MS

Well..had a hearing test today...and I have 20% hearing loss in my right ear and have been fitted for a hearing aide.

I also mentioned how bad my balance is and the kind woman is speaking to an ENT for me and would like for me to been seen by the gentlemen. I explained all my symptoms to her and she asked has anyone given you their thoughts..I said my GP is not willing to comment, but my first thoughts are MS and she said I was going to suggest this to you...and this is the 4th person in the medical field to say this to me. She said by seeing this ENT that he can refer me for a MRI in order to rule out any issue with my ears. So this sounds like a side step to getting seen.

It's all a bit of a shock at the moment.
 

Oh gosh MeShell.  I'm sorry about the hearing loss. Hopefully the hearing aid will be very helpful though.

I personally wouldn't hestitate to go back to the GP and have a chat and explain what happened. 

Have you had other, worsening symptoms? If so, its all a case to go back to the GP. 

I know medicine is all a bit of a puzzle and you sometimes all the pieces go together slowly - but that at least if you can go back to the GP with everything,  the puzzle may go together a bit quicker.     

It can also help if you write everything down - you may not think a symptom is related, but sometimes it can be.  So at least write that down, plus any questions and that helps your appointments and you don't forget anything. (This has been such a key for me -I wrote a huge diary of all symptoms, timelines, pictures of where exactly I had been experiencing pain -I'm an engineer so I work in pictures;  family history, etc and gave it to the Rhuematologist. He really actually really appreciated it.)  I also keep a diary of anything new in between appointments. 

You did say above you've been referred to the general medicine unit though, does that include neurology?  Hopefully so - if not, definitley go back to the GP. 

Since you're in shock, it may be even more a reason to go back to your GP, part of their role is to reassure and provide answers, as well as diagnose. 
Be kind to yourself xx

Thanks PB 

I did have a an issue when we went to the NE of England the first of July..I had the tingling lip thing again and then the next day I could barely hold up my tiny travel blow dryer and kept having to dry my hair a bit at a time. When we got to York I had to hold onto David and my balance was so bad and ended up having a panic attack.

I am keeping a record of what is happening to me and hopefully this will help who ever I see.

Meshell, sorry to read of your worsening symptoms. I was diagnosed officially with MS in 2002 at the age of 24. I can give you the background on my what my symptoms were, but I'm sure you're aware that everyone with this disease is different.

My disease started with pretty heavy fatigue. I was in engineering school a the time, and I chalked it up to stress and studying long hours, but I would sleep 12+hours at a time and still not be able to get up. A couple of months after the fatigue started, I had a numb spot on the right side of my face. My primary care doctor figured it might be a virus that entered through a cold sore and attacked a  nerve in my face, so he gave me some meds. It did seem to get a little better, but around 3 weeks after that I had a very intense headache while at school. I still remember the pain of this headache; it was the worst one of my entire life. I think it was worse pain than a migraine. I managed to get home, and later that night the entire right side of my face had gone numb - from above my scalp to my neck, including my right lip and right side of my tongue. Honestly thought I was having a stroke. The next morning I called my doctor, and by that time I was having motor control and paralysis on the right side of my body. I couldn't hold a pencil or a fork, and my right leg would drag like I couldn't pick it up. I was running into walls, and my balance was out of whack. Long story short, I got in to see a neuro, who diagnosed me with probable MS. I got an MRI and a lumber puncture (those are fun), and the MRI confirmed lesions in my brain.

Since then, I've only had one serious exacerbation, which was last summer. Again my balance was off, I had some numbness in my right cheek/face, and this time one of my eyes wasn't acting correctly which contributed to the balance/vertigo. I was given some pretty heavy doses of prednisone (steroids), and all my symptoms cleared up over the course of about 3weeks. This was given to me while I was in the UK, but all my other medical experiences have been with US healthcare. Every couple of years, I've had an MRI, and what are called 'evoked potential' tests to see if there is further nerve signal degradation. So far my vision, hearing and sciatic nerves are still responding pretty normal to stimuli (knock wood). 

MS is definitely a very scary disease. Even though I've had it for 10+  years, I think there are still some days I still haven't come to terms with it. Some of that has to do with the fact that I am still 100% ambulatory, although I have noticed some fairly serious (at least to me) cognitive issues. So I can sometimes pretend I'm a normal person. However, I can no longer handle working as an engineer because of the stress, and the fact that my brain just cannot handle the critical thinking any longer. That's not entirely a bad thing, since I wasn't enjoying engineering anymore anyways!

There is hope for those of with MS. It's not the death knell it would have been 20+ years ago. There are therapies available, and other medical assistive devices that can extend viable years. In saying that, everyone's disease progression is different, so you really can't jump to any conclusions until you get to those bridges where you have to make adjustments in your life to accommodate for those things you can no longer do.

And there are other diseases out there that are very similar to MS. Please try not to jump to the worst case disease, until a specialist has that discussion with you. Sorry this is so long, I just wanted to share my story. And I'm sorry for typos and other misplaced words; that's actually one of the cognitive problems I have.  I hope your story ends with a diagnosis of something curable!

Thanks Bluegrass Lass

I am trying to keep from thinking it's this or that...but to try and wait and see. I am not sure if the symptoms are getting worse or if i am more aware of them now. I know my balance issue is definitely getting worse, like you I get up and run into things or try and go around a corner and hit a wall. Half the time I go around looking like I'm drunk. My memory or speaking and reading aloud is worse. I stumble over words constantly now. The worse bit is the memory I HAVE to be able to remember to do things my job is dependant on me doing things in order.

