anyone). Also, it's crazy the hoops aka doctors we have to go through

to get all of these doctors to finally agree on a definitive diagnosis.

[stonecreek]

yes, I walk like i'm drunk. should use a cane but-- I always thought it was due to my eyes. Have two eyes diseases also.LOVE HAVING THIS PAGE TO GO TO FOR INFO. I AM LEARNING SO MUCH FROM ALL OF YOU. I KNOW NOW THAT I HAD THIS MANY YEARS BEFORE BEING DX. aBOUT 4 OR 5 TIMES A YEAR I WOULD JUST GET SICK! bE IN BED FOR 1 TO 3 DAYS. Almost certin this is what my mom lived with also, but never dx. She lived in pain etc.The Drs told her that it was all in her heard!

[pollymarierose in reply to stonecreek]

That's terrible about your mom suffering and there's nothing worse than being told it's all in our head! I think doctors say that instead of admitting we have them confused because we're not "text book". I went thru that 33 years ago with fibromyalgia. Now pmr/gca is relatively new and it takes a long time to get that answer we need. Also, I've heard from a couple of people in the last 4 months who have had more than one member of their family diagnosed with pmr/gca. Take care!

[SusanEleven]

I had a wobbly walk before my PMR. I walked like a drunk and randomly fell over! I thought the brakes on my car were failing because I’d be stopped at a light and thought my car was still moving.

My Doctor at the time helpfully said hmmm, let’s send you to neuro cause it could be brain tumor. Or it might be an inner ear problem. I said “I vote for ear!” So he sent me off for all kinds of ear/balance testing.

Turns out my right inner ear no longer works properly (permanent condition) and sends conflicting messages to my brain.

PMR gave me what someone in this group called the “polywobbles,” a term I now use regularly. I feel like I have more of a penguin walk but it’s not bad.

[pollymarierose in reply to SusanEleven]

I walk like a penguin too! I attribute that to pelvic girdle pain. But, I have the polywobbles too much and hope things can be made better. I like your descriptive terms! Take care, SusanEleven 🙂

[stonecreek]

How does GCR and PMR differ?

[PMRpro Ambassador in reply to stonecreek]

Primarily in the areas affected. I don't expect non-scientists to understand the text but Fig 1 in this paper shows that nicely:

academic.oup.com/rheumatolo...

Cranial GCA affects the head and maybe the neck, extra-cranial GCA the trunk and neck, PMR the upper limbs and shoulder/hip girdles. Table 1 shows the variation in symptoms.

They are believed to be basically the same disorder but quite how they are connected is not clear. Some research did look at whether the connection is in the tiny capillaries that supply the walls of the arteries but I don't know what the conclusion was.

[Whittlesey]

Yes. Neurologists are helpful