Neurologist report/hba1c result/oral surgery

[ally1]

A busy few days this past week.
I had a letter from the neurologist with a report from the MRI and nerve conductive tests.
Nothing wit nerve s in wrists and ankles. The MRI states showed rather unremarkable wear and tear changes on spine. I had to Google this and came up with nothing wrong.
Scan on head showed minor wear and tear changes. No idea what that means lol
He also did hba1c was borderline of blood sugar. To me this means almost perfect which he states, he is not entirely sure about this as he was going by my last tests and we're highish. He hasn't stated what the numbers were.
Then he goes onto saying diabetes is not entirely under control.
Next paragraph goes onto saying, no significant strutural underlying reasons for my symptoms. . He does say it's reassuring. Feel a bit perplex now as something has got to be wrong though am happy that nothing serious is wrong. But to me, having to use a walker all the time, dropping things because hands and arms are weak.
All the other blood tests came back normal.

Saw the oral surgeon on thursday. She did two biopsy in mouth. At the moment my mouth is very saw and painful because of stitches. However, she took swabs because in her words, I have never seen a mouth/tongue so dry. She did say diabetes meds, bipolar meds and gabapentin do have something to do with the dry mouth but not to the extent of it now. She is disgusted that my gp keeps saying it's because I snore. She and I both disagree. She has given me a gel to help moisten my tongue.

All in all, it's good that nothing serious showed up on scans but has now left me feeling that I am back at square one.
Because of the result of the scan, the neurologist doesn't want to see me again

 

[ally1]

Have been thinking tonight.
I have had enough of all what's been going on and still not got any proper answers. My mood has dropped dramatically and thinking sod the diabetes.
I am safe so don't need help xx

 

[kitedoc]

Hi @ally1, Just a thought. Obstructive sleep apnoea (OSA) is more common in T2Ds than the general population.
Not saying that snoring and dry mouth are always a sign of it but something to put to your GP? see www.ncbi.nlm.nih.com/pmc/articles/PMC3449487 Obstructive Sleep Apnoea and Diabetes: Is there a link?. Pamidi 2012
Without knowing what other tests you have had done I am not sure what else to comment on.
But I will say that a pet hate of mine is medical specialists who bounce patients back to the GP with a 'cheery' letter saying the patient's troubles are not in their area of speciality, like ticking the box to say the motor car does not have a auto-electrical problem, full stop.
Why not say that whilst the patient's troubles are not neurological (or the motor car has not auto-electrical problem to find) but have you thought about x, y or z? (the car transmission, the overall age of the car, the known past problems with cars of this type, how the driver feels about the car etc etc)
In other words why does the specialist (who whilst having further specialised in whatever, still underwent general medical training) try to give the GP (and patient) some ideas of what to look at next?
A past colleague of mine used to call the former type of specialists, Single Organ Doctors or SODS for short.
Please forgive the analogy with cars, but I hope it illustrates the point that some doctors just see us as a part or parts, not the whole,

 

[Brunneria]

Oh Ally, sorry it isn’t better news.

Must be very, very hard to stay positive.

So frustrating for you!

Please don’t give up. Can you try contacting your psych guy on Monday?
Then wait til after xmas and then get another appointment with your doc. Maybe you can get the blood test numbers from him, so you can make more sense of the letter.

And I really hope that your new stuff for the dry mouth works. That will make you feel much more comfortable. I hope.

 

[DCUKMod]

Have been thinking tonight.
I have had enough of all what's been going on and still not got any proper answers. My mood has dropped dramatically and thinking sod the diabetes.
I am safe so don't need help xx

Ally, when we have a disappointment like this; finding we're no further forward, it can take a while to get over it. I had an appointment about a year ago with a Rheumatologist, to investigate some odd symptoms - I was referred to her by a Consultant Endo. Frankly I had never seen such disinterest in a patient by anyone who still had a pulse. It took me a couple of months to get overr how angry I felt with her, and how disappointed I was to be no further forward.

Whilst it feels like we're no further forward when that sort of thing happens, we usually learn something.

For you, you learned there are no big red flags being waved about your nerves at this stage, which can only be a good thing. In your shoes, you need to see someone who can discuss these reports with you. Usually I'd suggest you start with your GP, but I can apprerciate that's not an attractive option for you.

I'll have a little think about it. When it happened to me, I had a quiet sulk for several days. I couldn't even really discuss it with my OH, such was the depth of the frustration and disappointment I felt.

