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Chirley
Thu Aug 19, 2010, 03:55 AM
Hi,

Over the last couple of months I have developed an ataxia and bilateral leg weakness. I attended a neurologist who found I had abnormal reflexes in my arms and legs and sent me for an MRI brain and cervical spine. He told me the problem looked cerebellar.

I have been sent a copy of the report, but have not talked to the neuro about them yet.

Luckily the MRI brain not only found one but it was completely normal. The cervical spine on the other hand found central spinal cord stenosis at C5-6-7 with calcification/ossification of the posterior longitudinal ligament and disc bulges at the same levels.

There was also a comment that there was diffuse infiltration of the marrow at the the base of the skull and cervical verebrae.

I have 2 questions.

Has anybody ever undergone surgery while having MDS with severe red and white cell problems?

Any ideas on what the marrow infiltration might be?

I had my scheduled BMB today and should have had another RC transfusion but they couldn't find compatable blood at short notice due to antibodies so I'm having the transfusion on Saturday and start my next Vidaza cycle on Monday so I probably won't see the neuro doc again for a couple of weeks.

It's a waiting game for everything to do with MDS and now I have to wait for the neuro too. Frustrating.


I'm surprised they found a brain, when I'm really anaemic I'm sure it's missing.

Thanks in advance for any replies.

Marlene
Thu Aug 19, 2010, 07:57 AM
Great sense of humor...I too am glad they saw a brain on the MRI :).

Are you going to see your hematologist/oncologist since you are going to get another round of Vidaza? If so, I would ask them about the bone marrow infiltration and see if it's related to the MDS. Take your results with you when you go.

John had surgery when his platelets were 36K, HGB around 10 and ANC 1.8. He did very well with it. They transfused platelets just before and during surgery and then he got two units of red cells afterwards. However, his counts were probably higher than yours are now. And even though his count were low, his cells functioned very well.

Are you going to have surgery on your back?

Birgitta-A
Thu Aug 19, 2010, 12:01 PM
Hi Chirley,
Too bad that you have got this type of symptoms too!

I think Marlene is right when she tells you that we can have surgery with low counts but they have to be corrected in connection with the surgery.

I have not read anything about infiltrations in for example the spine in MDS patients only in other hematological diseases but your disease is very special so perhaps the infiltration is caused by your disease. If so the infiltration could decrease when you are treated with Vidaza.
Kind regards
Birgitta-A

Chirley
Thu Aug 19, 2010, 06:45 PM
Thanks for the replies Marlene and Birgtta.

My BMB was done by my haematologist yesterday and I didn't have the MRI results at the time, they came later in the afternoon. I did tell him about my symptoms and about the neuros findings and he was concerned that I was having a Vidaza side effect. He explained that even though it wasn't listed as one of the possible side effects, that sometimes the drug company is still aware of other problems that have been reported but couldn't be proven to be associated with the drug. He said he was going to ring Celgene and talk with them. If this ataxia has been reported before he was going to stop the Vidaza.

If the problem turns out to be from my neck I don't see any option other than to have surgery. I have already fallen over once and am unsteady enough to have to use a walking stick. This problem only started in mid June and has progessed fast.

The marrow infiltration thing I will ask my haematologist about when I see him again next Thursday for the BMB results.

Vidaza still not working yet but there's still time (I hope)

Yesterdays results pre 4th cycle.

Hb 78
WCC 0.5
Neuts 0.1
Plats 90

Birgitta, I have been invited to a meeting of all my cousins next June in Stockholm. I would love to go and see some of them for the first time and have a reunion with those I have met before. I'm keeping my fingers crossed that my counts improve so that I can travel. One of my cousins and her partner might be visiting us from Orebro later this year. I have not seen her since 1976. I'm already getting excited.

Hope you all stay well.


Chirley

Chirley
Thu Aug 19, 2010, 08:36 PM
I just received a phone call from a radiologist at the hospital x ray department. He has discussed my results with the neuro and I need to go back and have another MRI tomorrow. This time they are going to use another method.

He kept telling me "don't worry". I wasn't worried until he kept repeating that. MRIs aren't my favorite thing, I have a tendancy to claustrophobia if I let myself dwell on it. I have to concentrate on my breathing and try and make my muscles relax, as one of Australias former Prime Ministers famously said in the middle of a recession "life wasn't meant to be easy".

Bye for now.

Chirley

Helen Robinson
Fri Aug 20, 2010, 12:44 AM
Hi Chirley

I have not visited this site for weeks as we have had our long awaited holiday. I am sorry to hear of your latest problems. Just for interest, David was diagnosed with ataxia type 1 in 2004 ( a year after diagnoses). They thought it may have been triggered by a drug he was taking for his PMR. I think it was an old malaria drug. He was treated with diamox which is used for glaucoma and it passed after several months. He had all the tests also.

I hope you can get some satisfaction from your specialists. We always ask for a copy of reports and keep then in a folder so each one can be up to date. Bring on the promised electronic medical management.

David had a Tx at Logan supportive care last week and we were impressed by the care given.

Best wishes

Helen

Chirley
Fri Aug 20, 2010, 01:44 AM
Hi Helen,

I'm pleased to hear the holiday went well. I've been to Logan a number of times when I was admitted for pneumonia and again when I first developed anaemia. They were very pleasant and professional. BUT, the parking was diabolical.

The last I heard, they are going to enlarge the car park by getting rid of the dirt and trees around the periphery. I think they would be better off building a small multi storey car park.

? talk to you next telephone forum?? Anthony is going to organise an MDS doctor for the next forum.

Bye for now.

Chirley

Birgitta-A
Fri Aug 20, 2010, 12:48 PM
Hi Chirley,
You know I had MRI on my liver and heart to control if I had iron deposits after all blood transfusion (the MRI was OK at that time). They told me that I should bring a CD with a story or music that I liked, so the time spent in the camera wouldn't seem so long.

Very nice if you can come to Stockholm :)! I am so afraid of infections that I only travel in my own car, don't use public WC and so on. It is good that I traveled a lot while I could - I have been in all parts of the world for example at a conference in Melbourn 1997 when they had winter. I liked that city very much.

Hope you will meet your cousin and her partner from Írebro during the fall!

Good that your platelets are so high! Surgery should be OK without platelet transfusions.
Kind regards
Birgitta-A