[Jacquelyn]

Hi,
I have been fighting this neurological problem for 10 years now. I first noticed while working out with my husband that I would stumble. Little did I realize that I was about to go down a road that I never thought would happen to me. I have progressed from walking with a cane to a wheelchair when going out and a rollator in my home. I have fallen more times than I can count. One time ending up with a subdural hematoma, talk about fun, it was not. But to make matters even more of a challenge, I caught a very bad cold or virus about 3 years ago and over time have lost the ability to speak clearly. This condition is called dysarthria. I tell my husband it must be nice having a wife who can not speak. Through every thing a sense of humor is important. I try to get a good laugh every day. I also continue to work out. My husband had ballet bars installed in the basement and I use them to do squats, lunges, pushups, etc. I ride my stationary bike and lift weights. I am in charge of my body it is not in charge of me. Easier said then done I know.
So I say to everyone speak to your body tell it good things and be thankful for the things you can do.

[Kitty]

Hi Jacquelyn and welcome to NeuroTalk!

I live in Gwinnett County so we're neighbors! Glad to see someone local here!

I'm really sorry for all the struggles you've been through. It sounds like you have an amazing hubby and a great attitude.

There are lots of very supportive and knowledgeable folks here so please make yourself right at home and join in anywhere you'd like.

[Lady]

Hi Jacquelyn and Welcome. It sounds like you have been on a rollercoaster ride for 10 years. Many ups and downs. Yet, you still work-out and have a great outlook on your life. I'm glad you have a good supportive husband, who understands and helps you.

You can't speak at all now?.. or is it low like a whisper, or slower and harder to get the words out? Do you use sign language? Sorry to ask these questions, but I was curious how a virus did that to your vocal chords.

I wish you well and hope you join us. We love new people.
Nice to meet you.

[SallyC]

Welcome to NeuroTalk, Jacquelyn. I'm so glad you found us. It is comforting to talk to peeps having some of the same stinky symptoms..huh?

Come on in and join us anywhere. We are all here for each other.

[mackers758]

Hi,
I'm Steve and I live in the UK with my Partner and daughter. I feel slightly unsure as to whether I should be posting in the part of the forum, as I have yet to actually have a diagnosis. I understand that there are 100's of other DX that my symptoms may be from , but I just feel like I am showing the signs of MS. In 1994 I had was whilst serving in the army, I was diagnosed by MOD doctors as DDD and lumbar spondylosis. Over the years I've had epidurals and for the last 10 years i have had facet injections in L5 S1 every three months (just to take the edge off) I'm currently on lidnocaine plaster for the surface pain in my legs. Anyhow back to the proper stuff. A few years ago I started having more and more burning pain, blurred double vision, shaking and tremors over my whole body but worse from my ribs down, weakness of limbs and in the end was sent to A&E with supsected caudia equina. After numerous tests, MRI/CT EMG and nerve conduction tests nothing was found.
Since then I have had the constant burning pain, tremors, shaking, imbalance, twitching, the tightness of ribs and abdomen, short term memory has gone, no co-ordination, some feacal incontinence. However the last couple few months things have gotten worse, all the symptoms appear to be with me with full vengance and here to stay.
I still manage to work (in IT) but it is certainly having an impact.
The reason I've not had a diagnosis yet is possibly due to me moving to another part of the UK and now I have to start the whole painful process all over, to top it off my first appointment to see a neurosurgeon was cancelled at the last minute. At least I have started seeing a GP that is getting things moving. I had a series of blood tests and had a scan on my liver a couple of weeks ago. The GP has even toyed with the idea these symptoms could be related to my active service in the first Gulf War. I had googled this link and found that there's quite a bit of an increased link between the two.
Sorry for the long winded description, I'm just looking at all possiblities and was asking for your thoughts as to what I may have.
Many thanks

Steve

[Kitty]

Hi Steve and welcome to NeuroTalk. We have many members here who are in the "limbo" stage of things. It's hard not knowing what's causing such havoc within our bodies.

What have you been tested for? What's been ruled out? It's a frustrating process even with the best of doctors but having to start and stop like you've described would be difficult.

Can you seek another opinion on your own? Possibly go to a doctor that is not affiliated with the military? You'd probably have to pay for it out of your own pocket but sometimes getting a fresh perspective is helpful.

In any event, I'm glad you found this site and I think you'll find lots of helpful, supportive folks here that can relate to your situation.

[mackers758]

Hi Kitty, Thanks for the welcome. Sorry I should have mentioned that I'm no longer in the military and once you've left the army here, you're placed into our NHS along with everyone else. in 2009 I had the nerve conduction along with MRI, CT scan and blood test when I had this suspected EQ episode. There were some abnormalities with the conduction test and one of the blood results (cant remember which one)at that time.
Since then I have moved and it's a case of starting all over once more. The GP i'm seeing has done quite a few blood tests and said there was no vitamin difficiency, but my liver results were high. I've since then been sent for an ultrasound but have not had the results. As I'm typing this my right arm is cramping /tightening, abdomen is really being squeezed. Burning all over the cheek and eye on the right side of my face. I keep getting this "spider crawling over my head" sensation. My right thigh is visible twitching and my hands are shaking. My vision is blurred/ double. If I close my right eye, the vision in my left eye seems to be flicking from left to right really fast.
I've also got this tingling sensation in my private parts.
All this just while I'm sat here typing this.
Once again thanks for the welcome

[Kitty]

Steve, if you're not already doing this you might want to start a symptom journal. I found this very helpful when trying to recall when a certain symptom started or what it felt like.

Each day I'd jot down the date and whatever symptom I was having. After a while you can check to see if there are patterns or if something reoccurs frequently. I learned not to rely on my memory because that just didn't work!

It's also helpful when you see the doctor. They can look at your journal and get a better idea of the symptoms your presenting.

Many of the symptoms you're describing do sound alot like MS - especially the squeezing around the midsection. We call that the "hug". I've also had the creepy-crawlies that feel like a bug or something on your skin. Very unnerving! There are several threads on the MS forum about tremors and other symptom of MS. Unfortunately, many other conditions mimic MS so it's important that your doctor rule out things before diagnosing. This is what takes so long. Have you seen an neurologist that specializes in MS?

[mackers758]

Kitty, thanks for the advice about logging the symptoms. I already log the bad ones (normally 7 and above) on a free app for my iphone. I must say that logging the symptoms as they come and go was a real eye opener. I couldn't believe how much I was going through, until logging it made me think about it more. I'd normally just suffer then forget about it as the next symptom came and went. I should have actually seen a neurosurgeon yesterday however I received a phonecall late friday evening cancelling it.
Hopefully I wont have to wait too long for a new appointment.
Steve

[Kitty]

Steve, if I might suggest this......you could start your own thread in the MS forum and explain what you've told us here. You might get lots more responses from others going through the same thing you are. The others might have better suggestions than I do as to what you could do and what they have done in this same situation.

Keep coming here. It really does help to know there are others experiencing the same thing.