Be kind to yourself Ally.

 

[Pipp]

Oh, ally, please don't be too downhearted. You have been inspirational in the way you have dealt with all you have had to contend with. I am sure you will come back again, stronger, and you won't give up on managing your diabetes, or other problems.
Hope things look better soon.

 

[ally1]

Oh Ally, sorry it isn’t better news.

Must be very, very hard to stay positive.

So frustrating for you!

Please don’t give up. Can you try contacting your psych guy on Monday?
Then wait til after xmas and then get another appointment with your doc. Maybe you can get the blood test numbers from him, so you can make more sense of the letter.

And I really hope that your new stuff for the dry mouth works. That will make you feel much more comfortable. I hope.

I will try and see my gp after Christmas

 

[ally1]

Oh, ally, please don't be too downhearted. You have been inspirational in the way you have dealt with all you have had to contend with. I am sure you will come back again, stronger, and you won't give up on managing your diabetes, or other problems.
Hope things look better soon.

Thank you
Its everything that has happened that has just got to me.
I am just feeling sorry for myself

 

[LisaLise]

I have a terrible dry mouth where I wake up choking in the night as my tongue is stuck to the roof of my mouth. A lip biopsy confirmed the auto immune disease Sjogrens. This also causes me extreme fatigue, muscle aches and pain/weakness in my hands as well as various other symptoms. May be worth looking into.

 

[Pipp]

Thank you
Its everything that has happened that has just got to me.
I am just feeling sorry for myself

I understand that ally. It is only natural that you should feel sorry for yourself after everything you have been through. The dry mouth must be so uncomfortable too.
I do hope the gel helps and that you get some relief. Treat yourself kindly and gently. Then come back the determined ally that we know you are.

 

[kitedoc]

Hi again @ally1. please look at mayoclinic.org - Obstructive Sleep Apneoa and see whether the signs and symptoms might fit.
I am not saying that this is the only possibility but it does seem to cover a lot of what is troubling you. And gives you something to discuss with your GP.
By all means also look up mayoclinic.org Sjorgen's disease so that you are full bottle on that too.
i will be important though to be clear with each condition and any others you look up that you be definite on what you are experiencing and what you are not experiencing.
It can be so easy to imagine your troubles are this or that cause and find you emphasise things that tend to slant towards what you think is the problem, rather than keeping things clear cut. It happens to us all. just be a straight-forward as you can and if your GP seems flummoxed or unwilling to order tests etc then drop in the "Could it be Sjorgens? Could it be sleep apnoea?
And even if you get the grumble " I suppose you found that on the internet" type talk, who cares.?
What matters is that your GP finds out for you what is causing your troubles, not who might have thought of it etc.
Never give up !!

 

[DCUKMod]

@ally1 - I totally agree with everything @Pipp said to you.

It's absolutely natural to feel down right now, but in reality (as I found out on the back of my own disappointment), as time passes, we tend to accept these diappointments as being another bump in the road.

Try to look at this as another step in the journey for you discovering what's going on for you, rather than the end of any given road.

Whilst nothing showed on that one test, you have health care professions onside with you, knowing there's something going on. So, in reality your next challenge to your Doctor is "What, or where next?"

Onwards and upwards Ally. You've so got it in you.

 

[ally1]

Ally, when we have a disappointment like this; finding we're no further forward, it can take a while to get over it. I had an appointment about a year ago with a Rheumatologist, to investigate some odd symptoms - I was referred to her by a Consultant Endo. Frankly I had never seen such disinterest in a patient by anyone who still had a pulse. It took me a couple of months to get overr how angry I felt with her, and how disappointed I was to be no further forward.

Whilst it feels like we're no further forward when that sort of thing happens, we usually learn something.

For you, you learned there are no big red flags being waved about your nerves at this stage, which can only be a good thing. In your shoes, you need to see someone who can discuss these reports with you. Usually I'd suggest you start with your GP, but I can apprerciate that's not an attractive option for you.

I'll have a little think about it. When it happened to me, I had a quiet sulk for several days. I couldn't even really discuss it with my OH, such was the depth of the frustration and disappointment I felt.

Be kind to yourself Ally.

