Un diagnosed and multiple symptoms, different diagnosis
 

Hello all of you, I introduced my self earlier, this is my first post, I could not find a correct thread, so I opened a new one. Hope fpr some help, which I am sure all you good people can give me.
I have for a long time had all different symptoms, 2 - 3 years. Everything is getting worse and more severe.
I have been diagnosed with polyneuropathy, sensory motor. and small fiber neuropathy as well as autonomic neuropathy as was with the positive sweat test. I also have positive urodynamic test for neurogenic bladder, and must take meds for that( that is actually getting much worse lately, I should see my neurologist) I had gastric enptying test that diagnosed me with gastrophoresis. So we know there is autonomic neuropathy.
I had bad spasm and cramps of legs about 2 years ago, but it went away. Now it has come back, every day and night. The cramps and spasm is now also in my arms, hands, wrists, and fingers,

I have terrible parashesia of arms that eventually leaves them numb and weak. I have pins and needles, electrical current coming down arms.
I have balance problems, I have to hold on to furnitures sometimes around in my house. I stumble,but I have not fallen.

I have a special feeling inside my torso that I have been telling so many neurologists, and I have a feeling they do not know what I am talking about. And they end up saying I am am anxious. ( of course I will be after all of this!!)
The feeling is like this: It feel like a vibratory system all over. I can feel it inside, but it can not bee seen or felt by others, therefor doctors document in theyr noter " subjective" ----
When I sit in a chair or sofa, it feels as if there is an eartquake under, if feels like the chair is vibrating, and sometimes when I am just standing somewhere, I can feel the vibrations under my feet.
It get worse if I am realy tired.
I have had problems with words finding, and especially remembering names. But otherwise, I am fully psychological intact as they say. I can be pretty sharp and quick sometimes.
I used to get very fatigued, but that has greatly improved.

I have been diagnosed with vasculitis, and I am being treated with imunoisupressive drugs and periods of steroid.

I had a rel bad time a couple of months ago, and my rheumatologist put me on a Prednisone course. 40 mg x 3, 30 mg x 3 , then tapering down. After about 2 days I felt like a differen person, but by the time I tapered down to 30 I felt real bad again

The symptoms are severe neuropatic pain and parasthesia. So the doctor kept me on 30 mg daily foe anotheer 2 -3 weeks, and then taperning down. It has been about 6 8 weeks now, and I am almost finished tapering down I am down to 5 mg daily.
But I feel real baad. I have parasstesia of arms and legs, and I have now breathing problems, and tightness in chest.

Because I responded so well to the Steroid, make me realize that ther reslly is an inflamation going on in my body, and when it was stopped, sympotoms come back again

2 days ago, I went to a cardiologist, explained the chest tight ness. He said it is not cardiac related( which is good!!) But he did give me a small dose of Norvasc, just to try there could be micro vessels aroun heart that was , it is like acting as anti agina. but he said all my large vessels are good( I had a cardiac cath earlier).

I saw my pulmonologist a while ago ( but I did not have this tightnes then, so perhaps I should go back) My Ct of chest was ok except 2 small nodules that we are keeping an eyw on)


Let me explain the chest tightness: It feels like a squeeze front and back, sometimes a little upp, some times on the lower chest, but most of the time the whole chest and torso!!!!! and it seems to be always there. It gets worse in afternoon It squezesright under the clavicle, and right down to bottom of chest
Sometimes I can not talk too much, makes me short of breath

It could also be worsening of my vasculitis.

But I had a MRI of my head 2 years ago, and it stated I had lesions demyelinating that likks like MS.

So they have been doing repeat MRI, but no new lesions

I have finally talked my neurologist in to doing a spinal tap!!!Yeppee!! I am having it done first week of next month

Perhaps we can fing out what is going on?




Now, my question is..
Could all this be MS??? I am sick and tired of it allk. they can not find a diagnosis

Hi Synnove :). Yes, it could be MS. That's the short answer. Getting
a MS DX, for some, is not an easy or quick journey. The fact that
demyelinating lesions were found and confirmed on your brain MRI,
is certainly an indication of MS, but not total proof.

Have you seen a Neuro, who specializes in MS? This may be the
thing to do. Get yourself to a MS specialist/clinic. Maybe then
you can get your answer?

Keep us informed as to how you are doing and hang in here.:hug:

yes, Sally, my local neurologist sent me to a MS spcialist neurologist, some time ago. The both of them, agreed to reevaluate me every 6 months to a year or so. with repeat MRI of brain. I have had about 3, and no new lesions. I had beleaved that they had ruled out MS, so I did not think much about that for about a year. So many other issues has been going on in my neurological state. cerebral aneurysm, and vasculitis and severe neuropathy.
But they can not find the real reason for the neuropathy, so they call it ideopatic.

Not until now, I am bringing the subject of MS again, due to the fact I hav some night episodes, they think might be some kind of seizures, I am going to hav videomonitored EEG next week. I have migrane, and all this together, I have tought perhaps it is MS.
I actually saw this MS doctor twice. So I will wait to see, what the the spinal tap result is. Perhaps we can have it ruled out.

Thank you all for the time and effort of reading my post.

Hi Synnove

I remember you from the aneurysm forum, although that one isn't very active. I had an unruptured aneurysm clipped in 2004, but I was diagnosed with relapsing-remitting MS in 2001. My aneurysm was an incidental finding - thank goodness, because it was just about to blow.

Sorry that you are going through all of this, and I hope you get some answers soon.

Hugs

first of all welcome to this site!

