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Oh poor Erika! My travel back was also painful...both flight + train huge delays. I should have been home 22:00 and arrived 1:30 !! The worst was to wait in the icy cold air (also over here in Italy again -1 degrees) at night for the train. Brrr...

Get yourself a treat + hope your body and brain will recover soon! I guess your heart will already be recovering after the many messages thinking about you and asking you if you were still alive! Mine recovered when got those huge hugs from my kids this morning!

Steffi

Zeureka wrote:Oh poor Erika! My travel back was also painful...both flight + train huge delays. I should have been home 22:00 and arrived 1:30 !! The worst was to wait in the icy cold air (also over here in Italy again -1 degrees) at night for the train. Brrr...

Get yourself a treat + hope your body and brain will recover soon! I guess your heart will already be recovering after the many messages thinking about you and asking you if you were still alive! Mine recovered when got those huge hugs from my kids this morning!

Steffi

Hi Steffi and everybody!
I was lucky with the train (almost 4 hours and also with the bus (also almost 4 hours).
I had very, very bad night! Do not sleep in room number 5 in Franz Josef Hotel as you hear all the noise from the main street - all the cars. I took 2 nd sleeping pill at midnight. The noise woke me up at 4 am. I was hungry and I just wanted to vomit. As there was no toilet on a bus I could not drink. Well, I just wanted to faint, I had very strong headache and cramps in some muscles. As I am still very weak it is physically simply too much for me. Even handbag is heavy for me so all muscles hurt me a lot. Now I only have light headache.

Important: I will only take 50 mg of Aspirin a day as I am not too big 169cm/ 56 kg.
It is a good I plan to go to check the iron in my brain.
As for iron chelators we talked about deferoxamine and phenanthroline ( both were mentioned more times on TIMS).
Steffi you heard the story from Dr. Simka that more patients after the liberation procedure and after the flu do not feel very good. I had a cold or a flu and it is right I feel little bit worse - but not worse than before the procedure. I started to feel better after the flu only 2 weeks ago. So I will see.
I have to mention my problem with side effects of Carbamazepin - it helps me against the central neuropathic pain in my right arm but it makes me feeling drunk even more and also dizzy. I will go to see my neuro tomorrow maybe she has some idea.
I still have headaches every day and the pills create my nausea.
My eye test was the same as before - no changes. Maybe you remember that I sometimes mention I see as bad as before procedure. So there is no change in my eye nerve.
But my right vein is as well as before and there is some blood low in my left vein after stenting - it is not as strong as in my right but better than nothink.
Erika

Hi Erika

I read your post with interest (as always) and beg to ask if your bed was flat in the hotel?

8 hours journey in sitting posture would undoubtedly have had an impact on your circulation. My question is were you sleeping flat again in the hotel?

I ask because you mentioned nausia and headaches returning along with muscular aches, cramps and pain.

This what I would expect to happen from a person reverting from an incline bed back to old postural habits.
You may find the posts on this thread interesting regarding posture causing paralysis.

Could anyone reading this please answer the question that relates to your own personal experience with posture.
http://www.thisisms.com/ftopict-9774.html

Andrew

Hi Erika,

Thank's for the uptate.

Sorry to you had a rough trip. Get plenty of rest and take care of yourself. Hope you feel betterreal soon.

The massage sounds like a great idea for both you and Steffi.

Be Well,
Steve

AndrewKFletcher wrote:Hi Erika

I read your post with interest (as always) and beg to ask if your bed was flat in the hotel?

8 hours journey in sitting posture would undoubtedly have had an impact on your circulation. My question is were you sleeping flat again in the hotel?

I ask because you mentioned nausia and headaches returning along with muscular aches, cramps and pain.

This what I would expect to happen from a person reverting from an incline bed back to old postural habits.
You may find the posts on this thread interesting regarding posture causing paralysis.

