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Need some advice. Complicated health issues. Thanks

Hello,

I wonder if anyone can help me. My situation is quite complex.

I already have 3 autoimmune disease. Mixed connective tissue disease with a strong lupu overlap. Type 1 diabetes since I was 2 and hashimotos thyroiditis.

I also have been diagnosed with fibromyalgia. My diabetic control is not too bad.

I have been experiencing symtoms that have been much more noticable since reducing steroid mediaction. This has been done very graduly to avoid flares.

Twitching or tremoring, oins and needle. Head wobbling, neck feeling weak like it can t hold my head up, upset tummy and constipation. I have also had permanent weakness now in my lower right leg that has been ther for about two years. I also today and intermitently have facial weakness on one side but it does not significantly drop, terrible pain around eye sockets and stabing nerve pain around face. Not to mention the feeling that I cannot focus and concentrate and my legs feel restless at night… symtoms seem to be worse ehn I am very tired.

Mu rheumatologist thinks its caused by diabetes but my diabetic doctor thinks that it may be caused by my connective tissue disease. I don not have any other complication of diabetes as yet and have had it for over 30 yrs.

My problems is that I am loosing my faith in doctors to the point now that I been suffering with these symtoms on and off since my leg was affected and I feel like if I go directly and say that I am concerned about MS that they are going to dissmiss it. Even though my great grandfather and my great uncle both died of MS.

I know everyone is going to say just go to the doctor but I am finding this very very hard. It is hard having these other issues and all the confuaion between then all. Las time I waa sent to a nero about the head pains he said he did not know what I was dong here and that I had enough problems to be going on with. I swore then I would not go back to one.

I really a I a dilema and need advice.

Sorry for long post.

Hello to anyone who has taken the time to read this

I also missed out other symtoms such as

terrible tightness and pain around ribs

terrible burning pain in feet

nubness and tingling in hands

funny weakness in lower arms

frequent urination that does not correspond with diabetes

visual issues - feeling like you have to really focucs your vision to see properly. I have also had redness and itching of my eyes and they look inflamed. But again as it can be consistent with connective tissue disease. I have not gone to the doctor.

tinnitus

and more…

I really empathise with all those who have said they feel like they get a diagnosis of something and dispite worrying symtoms continuing thye seem to get ignored. Also GP s get very nervous about eting things wrong or lack of knowledge

I have also read posts from people with fibro who report all of these symptoms and it is very confusing.

Thanks

Cad

Hi Cad, My symptoms are very similar to many of yours and I have just been diagnosed with Migrain Auras, namely Dysphasic Aura and Hemilplegic Migraine. I hve never had what i thought of as a typical “migraine” and had no idea there were lots of different types. You facial/eye symptoms are just like mine, which apparantly is one of the key clues to the condition. I also have weakness and extrem fatigue and pins and needles in various parts of my body, and some speech difficulties at times, and constant extreme dizzyness. it really is worth getting checked out for this, there are Migraine specialists you can ask to see. Good luck xx

Hi Bunny the Cat,

thanks so much for your reply!!!

I am so sorry to hear that you have to put up with a condition like this. It must have been very frightening for you before you had a diagnosis. And now still.

I have just read a little about Dysphasic Aura and Hemilplegic Migraine as I did not know anything about. I did know about a few of the symptoms is Migraine with auras but this sounds quite disabling.

I can relate to some of the symptoms however not all of them. I definately have an open mind to anything including my fibromyalgia causing all this. I just keep having this nagging voice that keeps questioning myself. That is what the medical profession have done to me over the last few years!!!

I also know I am not helping myself really by not going to the docs either its just that although peopl think that until you are diagnosed you are treated like a hypochondriac, believe it or not the more diagnosis you have the more doctors treat you like that. As messed up as that is!!!

Thanks so much for your advice and support. I really hope things get better for you.xx

Hi, sorry you are feeling so under the weather. When was the last time you had your baseline bloods taken? when i say baseline, I am assuming you do have regular bloods for you thyroid/diabetes and possibly inflammatory markers??? I am wondering whether your GP routinely checks B12 etc too???

I know you said that everyone would say to go back to GP but i do think this may be the only option at the minute and if you usually see the same GP, is there an option to see another just for a fresh set of eyes and a second opinion? (I am in no way trying to say your regular GP is inadquate at all) but sometimes change is good or at least opens up other avenues of thinking.

It’s hard I think when someone with extensive existing medical history presents as one will always wonder whether the current conditions are causing issues but what I will say is, if you know that something is not right, then you have to go and tell them that (with all due respect on the GP’s part), they should take you at face value because you are the best judge of how YOU feel.

Good luck xxxxx

Hi Dingbat,

Thanks so much for reading!

I am on monthly bloods for FBC,LFT s and inflamatory markers. I also have my regular thyroid and diabetic monitoring done. These are ok.

