COMMUNICATION LOG

All information is provided in an impersonal form.
Patient:
I have been offered to start medication with the "Mavenclad" medicine from my hospital.
How will this influence the planned hsct-treatment in Moscow?
Doctor:
You should stop taking the medication 3 months before admission to the hospital
Patient:
Unfortunately I have to inform you that I have proven positive for E.Coli- ESBL-A( regarding a bladder infection).
I am now being treated with a broadspectrum antibiotic (Bactrim 400mg/80mg) for 10 days. The cure is almost over, still, I have the same symptoms.
My doctor tells me that it is not much to do if the antibiotics do not work, and that it might not be safe to take the treatment with this infection.
I would therfor appreciate feedback from your facility regarding what to do next.
Doctor:
This is not a problem, you can come as planned, just keep taking the antibiotics.
Patient:
A few years ago I got the antibiotic Moxifloxacin because of an infection. Unfortunately I reacted with difficulty in breathing after taking it. Since I have now seen that Ciprofloxacin is used during the treatment and it also comes from the drug class of Flouoquinolones, I am worried. My haematologist also told me that Flouoquinolones are no longer used in my country due to the strong side effects. And therefore it is not possible to be tested for an allergy. All in all I would like to do without the intake of Ciprofloxacin. Is it possible to get another antibiotic in your hospital?
Doctor:
it isn't a problem. We don't use antibiotics patient has allergy to. In your situation we can use Amoxiclav or Cefixime
Patient:
Hope you are keeping well. I am missing your care and all the team in Moscow.
In my MRI notes you mention that there are signs of osteochondrosis. I have a lot of pain in my lower back in the mornings for which I do stretches and I would like to know where the osteochondrosis is.
Is it possible for you to provide more detail as to where the osteochondrosis is?
Doctor:
Almost all people have more or less signs of Osteochondrosis.
We found mild signs in your spine.
If you have pain, try to use physiotherapy, massage, maybe short course od ibuprofen or analogous.
Patient:
Thank you for your reply and reassurance. All is going very well for me.
Patient:
I am curious if I would be able to get my blood work done in Moscow? The tests would include total count, biochemistry panel, IgM, IgG, and IgA as you have suggested in the past.
The reason I ask is that it will take at least two doctors appointments here to get these results.
Doctor:
We can provide all blood tests, no problems. It takes 1 day to be ready.
Patient:
Hello, my neurologist has diagnosed me with multiple sclerosis by means of electromagnetic resonance .. My situation is getting worse and worse. I want to see if I can meet with a doctor specialized in multiple sclerosis of your institution to receive diagnostic treatment and medication. I have a Russian visa already and understand that treatment in your facility is the best in the world. I don't know what type of MS I have but I have the MRI disc and doctors report.
Doctor:
You can come for an examination and, if there is evidence, we can proceed with HSCT
Patient:
My mother has since About 10 years healthy problems it started with losing powe in her Hands and then it gos on her legs first left than right she went to so manny doctors and therapies but they couldnt say nothing clar.
But since About 5 symptom based years they thought that she has MSA multy System atrophy that means a Damage in her Cerebellum (mini brain). She sits in a wheelchair since a few year because with the years her mobility gets more worser. Since the last visit in the Hospital they think that she has an cerebellar ataxia.
They only suspect but she gets every time worser .
So we heard good Things About the therapy that it can help a Little bit to get better mobility . So we would try it out and do this therapy my Question is now is there a possibility with that diagnosis from my mother to get better when she would make the therapy?
Doctor:
We use autologous stem cell transplantation for autoimmune diseases and hematological malignancies.
This treatment is based on high-dose chemotherapy to destroy tumor or aberrant immune system. We don't treat problems you asked about. Transplantation can't be used for these conditions. Regenerative stem cell technology are not proved in Russia
Sorry for not being able to help...

Patient:
I have had MS for 27 years and I am now Secondary Progressive. My EDSS is about 7. I am on Levothyroxine for an underactive thyroid, but am otherwise in good health. Would I be eligible for the procedure? Thank you.
Doctor:
We need more data to make a decision, please complete medical questionnaire: https://hsct-russia.com/application-for-treatment
Patient:
I've underwent HSCT in Singapore. I actually first applied for your treatment (and was accepted) but could get in quicker to Singapore, so decided to go there.
After 4 years, I've just learnt that I have two new lesions on my brain. I have no physical disability only sensory symptoms. I thought I was the best candidate to have HSCT young (25 at the time of transplant) fit, early in my disease and no disability. So I'm considering the possibility of undergoing the transplant for a second time and as your the only transplant doctor that I know of that collects data on repeat patients. I was hoping you could help me?
Have people found success having the treatment a second time? I guess I'm looking for confirmation that HSCT a second time is worth doing and any data that supports that? I'm just devastated and trying to figure out what to do next.
My HSCT doctor in Singapore suggested trying new drugs like Ocrelizumab and if that doesn't work then possibly a second transplant. But I just have no idea what to do. I know your extremely busy but I'd appreciate any help you could give me.
Doctor:
We can help and we recommend 2nd HSCT. We have developed and clinically approved a special protocol of second HSCT for such situation. Completing our questionnaire, please check the box in the field "2nd HSCT"
Patient:
I have been following a good mood, good food and good rehab protocol for 4 and a half years. I am a little better and stable, however my walking without assistance has not improved much for independence.
I had a recent visit with my neurologist. There were two concerns in which I wanted your advise and in-depth knowledge.
1) My 3mm spinal atrophy in the MRI has been preventing my walking and mobility. I wanted to know if there were any more new procedures/stem-cells/plasma that I could undergo for more mobility.
2) MS relapse after pregnancy. Since we are looking to start a family, and post-pregnancy there are higher chances of relapse. Could you please if there is any safety measures. that I should look at during the time period.
Doctor:
You do good job. Unfortunately, spine atrophy is a result of previous progression. Only rehabilitation can help. There are no medical treatments.
We support your wishes to start family. You should follow normal life in this period and don't think about risk. To be on the safe side, you should inform doctors and me about all changes in your condition during pregnancy. Also, IvIg G 1 g/kg b.w. every month, 3-4 months can be useful.
Patient:
Thank you for your response and time. I am currently researching on umbilical Mesenchymal stem cell for my repair and regeneration of the central nervous system. What is your opinion about it?
Doctor:
Idea is good. But we don't have enough data about effectiveness.
You can try
Patient:
Hope this finds you and your family and staff well. I just wanted to let you know that I saw my Neurologist today and he is totally amazed at my improvements! He was skeptical at first, but now he can see with his own two eyes that HSCT works! Six months ago when I saw him, he calculated my EDSS score as a 2.5 down from 4-4.5. But today he gives me a EDSS score of 2!!!!! I know you like keep track of peoples progress for your stats, so I wanted to let you know!
I was going to come to Moscow for the conference in November but I dont have the money to come just yet. I plan on coming to visit you and everyone in May or June 2020 and get my repeat MRI done then. But I did mention the conference to my Neurologist today and he said he would love to come if he could only get his wife to agree with it...LOL. He finds the conference very interesting and I hopes he can go and meet you and everyone else.
Doctor:
I am so happy! Thank you for information. We are looking forward meeting you.
I would be happy to meet your medical team in November
Patient:
I hope you are well, just a quick update the doctors here could not get my colitis under control with the Vedolizumab infusions as always needed steroids in addition around 20 mg to keep things under control ,they stopped the vedolizumab and started me on tofacitinib but after 7 weeks they noticed my lymphocyte count had dropped and after discontinuing for a week they tested again and dropped even lower .- I don't know if this is normal after transplant
They have exhausted all drugs now for my colitis and are suggesting surgery to remove my intestines
Doctor:
I am sorry that you have this problem. Actually, HSCT isn't a good option for colitis. It's good for MS. Low Lymph level is common after HSCT.
I would like to recommend you to discuss Infliximab + Methotrexate or Azathioprine treatment. I think, it will help Take care!

Patient:
Ocrevus has failed for me..dr wants to do Tysabri although in JC positive. I'm ready to do HSCT if approved, should i hold of on Tysabri?
Doctor:
You should't use Tysabri. It won't help after Ocrevus. Also, it's dangerous if you are JCV positive.
We are ready to help
Patient:
How are you..?? Thank you for my recent check up with you, im back home now safe and sound & had a lovely time in Russia.
Just a quick question, on my recent scan it said there was signs of osteochondrosis, can u tell me if this is in my left knee or spine & is there anything i can be doing or taking to help this.
Doctor:
I am happy that you are doing well. Almost all people have osteochondrosis (mainly spine)
I recommend only active life style (swimming)
Patient:
Hope you and the team are well. I have recently had a full set of blood tests undertaken buy by doctor now that I am passed 6 month post HSCT.

I have attached a copy of the recent results - 02 September 2019 and the previous Complete Blood Count (CBC) results from 17 May 19. I have also attached my blood results from 03 April.

My doctor is concerned with the drop in WBC, Neutrophils and Lymphocytes. I would appreciate your advice on this and whether or not I need some additional treatment as a result I.e G-CSF shots or something else. There is a measles outbreak in New Zealand at the moment so I am being extra cautious when out in public.

I look forward to hearing from you.
Doctor:
Sometimes it's possible. I recommend you to get 1 -3 shots of G-CSF and repeat test
Patient:
My cousin is paralyzed from the waist down to due fracture of his spinal cord.
He has used numerous antibiotics during these years for his urinary tract infections ( he used the catheter to empty his bladder and got infection after infection even though he used sterile gloves ).
Today he called me to tell me that none of the antibiotics he's been given work and now the new ones he is given is allergic to them that he had to rush back to hospital as his face was beginning to swell and his body was all itchy. For the past two months he is fighting bacteria Klebsiella and nothing works .
I must help him , here we have a superficial level of medical care.
Can you help him if he flies to Moscow right away ? I will pay for all expenses .
Doctor:
Transportation is dangerous for him. Discuss ivIg G, meropenem, Polymyxin B. This is what we use in case of resistant infection. Sorry
Patient:
My Haematologist has prescribed Trimethoprim/Sulfamethoxazole 160/800mg Mondays & Thursdays and also Valaciclovir 500mg daily for 6 months.
I have not had any infections or sickness, but he gives all of his post HSCT patient these medications as a precaution and wants me to be on them for 6 months.
I know I was on them while in Hospital in Russia, but is there anything I should be concerned about being on them for such a long time?
I am taking Vitamin B's, Magnesium, Biotin and was going to re-commenced Flaxseed supplements too at a later stage.
Doctor:
You can miss it and start in case of low Leuk level
Patient:
It is now 3 weeks I am back.
I am still very weak and most of the time bedridden because of fatigue and headaches. I understand it will take time...
I am worried because of vertigo which appeared first as positionnel vertigo when I lie down (only 2 mornings) and today vertigo even when I stand. I had vertigo for a very short period 10 years ago when I relapsed. Can it be the reactivation of an old symptom? Can it be chemio related? Can it be a relapse with so few lymphocytes (last blood work enclosed) ?
Doctor:
Blood test is good for this time. It's normal to have symptoms now as a result of strong HSCT and low Hb. It takes 3-6 months with slow recovery. You are MS free
Try to start rehabilitation slowly
Patient:
I had one more question maybe you can help me with or ask Dr F for me... does the intrathecal therapy increase risk of infertility and if so, how much?
And also, he said there were 3 drugs in the intrathecal therapy, Methotrexate, dexamethasone, and what was the last one?
Doctor:
Intrathecal therapy can't increase risk of infertility. It's local action, only in CNS
Medications - Methotrexate, Dexamethasone, Ara-C
Patient:
Do you perform hsct for Stiff Person Syndrome?
Doctor:
We do treat Stiff Person syndrome using HSCT.
We are ready to accept for treatment
Patient:
Thank you for the feedback.
I am so worried that I have Interstitial cystitis (painful bladder syndrome), as I have had symptoms of UTI in the last couple of months, but with negative bacteria infection several times. Cyclophosphamide is a strong chemo that affects negatively affect the bladder, and as I have read can make the symptoms much worse. This is a big concern of mine, and I would really appreciate feedback regarding this issue.
Doctor:
No worries about it. We use strong urine tract protection
Patient:
Do you have any testimonials from scleroderma patients that had it done?
Will he give me antiviral medications as a side effect is often herpes Zoster? Or does he advise on that ?
Could the Doctor translate my reports??
Do i have to stop cellcept close to the time? How close?
How often do u transplant scleroderma patients??
And ate u guys doing those right heart catheter check up like other hospitals in the pre check?
Doctor:
We give antivirus and prepare all recommendations.
We can translate, no problems.
Also we will provide careful examination including lung and heart functioning assessment
You should stop Cellsept 3 months before transplantation
we provide 2-3 HSCT
we provide ultrasound examination before catheter
Patient:
Should I stop Cellcept from 3 g daily to nothing ? I am afraid my immune systems will shoot back big time and my organs will be more damaged when I arrive ..
Doctor:
I recommend to decrease it gradually - 500 mg every 3 days
Patient:
I was wondering if some lesions have gotten smaller or disappeared?😃
Doctor:
MRI can't detect changong in size in old lesions.
The main idea, if we stopped MS - not to find news
Patient:
What is the success rate of the scleroderma patients u had and their improvements?
Why do the immunosuppressant have to be washed out months before? What would be the problem if they not totally out?
For instance cyclophosphamide ...
Doctor:
1 month is enough for Cellsept

