Thanks Boudica,
I think iv read some of your post and iv never heard of your condition before, is it very rare?
Im feeling a little more relaxed today but still having heavy legs and numbness which is worse during the night.
Thanks Christine
1 Like
Hi nindancer,
Still in limbo but not feeling as fragile. I believe on of the problems with my scan was the spots are not in typical places for ms also my age,im 57.
Can i ask you if it was heavy legs that took you to the doctor first.
Thanks Christine
3 Likes
Hello again Christine, Iām glad that my message helped you, ivāe received a lot of support and help on this forum. In answer to your question about diagnosisā¦No unfortunately i donāt feel any nearer, but i feel much better emotionally than a year agoā¦I went through such a low patch and felt desperate for a diagnosisā¦believing that without one i was fake and thoughts like āperhaps it is all in my headā would cause me a lot of anguish. as i said before CBT helped me tremendously and allowed me to grieve for what i had lostā¦which in many ways i hadnāt been able to because i was waiting for a magic answer I really hope this helps, and i hope that you are able to get the support and help that you need.
Michelle x
1 Like
The funny thing was that there was no doctor involvement Christine. When I had a fall in town, I assumed it was down to an old injury but teaching pole every week meant I just booked an Osteopath as Iād had a couple of weird incidences before. She decided she was going to write to my GP as she said she felt an MRI was needed. So, I went to the spinal unit first, they agreed an MRI was essential and asked me a few things that confused me (did I pause before I peed?). It was when I called for the results that the panic started!
I was finding walking was getting weird and I now understand that my legs werenāt suddenly sensitive to the cold, it was spasticity. I was referred to neuro after a couple of weeks being unable to prise any answers from anyone. GP stepped in to speak to neurology team when I got put in lineā¦ a couple of weeks later I discovered the lesions on my spinal cord were indicative of MS and that journey started.
I was still teaching my pole classes about 3 weeks before diagnosis, I just had to verbally instruct a warm-up whilst doing squats to get myself warm! I could still!
Funny how things turn out. Please check my blog if you get a moment, I wrote how pole dancing saved me
Sonia x
2 Likes
Hi nindancer,
How do i get onto your blog, it might be obvious but im a bit slow on the uptake.
Christine
1 Like
No, that was me being silly actually, Twitter shows the link on my page
Sonia x
1 Like
Hi yƔll,
I have recently plucked up the courage to join the MS Soc after having a spell of āthis is not for me!ā I read with great interest the recent comments on the early struggles folks have in getting a firm diagnosIs. My neuro consultant has given me a āworking diagnosisā of PP MS. At least this gave me a hook to hang my many symptoms on so I am no longer in limbo. I really do appreciate and understand how folks feel when symptoms can be many, varied and not necessarily persistant. My advice would be - take someone supportive with you on appointments and keep pushing for a diagnosis. The relief I felt when given mine was so profound. I was and am now able to say to myself, āwe can deal with this now by taking one day at a timeā. The practical bits are easy to deal with on a day to day level. I donāt think of the future too much - you donāt know where this is going. With emotional support from family we can deal with the highs and lows. Itās hard at times feeling anxious, angry, tired, aching. Wooah! Writing this is not easy but, I am so relieved that Iām not alone with this.
Regards to all.
Morning Bonnie another early bird ilke me, I do most of my reading in the early morning. This is a great place to be especially if youāre feeling low or need to find an answer to the unanswerable.
Accept and move on is my motto whether itās health or one of lifeās other problems. It looks so easy when you read it.
Welcome and best wishes
Jan x
Hi Bonnie and welcome to the forum. It is very hard writing your first post, I remember spending hours writing and deleting before I clicked the āpostā button. Youāve done it though and it gets much easier.
Your outlook is very positive and realistic. As you have said, the symptoms can be very varied and at times bizarre but thereās a lot of friendly helpful people here who have experience and are usually happy to share their coping methods.
I hope you become a regular visitor, itās not a gang anyone wants to join but once you get the diagnosis, itās a very pleasant, supportive group to get to know.
Take care
Cath x
Hi Jan,
Thank you so much for your response to my post. Itās good to hear others ot there have found a way to deal with this condition. Early Birds on the same branch!
Regards, Anne
Hi Cath,
Itās good to hear from you too. Thank you for your positivity about my outlook. I like the that you speak about MS Forum being a āgangā - sounds cool.
Iāll probably drop in from time to time.
Regards,
Anne
Hi Bonnie
Welcome to our āgangā lots of lovely people here always willing to listen and offer advice where they can.
Hope to see you on the forum in the future, taking the first step is the hardest, and youāve done that, now it will be easier.
Pam x
Hi Christine,
Yup, thatās what Iāve got too. And heavy arms, and what my neurologist calls ātoneā in legs, arms and abdomen, ie. muscles that are in a constant state of contraction or partial contraction.
Itās **NOT **silly nor pathetic. And if anyone tells you it is, Iāll be having a word in their shell-like orifice myself.
I take Tai Chi lessons, but anything like that, such as yoga or Pilates will do. This increases āmindfulnessā. It helps the mind to control, or reconnect, with the body.
I practised for six months before anything happened, but it was worth waiting for when it did! Not only did it me feel better, but my instructor felt that his job was much more worthwhile. Double Whammy.
Anthony
1 Like
I wanna be in your gang too.
Anthony
P.S. Does it have a motto? I could design a logo. Any ideas? Anyone?
2 Likes
In 2009 A neurologist wrote, "
The short cut through all this mumbo jumbo is that he sent me off to talk to a psychiatrist. Over the course of fifty minutes we talked about this and that; I really canāt remember what, it was all really quite banal. Finally (my favourite word), he said āIām going to ask you some questions that might seem a bit strange, but Iād like you to answer them anywayā.
They were a list of things like: "(No?) and, (NOOOH!). Etc.
Eventually he asked me if I heard voices on the radio talking about me. At this point I snapped. I replied,
"Not often enough".
He said, āYouāre not depressed, you can go away nowā.
Bring me the Brain of Alfredo Garcia, (Neurologist).
Anthony
2 Likes
Thanks Anthony, when things are happening you think how can i possibly have so many changing symptoms. My heavy legs are getting worse, stairs have become a problem too.
Another odd symptom last night when i felt that water was running down my thigh, followed my stabbing pains in the same area today.
You have made my day saying im not silly or pathetic, thanks
1 Like
Go for it Anthony, if others too think this is an OK idea. Yo!
Anne
Hi Pam,
These heartfelt responses fair lift me. Iām sitting here as an āĆ©arly birdā again smiling to myself. First time in ages.
Thanks Pam.
Anne
Hi Chris,
That feeling of water running down the leg can actually be true. I was standing in the kitchen one day and I asked Gill ,"Have you just mopped the floor?
āNoā she replied. (Silly question really, Gill doesnāt do cleaning)
āIn that caseā, I said, āIāve just wet myself again.ā
Go on, laugh! You know you want too. Itās the only alternative to weeping.
A.
1 Like
And it happened again this morning. Iād forgotten to close the tap on my leg bag. The jokeās wearing a bit thin now.
2 Likes