The problem is, is that I dont think anyone really looks at them unless I go along to the surgery and my GP needs to refer to them.

My Inflamatory markers they are happy with as they are not going to get them any lower despite steroids , anti rejection drugs and disease modifiers. My CRP is still aound 20 most of the time. I have been battling with the steroids for about three yesr but am now down to a low dose.

My Gp doesn t check my B12 regularly but I am quite sure my rheumy would have done when was referred. They usually do. I had a load of testing done again. Heart, lung function, x rays, spinal MRI.

I did change my rhuemy care about a year ago to my local hospital as I was being seen at a national one but that has meant that I have been seen less frequently. I was actually due for revue in June but have heard nothing from the hospital and frankly can t be bothered to chase them up!!

Lupus is very weird as like MS mimicks other diseases and can have neurological manifetstations and that is exactly what I thought was going at first when the issue happened to my lower right leg. As it started when I started to reduce my steroids. I have only begun to suspect something else beacause of the types of symptoms and it seems like every time I google one of them MS is at the top of the list.

I think its a very good suggestion to try a new GP, I need someone who wants to help me get to the bottom of things. It is quite easy to see any doctor now at my surgery and I do know a couple of good female ones who might be understanding. I just feel like I have to lay myself on the line again. You are right though I should perhaps just try to request a B12 and say that I have been having some unusual symptoms. Its a starting point.

Thanks for your insite, sorry for rambling, its quite hard to be brief!!

All the best xxx

No need to thank me, I understand that its difficult to know what to do sometimes when you are not feeling well and yes, lupus is a weird disorder. Did you say you were under a neurologist?

Have they diagnosed what type of lupus you have? I’m sure you already know this but Neuro forms of lupus present very much as ms and have the same symtoms. You mentioned that your have had MRIs did they do just the spine or a brain MRI as well?

Hi Dingbat,

Sorry I have not replied before. Iam a Mum too and its been very tiring this weekend!!

I did see a neurologist about for years ago, actually that was before I had any more significant issues. I just had the terrible pain in and around my eyes and had the blurry vision where it s very hard to focus on something.

The neuro told me that he didn’t know what I was doing there, that I had enough to be going on with and that eye pain was probably caused by high doses of pain killers.

I came out crying and feeling awful. I did get my pain killers right down after that to minimise the side effects. I jus thought things were in my head. He used and MRI that was done a year before by my rheumy but said it was fine. That was along time ago now though and things have got worse.

Hi Karina,

I have mixed connective tissue disease which is an overlap of Systemic luous erythamatosus, polmyositis and scleroderma. My most significant symptoms are form lupus.

I am aware that lupus can have neurologocal manifestations, and I initially thought this was what was happening to me when I had a foot drop about two years ago. My doctor did not even think about this possibilty he jumped straight down the diabetes road without and testing of further investigation and the new rheumy I see has done the same thing.

The funny thing is that usually to incurr nerve damage from diabetes there would be other signs, perhaps some changes in circulation for example or consisitnat high bloods sugers causes other issues. I have not had any of these. In fact the opposite I have atacks of low blood suger and have been advised to let my blood sugers run slightly above normal.

This is why I feel like I am just bangin my head against a brick wall. No one will listen. A lot of the symptoms I have been having I have just kept to mysel and thought. I will just wait untill something really bad happens and then they can t ignore it.

I really do not want to be told either that there is a possibilty of something like MS either that much is true. I really do ahve enough going on.

Kind Regards

Cad

Sorry I had a brain MRI . I did have a lumber spine MRI 2 yrs ago but that was to check for spinal compression due to arthritis.It was clear I have not had any MRI done of the thoracic spine around my torso where the pain has been worse. The doctor just told me to try diazepam for a few days!!

Did the brain MRI show anything or was it some time ago? I ask because I was originally diagnosed as ms but now my neurologist and rheumatologist are thinking of the possibility of lupus with brain neurological involvement. I have had another brain MRI last week (which will be about my 6th brain MRI scan in 16 months) and I’ve got a spine MRI this week and then an appointment to see the rheumatologist an neurologist next week with hope that a more fixed diagnosis will be made and a treatment plan with DMD’s will be put in place. It’s quite common for ms and lupus to be diagnosed as one and then turn out to be the other and also sle lupus with neurological involvement is more and more common

I would explain to your GP that the rheumy says the symtoms are with the diabetes and the diabetes Dr says it is to do with the Lupus. AND as a result noone is excepting the problem and doing anything about it - PASS the buck so to speak. Ask if these could be purely neurological and nothing to do with lupus or daibetes. Afterall the rheumy says it is nothing to do with lupus and the other consultant says that it is nothing to do with diabetes.

I do honestly think that we have to fight for our own health at times.

Moyna x