Could anyone reading this please answer the question that relates to your own personal experience with posture.
http://www.thisisms.com/ftopict-9774.html

Andrew

Good you ask. I wanted to post it in another thread but I will answer now.
I had backache on inclined bed. I decided to try it on flat bed in Katowice. After the first night I had only very little backache but only short in the morning. Not whole day like today - again on inclined bed. No headache in the morning. The second day - no backache at all whole day.
I tried it back at home on 10 cm but I woke up again like broken with backache - I still have backache - I feel it in the bones, not in the muscles.
So I have decided to go only on 5 cm which is nothing, I know.
I am scared my "good morning" headache will come back but I can not stand the backache whole day. I have enough problems anyway.
Well, this is my reality
Erika

Hmm, I'm still reflecting on that inclined bed...I'm travelling quite a lot for work so if interruption of inclination could bring me bad symptoms maybe I rather live with my light ones (I'm lucky they are manageable - have no pain, only constant needles in hand+feet/partly numbness in feet) + hope for long-term improvement with the procedure.

Erika, I hope you'll get better soon! But I'm sure you will after you got some rest. The Poland trip was certainly lovely, but also very stressful for you. And you helped me and others so much - I would not know how I would have coped without you!! And it was so nice that you gave me the chance to also meet Pepe, Maria and the hospital where interventions are done. It convinced me to wanting to come back.

Now take care of my daughter - poor girl has ear pain (otitis). That's also unbearable pain....

Un grande abbraccio da Steffi

Zeureka wrote:Hmm, I'm still reflecting on that inclined bed...I'm travelling quite a lot for work so if interruption of inclination could bring me bad symptoms maybe I rather live with my light ones (I'm lucky they are manageable - have no pain, only constant needles in hand+feet/partly numbness in feet) + hope for long-term improvement with the procedure.

Erika, I hope you'll get better soon! But I'm sure you will after you got some rest. The Poland trip was certainly lovely, but also very stressful for you. And you helped me and others so much - I would not know how I would have coped without you!! And it was so nice that you gave me the chance to also meet Pepe, Maria and the hospital where interventions are done. It convinced me to wanting to come back.

Now take care of my daughter - poor girl has ear pain (otitis). That's also unbearable pain....

Un grande abbraccio da Steffi

I am already better. The biggest problem for me was that I was not able to drink enough. The third day only 0,5 l of water in the morning.
The flat bed in Katowice helped my backache at least.
Many people want to talk to me and many of them call me. But I am able to have some rest.
Well, at least you saw the hospital and your future bed for one night
I am sorry for your daughter. It hurts like hell - I still remember it from my childhood.
Erika

Hi Erika,

It was a great moment to meet you and Steffi in the Hospital. It is good to hear that you are on the road to recovery.
María is doing well...althougt to be honest we can not report improvements...yet. Katowice is colder today than these past days.
Look after yourself. Best wishes!

As Steffi says: Un grande abbraccio...
Pepe.

Erika thanks for your reply

Your back ache may also have something to do with your mattress. Obtain a memory foam topper, these are inexpensive. Place a non slip fabric mat between topper and mattress and see if this sorts out the back ache.

Did you notice the mattress in the hotel?

Pepe wrote:Hi Erika,

It was a great moment to meet you and Steffi in the Hospital. It is good to hear that you are on the road to recovery.
María is doing well...althougt to be honest we can not report improvements...yet. Katowice is colder today than these past days.
Look after yourself. Best wishes!

As Steffi says: Un grande abbraccio...
Pepe.

Hi Pepe and Maria!
Yes it was very nice to meet you all.
It takes time - I mean all the improvements. You can feel better, then worse and again better. You do not notice all things...
I had a cold I still feel little bit worse but many things are still better.
I am organising the MRI-SWI of my iron deposits in brain in Slovakia now. I would like to get rid of the iron. This is long journey Pepe and MS is very complicated but as you say I am on the road of recovery.
I will maybe never be completely healthy but I have a big chance to get at least little bit better.
Erika

Hi Erika

I have followed all your posts with great interest and admiration. You are such an inspiration to everyone.