I have severe spasticity as well as neuropathic pain. I also experience that vibrating feeling occasionally in different parts of my body. Feels like a tuning fork to me. It's all part of my wonderful MS journey.

I was on gabapentin (neurontin) for the neuropathic pain, but didn't like the side effects. I have permanent numbness in toes and fingertips, and occasionally it spreads but then retreats back to the permanent sites.

Balance issues, cog fog, bladder/bowel issues, pain, it's all quite a ride.

the lumbar puncture will not always give you additional info...mine didn't.
And make sure you drink lots of liquids before your procedure. Plan to lie flat the rest of the day, and drink hi caffeinated drinks afterwards, like Monster. Helps avoid the dreaded headache. Only get up for bathroom break and meals.

Keep us informed-and keep a symptom journal with dates of onset, as well as questions for your docs. Good luck...hope you get an answer...many of us were given different diagnoses before it was nailed down as MS. It's a disease of excluding others before they decide on MS...:hug:

First of all, I do not know if I have MS

to Lynn:
Thanks for your kind post. Yes, that was good luck for you that the aneurysm was notices incidentally, and therfor repaired before it ruptured.
I did not know you also had MS.
I feel a special conection to you. Not so many poeople have cerebral aneurysm and live to talk about it. I guess I just have that feeling due to the fact that I am a nurse, and see patients with ruptures and in ICU etc. My aneurysm was noticed incidental too, due to investigation of visual disturbance and migrane headache.
But any way, it seems like us people with neurological problems, have many issues.
I have had this terrible neuropathy getting worse over a year, last few months terrible.
Doctors have not quite pointed out the reason/cause of the polyneuropathy with parasthesia and autonomic neuropathy. They say it could be the vasculitis I have. But the medicine, is not helping.

To Debbie D:

Thank you so much for your kind reply.
Yes, what is troubling me a lot, is this vibrating feeling. This is the symptom so many doctors, mostly neurologists, have not understood when I explain. IS THERE ANOTER WAY OF explaining this to the doctors??
Even MS doctors, 2 off them, I have explained. Is this so unusual? To me it is scary, and getting more so due to the fact that doctors do not aknowlege it.
So now, I think the spinal tap will hopefully tell us more.

Thanks for your time

There are MANY of us who've experienced this symptom. All I can suggest is to google it or if there is a search engine on this website use it (I am cognitively challenged & can't figure out how to utilize features of site):(

DO NOT GIVE UP. No matter if it's MS or some other disorder, list your symptoms in a journal, check in to your body occasionally, and LIVE YOUR LIFE. Try your best to be your own advocate in the doc's office. Be an informed healthcare consumer.

When I was searching for a dx, I was obsessed with finding out what was going on.
There is often something going on...maybe MS, maybe not. Keep track of what's going on...then live as if it's your last day, with bliss and gratitude. I know that when we are feeling so bad it's difficult. But all of us can live life to it's fullest, even when we can't move and can only look around. Others who've been through He77 have taught me that we can make the best of even the worst situations, can learn something from it.

I am not lecturing...just kind of mirror-thinking. We all learn even as we post.

There are many in this world who are worse off than we, yet they make the best of what hand they're dealt. The challenge is to accept the hand and play it to the best of our ability. Sometimes we are successful, and sometimes we aren't. Doctors are well trained in their professions, but we know our bodies best and need to assert with physicians our input.

Keep us up to date as to what is going on and what the docs say...we all ahve experience on our side, which has taught me much here and given me such support in so many ways.

Great post Debbie.:)

Thank you so much Debbie.
Yes, I afree with you in all that you are saying.
We have to take care of ourselves, both physically and emotionally . We have to live our lives. I will just tell you one littlke thing in that connection:
My husband and I had been invited to a very special celebration overseas, some months ago, and we had been planning. I had planned that for sure, I would be feeling better, have a diagnosis and get medication to "fix me all up"by the time the event should take place.
But that did not happen, and I was feeling worse, and we had to cancel out.
But after that, I felt so bad emotionally, because I have been trying " to live every day to it's fullest", so I felt I had failed, and I felt I had failed my sister( whos's party celebration it was for)
So 2 months later, I booked a trip for 2 weeks. I went home to my "old country"
I spent every day with my beloved family and relatives., I went to all the places that are dear to me. I visited some dear cousin that are terminally sick( She was actually the reason that opened my eyes, and got me out of my miserable old selfpittying person, and I went on the big trip) When I heared about her, I dicided that I must go, and I felt I had to go soon as possible. This cousin has been close to me.
I went to the mountains, I went to the forest,
My doctor back here, had put me on a high dose steroid treatment, and I felt good. I had to be careful though, due to immunsuppresive state
So this two weeks did wonders for me.
And I have had my eyes opened. I enjoy every day, and I will not cancel any event due to my misserable health. I now can look foreward to have my sister coming for Christmas. And I am looking foreward to prepare for Christmas.

Debbie D., so I do agree with all you said
Thank you for your post and information and help I hope you enjoyed my little "story"

So you got the steroid treatment before you went on your trip?

I am so glad you did the trip though...I always berate myself for limiting the kind of life my husband is living due to my limitations. But, honestly, if he was the one with MS, I'd be right by his side too. I have to constantly remind myself that he chooses to be with me, and care for me, because he loves me.

So I am trying more to be more willing to go out, even when I don't feel well, and am forcing myself to look at my life in more positive ways. The symptoms get in the way, but as long as I can breathe, I'm going to do my best to do as much as I can, even if it means only sitting with my dog on my lap due to fatigue.

Thanks for sharing so much with us...I learned a lot from you!!:hug: