Well that was strange. A Rheumatologist rang me as per my letter and his first words were Mrs Anderson dear why am I ringing you 😳I told him I was also confused as my GP had referred me to a different Rheumatologist last March for a private consultation which was then cancelled because of Covid. He had no referral letter and no idea who had asked him to see me. At least we started from square one then. He told me that he had a letter on file from the Rheumatologist stating I had MCTD. I resisted the urge to tell him all about the diagnosis differences and concentrated instead on my “ funny turns”. He asked a lot of questions regarding frequency, duration, severity of symptoms and said I shoukd have another MRI as my last one was 2014. His opinion is , as the GP suspected, that I am having Hemiplegic Migraine. Treatment is not as simple as he feels Beta Blockers would exacerbate my asthma. He recommended Topiromate but I am reluctant to introduce yet more medication when these “ turns” tend to happen in bright light so he suggested 300 mg aspirin and Sumitripton. He will write to the Rheumatologist about my flares and feels he is the main Consultant for my conditions but he is happy to be involved in my care. He recommended strongly that I see the Optician quickly in case my conjunctivitis that is not clearing up is actually uveitis. He will ring me again in a few months. All in all quite a positive call then. Phew!!
Neurology Telephone Appointment: Well that was... - LUPUS UK
Neurology Telephone Appointment
Hi Cecily we wrote to each other a while ago. I have been diagnosed with hemaplegic migraines after being told that I was having TIA's. Mine come on for no reason but for sometimes up to a week before having a funny turn I can't remember names and places that I know well and also my short term memory is really bad. When these happen my face will drop and my speech is slurred, it's just like having a stroke. I hope you stay well regards Carole Judge
Hi Carole yes I remember . What medication are you on for it? How often do you have them? I am not having that many at the moment in terms of left sided weakness but I have having increasingly frequent auras and flashing lights and my head feels constantly as if there is someone pushing my head into my shoulders. I feel so sick of medication. I am sure that I am toxic lol I think I will better be informed as to the frequency of the turns when I am back out using shops etc xx
Glad you have had what sounds like very positive contact with a helpful consultant. I hope you get the recommended treatment quickly and that it helps you. Good luck and keep us posted on progress.🍀
Thank you so much xx
Cecily -
Sounds like a fruitful appointment. I am confused, though, as I thought it was a neurology consult. Not at all surprised that he ordered an MRI. I hope those new medications help your symptoms. I have similar neuro issues - they call them migraine variants. Medications do help. Do you have anti-phospholipid antibodies? Ask if he thinks this is contributing to your neuro symptoms.
I was going to tell you to see the optician but could see you were fed up. Glad he order it. I think opticians pick up on this stuff and send you to the ophthalmologist right away when there is concern. My cousin’s neuritis was caught this way.
So onward. Great job!
XK
Yes he was very pleasant even cracking jokes. He did listen to me and his questions were well placed to allow me to elaborate on my symptoms. The only thing I forgot to tell him about was the tremors both internal and external. I had it written down too gggrr. Yes I do have APS antibodies but I only take aspirin for it. I will have to go to the opticians. I was hoping to at least have a first vaccine before I went but the Chemist has to,d my husband that he is unwilling to sell us more over the counter treatment for what I think is Conjunctivitis as I have had four different types and have nearly finished the bottle and it just has not cleared it. At least he did not accuse me of hysteria or hypochondria which was my main fear. Hopefully his letter to the Rheumatologist will also prompt him to make contact .I told him that despite normal nerve conduction tests my finger tips and soles of my feet burn and when I touch my husband he jumps because they are very hot. He said that was not uncommon but the Rheumatologist is best placed to help me with these issues. How wonderful if he will. It gives me hope. Do you take the medication all the time for the migraine or before and during an attack? Xxx
That happens when we have first appointments or are in a bad phase. No need to worry. You can go over the tremors at follow up. He may want an EEG.
The pharmacist is right to not give you the medication. These eye issues are too serious. I understand your worry about Covid but the optician will be fully protected. I recommend a mask made in Israel - 95 - 99 percent effective in protecting the wearer. And you can breath in it. That is important with you asthmatics. Sonovia is the name. It is expensive but worth it, and it is washable.
People here can help with the burning feet. Lots of people seem to have this issue.
My head stuff is very weird. I never get a headache unless I have a procedure and can’t have coffee. 😅 I get nausea, feels like I need a vacuum cleaner for my head, rarely aura, rarely vision issues (words fall off page). I have had numbness and nausea - they aren’t sure if mini stroke or migraine. MRI is abnormal. Your hémiplégiac migraine is more serious. The neurologist will stay on top of it. He will start with abortive treatment and move to preventative if necessary. It may take a while. I take topomax, Effexor and low dose aspirin.
Neurologists take migraines very seriously. In the US at least they see them as life-altering illnesses and think GPs should be sending more patients to them because of under-treatment.
If you get nausea with migraine, under the tongue Réglan works for most people. Not me. But an IBS drug helps.