It's now gotten to wear every night my arms are asleep and I am not sleeping good because of it.

I am tired all the time!! Somedays I just want to cry cause I don't want to get out of bed and those are the days I can barely hold my blow dryer up or even have enough energy to walk out the front door.

Anyways thank you for sharing your story... I'll keep you all posted as things happen.

The worse bit is the memory I HAVE to be able to remember to do things my job is dependant on me doing things in order.

Would checklists help?  When I was in the military and had a fairly critical and complex job, we had checklists for every task to make sure we didn't miss a step.  Now when I have a multi-step process that has to be done in a specific order in my current job I write a checklist so I don't have to memorize 20 or 30 steps.  

Just a suggestion.  Whatever happens, I hope it all works out for you.

Oh, I completely understand the memory problems! I can have a conversation and 5minutes later not remember if we discussed xyz. I've taken to sometimes recording important meetings at work to help me remember what was said. And as camoscato mentioned, checklists for everything!

My cognitive issues really affect my speech skills. I have a lot of problems trying to remember the word I was trying to say, or when I type I wrong word - I can't tell how many times I have to proofread an email before I send it. I've had my fair share of bruised shoulders because of running into walls.

I'll be honest with you MeShell, it does sound like you are showing some 'classic' symptoms of MS, but there are other possible explanations for them. I don't know how it works in the UK, but could you go to your GP and request a round of prednisone steroid? When I was visiting the UK last year, before I received my visa, I had an attack. I managed to get in to see my OH's GP, who then gave me a referral to see a private neurologist. I had to pay an office visit to see him, but he gave me a physical exam and told me given my past, I was definitely having an attack. He wrote me a script for prednisone, which cleared up all my symptoms in a matter of a couple of weeks. The office visit was like £250, and I think the script was around £75. I don't know what your financial situation is, but could you swing a visit with a private neuro? But since I'm back in the US, I'm still not 100% sure how the whole NHS thing works (I was in Scotland btw) and don't know if you can get a neuro visit that quickly.

I don't know if a GP would write a script for steroids without a definitive diagnosis, but it seems pointless to make you wait for who knows how long, with all of these symptoms, if there is a medication that could alleviate them and get you back on the path to normal.

Oh, I completely understand the memory problems! I can have a conversation and 5minutes later not remember if we discussed xyz. I've taken to sometimes recording important meetings at work to help me remember what was said. And as camoscato mentioned, checklists for everything!

My cognitive issues really affect my speech skills. I have a lot of problems trying to remember the word I was trying to say, or when I type I wrong word - I can't tell how many times I have to proofread an email before I send it. I've had my fair share of bruised shoulders because of running into walls.

I'll be honest with you MeShell, it does sound like you are showing some 'classic' symptoms of MS, but there are other possible explanations for them. I don't know how it works in the UK, but could you go to your GP and request a round of prednisone steroid? When I was visiting the UK last year, before I received my visa, I had an attack. I managed to get in to see my OH's GP, who then gave me a referral to see a private neurologist. I had to pay an office visit to see him, but he gave me a physical exam and told me given my past, I was definitely having an attack. He wrote me a script for prednisone, which cleared up all my symptoms in a matter of a couple of weeks. The office visit was like £250, and I think the script was around £75. I don't know what your financial situation is, but could you swing a visit with a private neuro? But since I'm back in the US, I'm still not 100% sure how the whole NHS thing works (I was in Scotland btw) and don't know if you can get a neuro visit that quickly.

I don't know if a GP would write a script for steroids without a definitive diagnosis, but it seems pointless to make you wait for who knows how long, with all of these symptoms, if there is a medication that could alleviate them and get you back on the path to normal.

What you have just said is me...the words and everything.

I was in a meeting and said hello to one of the woman by name....made reference to her several times and getting to the last of the meeting I went to say something to her and I couldn't remember her name. I just looked at her and drew a blank...this happened to me last Christmas as well...I was helping out a friend in her shop and couldn't remember what half of £17.50 and couldn't remember how to use the calculator to figure it out as well!!!

At the moment I don't have the extra money to see a specialist..but the audiologist I saw the other day is looking into me seeing a ENT specialist for my balance...and hopefully she said he would refer me on to having a MRI...if the balance thing is an inner ear issue this might show it up but also it will show up hopefully signs of MS if this is indeed what is wrong.

Got a last minute appointment today with the GP and am going to see her. I am really tired today..and feeling a bit emotional.

It's been two months since I started this. I want an appointment with the specialist now.

Keeping my fingers crossed she can help you! 

I don't have any experience or advice to share, but I just wanted to send you big hugs, MeShell. xxx

I don't have any experience or advice to share, but I just wanted to send you big hugs, MeShell. xxx

I was going to say the same thing.  I sure hope your doctor will start to listen and you can get some answers.  Sometimes that is the best thing you can have, even if the answers are scary.  Keeping my fingers crossed that they will listen to you.

Thanks ladies...I went in and saw the GP and was asking about going private...she the audiologist I saw has sent a referral off to the ENT and hopefully will see them soon. But I also have a eye appointment on the 15th at the hospital and this person can also refer me on for a MRI..so she wasnt wanting to let me go private in case either of these will order a MRI. And save me several hundred £'s.....I suppose it's headed in the right direction...

 

Big hugs Meshell!

I am not around a lot but thinkingof you! huggs!