I am fortunate to be going to Katowice to be seen by Dr Simka this March. I am in the process of sorting out my flights and accommodation and hope to finalise this over the weekend. Initially, I was looking to book into the Qubus hotel, recommended by Mutley. However, this hotel does not have the dates that I need. For me it would be a last resort to have to use stairs. I will be using a manual wheelchair, which at a pinch could be manhandled over small steps.

I know that you now have some knowledge of this city and wondered if you had any views on the Centrum Novotel? It looks reasonably moderrn and boasts a lift and disabled access - somewhat lacking in personality. My question really relates to its location in relation to the tests and procedures. It is listed as in the city centre opposite the Silesian Museum. It is located here: http://www.expedia.co.uk/pub/agent.dll/ ... cation-map

It is perhaps a bit of an imposition to as you this question but I am just trying to minimise any booking errors.

Acol, can you ask Dr Simka to test your veins while you are horizontal, standing and laying with the head end of the bed elevated 15 cm's?

This would be very useful for Dr Simka and people on the forum.

Andrew

acol wrote: I know that you now have some knowledge of this city and wondered if you had any views on the Centrum Novotel? It looks reasonably moderrn and boasts a lift and disabled access - somewhat lacking in personality. My question really relates to its location in relation to the tests and procedures. It is listed as in the city centre opposite the Silesian Museum. It is located here: http://www.expedia.co.uk/pub/agent.dll/ ... cation-map

It is perhaps a bit of an imposition to as you this question but I am just trying to minimise any booking errors.

Oh dear acol!
I know only hospitals in Katowice and Zabrze and train station in Katowice.
I only had chance to be for a while with Ian and his sister in hotel Diament in a room.
They have a lift for sure but we went uptstairs walking so I am not sure if it is everything OK for a wheelchair.
They spoke English at the reception. I can only advice you to send an e-mail to some hotels and ask.
Then we only had chance to go for fast lunch with Steffi, Ian and his sister.
Ian is from England, he had his procedure on Wednesday.
Then I only remember Marta - new young reception girl from EuroMedic at Rolna 18, who is very nice and spoke English.
I am sorry I did not help you with this.
Erika

Thank you Erika for such a quick response. For such a short stay I am not so bothered about access issues as I would be if I was going on holiday. We will always be able to manage because I am taking a strong, resourceful helper with me as well as my wife. My query related more to the hotels proximity to the test locations - doppler/MRV and liberation. Perhaps I will have another look at the map and try to locate Hotel Franz Josef - which I know is opposite the medical centre.

acol wrote:Thank you Erika for such a quick response. For such a short stay I am not so bothered about access issues as I would be if I was going on holiday. We will always be able to manage because I am taking a strong, resourceful helper with me as well as my wife. My query related more to the hotels proximity to the test locations - doppler/MRV and liberation. Perhaps I will have another look at the map and try to locate Hotel Franz Josef - which I know is opposite the medical centre.

Hi,
the stairs are quite narrow in hotel Franz Josef. There are exactly 27 stairs.
I am not sure it is a good idea. It just took me little bit longer to walk the stairs up the day after the procedure. The groin was little bit painful so I only could go up with my left leg.
The hotel is very simple - they call it a boarding house in Polish.
It is true it is very close to the hospital and one night for one person costs only about 42 Euro.
If you choose it, make sure not to go to room number 5. I had it last time and it is the noisy room. Rooms number 1 and 8 are OK. Number 8 was my favourite because it had enough light in the bathroom. You know I like to do my hair and make-up properly moreover I see darker with my left eye anyway. There are only 5 Polish channels on TV. I was glad because I wanted to learn more Polish adn I understand a lot anyway.
MRV is in Zabrze. You must take a taxi anyway - it is another town. It is still very possible you will have Doppler in another hospital in Katowice at Rolna 18.

Erika