So glad you are getting treated. Of course, I was shocked when you described your symptoms that you hadn’t seen a neurologist a long time ago.
🍀🍀k
Thank you so much for that Kay. When I was first diagnosed with Lupus in 2009 my Rheumatologist was hopeless. I would go with questions, why is my balance so bad? Why are my fingers and feet burning? Why is my nose, lip and side of my face tingling? Why is my short term memory so poor suddenly! Why do I transpose numbers? Why do I forget the words for everyday things? His answer was always the same..well it is not Lupus. I obviously followed that with well what is it then? He began to get irritated with me and referred me to a Haematologist and Neurologist. The Haematologist was blunt but informative. He said there is no question that you have Lupus, we call it the great pretender and it is truly a horrible disease for which there is no cure but there are medications that can help you but you need a decent Rheumatologist 😳. The Neurologist was also very thorough and I underwent nerve conduction tests, MRI of spine and brain, lumbar puncture. She put me on 9x 300 mg Garbapentin daily and I just could not function. Nothing showed on the MRI and there were only a few white cells in my lumbar puncture so she felt that I was best supported by the Rheumatologist.Your symptoms sound frightening and unpleasant. I haven’t felt sick but I do get very giddy and disorientated as if I am drunk. My original “ funny turns” I put down to fatigue as invariably they happened when I was out. I have had to literally hang over a shopping trolley many times, been wheelchaired out of supermarkets on several occasions but I did not have the left sided weakness until last year. My headaches feel like a weight on top of my head then tingling down my face, bright zig zag colours and flashes and I feel very hung over for hours sometimes into the next day. I pooh poohed the migraine theory because I had a few migraines when I was young, related to menstrual issues and I literally could not pick my head up without severe pain and vomiting. We are such complex beings. I will definitely look for the face coverings thank you. You are a mine of information xxx
I have a great rheumatologist and it took about twenty years before he sent me to a neurologist. He called my symptoms “constitutional” and acknowledged migraine. But this area is really complicated, and the neurological aspect has gained a lot of attention. Frankly, rheumatologists have been wary of neurologists because they didn’t understand or help their patients unless they had the big stuff like cerebritis.
I think the neurologist will validate these symptoms. You do sound a lot like me! It is only recently that they have found through research that aPL even at low levels can affect the brain. Poor us having to feel like we were crazy, right?
A lot of the neurological issues will not show up on tests. There are no good studies to dictate treatment. He will use expert opinion and work with you, sort of trial and error. There is a very effective medication for serious migraines now. If these treatments don’t work he can get authorization for that. So don’t give up!
Yeah, the reason I know a lot is because, like you, I knew it wasn’t normal to look drunk when I hadn’t had any alcohol. I was ready to go to London to see Graham Hughes if my doctor didn’t get a handle on this.
I really think you are going to feel a lot better.
XK
Oh gosh I hope so. I am sick of being a moaning Minnie. It has wore me down recently feeling forgotten, hopefully things will improve now Take care of yourself Kayxxx
Now that sounds a reasonable bloke!! But then - I was worried the pink eyes could be uveitis - and that really would open up a door or so for diagnoses ...
Wouldn't it just. They do not look as bad as the images I have seen of uveitis but I do need to be seen, it is just worrying during Covid xx
Hello there, that sounds like a good call. Makes such a difference when someone listens. Hopefully your MRI appointment will come through soon. You take care of yourself. 🤗🤗
Thank you so much. You stay safe and as well as you can be too xxx
Sounds like things are moving in the right direction for you 😘
Let’s hope so xxx
Yaay well done CecilyParsley👍very positive indeed.😁 let's hope things start falling into place for you now & this is the start of things to come.
Good luck for your optician appointment. I had one a couple of weeks ago & was very nervous, but found they are taking everybody's safety very seriously & I'm sure you will find the same with yours..
& as others have said it is imperative you get your eyes checked out as soon as possible
😘
That is so reassuring to know. I know I have to do it so I will call them tomorrow xxx
So happy to read that you had a positive result 💕. Well done for staying strong 💪... go girl ! Hopefully some brighter days ahead xxx take care
Thank you so much. Stay safe and as well as possible lovely xxx
Hi CecilyParsley!
That's great news, I was in such a tizzy yesterday and off loaded so much I forgot about the connections with the migraines! I have never had migraines until I was diagnosed with Lupus and they are also are brought on by bright lights and photosensitivity; so that's really interesting. I'm so glad you've had a positive call and finally seems like you're getting somewhere with this after nearly a year 😊. Hope it goes well xxx
It is so easy to forget things as there is so much of it to remember. Thank you for your kindness. I sincerely hope that you get the help and support you need too xxx
So glad cecily that you had a more positive appointment for a change 🙏 I hope this helps and mri will be good to have 👍 I’m pleased you are moving forwards 🙏🤗x
Thank you so much. It has been a long time coming xxx
It sure has and it’s about time🙏 I hope it helps ease your anxieties too as it’s all so stressful in limbo 🤗
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