I will be sent a follow up appointment with the neurologist sometime in February.
Am glad nothing is wrong with my spine or neck. Though to be honest, I have no reason why he wanted to check my spine as I clearly said to him that I don't have back or neck pain. I did think with the head scan, that they would be looking at my brain to see if there was anything wrong there that could be neurology.
Neuro did empire that just a follow up then discharged. That's why I said I feel that I am back at square one.
To be honest, I don't want to see my gp because he is a waste of space. Mood is blur

 

[ally1]

I have a terrible dry mouth where I wake up choking in the night as my tongue is stuck to the roof of my mouth. A lip biopsy confirmed the auto immune disease Sjogrens. This also causes me extreme fatigue, muscle aches and pain/weakness in my hands as well as various other symptoms. May be worth looking into.

That is interesting. Only difference with me, as the day goes on, my mouth dryness gets worse. Plus I have a constant hoarse voice which getting worse as the years go on

 

[ally1]

I understand that ally. It is only natural that you should feel sorry for yourself after everything you have been through. The dry mouth must be so uncomfortable too.
I do hope the gel helps and that you get some relief. Treat yourself kindly and gently. Then come back the determined ally that we know you are.

Thank you. I just feel so dam low.

 

[ally1]

Hi again @ally1. please look at mayoclinic.org - Obstructive Sleep Apneoa and see whether the signs and symptoms might fit.
I am not saying that this is the only possibility but it does seem to cover a lot of what is troubling you. And gives you something to discuss with your GP.
By all means also look up mayoclinic.org Sjorgen's disease so that you are full bottle on that too.
i will be important though to be clear with each condition and any others you look up that you be definite on what you are experiencing and what you are not experiencing.
It can be so easy to imagine your troubles are this or that cause and find you emphasise things that tend to slant towards what you think is the problem, rather than keeping things clear cut. It happens to us all. just be a straight-forward as you can and if your GP seems flummoxed or unwilling to order tests etc then drop in the "Could it be Sjorgens? Could it be sleep apnoea?
And even if you get the grumble " I suppose you found that on the internet" type talk, who cares.?
What matters is that your GP finds out for you what is causing your troubles, not who might have thought of it etc.
Never give up !!
View attachment 30184

I would say not the sleep apnoea purely because my hoarse throat and very dry mouth is always throughout the day

 

[ally1]

@ally1 - I totally agree with everything @Pipp said to you.

It's absolutely natural to feel down right now, but in reality (as I found out on the back of my own disappointment), as time passes, we tend to accept these diappointments as being another bump in the road.

Try to look at this as another step in the journey for you discovering what's going on for you, rather than the end of any given road.

Whilst nothing showed on that one test, you have health care professions onside with you, knowing there's something going on. So, in reality your next challenge to your Doctor is "What, or where next?"

Onwards and upwards Ally. You've so got it in you.

Thank you. I will and can get over this. It's just that I feel nobody in the health service really cares. Thanks to the forum where I can rant and rave

 

[DCUKMod]

@ally1 - My advice right now would be to just tough it out for a few days, afterr this set back, then you can have a good think about yourr next steps.

Ally, has your thyrroid been checked recently? I appreciate the symptoms for things like hypothyroidism is very long indeed, and thankfully not evereryone gets most or even some of them, but you might be interested to read down the list:

http://www.thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html

You know you can always come here for support - even if we may not be able to help too much on the specifics.

 

[Energize]

@ally1
Have you had your Vit B12 level checked? Metformin is a known medication to interfere somehow with the absorption of Vit B12, among other drugs. Unfortunately, many HCP know little re Vit B12, it's importance and how common deficiency is so you would need to ask your GP to include it in blood test. Also have folate checked too as it works with B12.

I was B12 deficient, although my GP refused to accept this, so I now self-inject (relatively cheap to buy) and feel so much better.

Check out this link for starters (NHS) but then check out other sites too as there are so many symptoms that can be caused by B12 deficiency as it affects every cell in the body. You don't necessarily have to have all the symptoms. Many of them are also similar to other issues, ie under-active thyroid and others but definitely worth checking out, in my opinion. Also, B12 isn't toxic if you have too much as water-soluble so there's no risk in that respect.

https://www.nhs.uk/conditions/vitamin-b12-or-folate-deficiency-anaemia/symptoms/

 

[kitedoc]

I would say not the sleep apnoea purely because my hoarse throat and very dry mouth is always throughout the day

Hi @ally1, From what i have read it could still be sleep apnoea as a cause. And the other thing that could make things worse might be some reflux ( mayoclinic.org - reflux oesophagitis.). Sometimes we end up having to use GPs as a means to an end - the end being finding out what is wrong with us. If we can find a better GP even better !!