Success rate - 70-75%
Patient:
I have Mitochondrial Myopathy, with extensive muscle loss, dyspnea, and dysphagia to a great degree, and peripheral neuropathy, with many other symptoms as well.
Please advise if any treatment is available thru you or anywhere else, and I can send you my medical history.
Doctor:
No sorry . it isn't autoimmune. HSCT can't be provided
Patient:
Can you please let me know if the facility in Russia treats Systemic amayloi for a friend of mine ??
Doctor:
We are not experienced in treatment of SA (amyloidosis)/ It isn't typical for Russia.
Try to find facility in Europe
Patient:
Thank you, is there any other institutions in Russia that can help me, I know of Dr. Skulachyov at Lomonosov Moscow State University has done research on the mitochondria, any assistance you can provide me would be appreciated.
Doctor:
Not in clinical practise. Only laboratory research
Patient:
I hope things with you and the hospital are well. I celebrated my second birthday at the end of August and I am always forever thankful
Things are really good!
I wanted to ask about pregnancy. And getting pregnant post-HSCT. Are there risks? Is there any complications with HSCT that can arise? What about the ms?
Doctor:
I am happy that you are doing well. We recommend pregnancy in 1.5-2 years after HSCT. Everything is as usually no additional risk
Patient:
Do you also have experience with the benefits of HCTS in relation to the UTHOFF phenomenon? My friend suffers greatly from temperature fluctuations, both externally and during ingestion. The sympthoms (spacicity, energy, power ....) are strengthened by heat.
Doctor:
Improvement of such symptoms is possible in 50-70% of patients
Patient:
I have recently been diagnosed with RRMS and am looking into HSCT.
I have very little disability at present <1. Would I still be a viable candidate?
Also what is the cost of HSCT at your clinic and are there any additional costs?
Doctor:
Yes, you can be a candidate
Early stage is the most favorable time for HSCT
Patient:
I am interested in HSCT, but i have a neuroligic Lyme borrelose in addition to multiple sclerosis.
Consequently, my question is whether it is possible to perform the HSCT with a neuroligic borrelose?
How is borrelose treated during HSCT?
How would you treat borrelose in general?
Doctor:
It's possible to provide HSCT if infection isn't active. We will provide all tests.
Patient:
I wanted to ask if you have any advice or knowledge of Treatments or Doctors for MSA (Multiple System Atrophy) ?
I have 3 patients in need of answers who are being treated poorly here and are desperate for help.
Anything you can suggest would be helpful.
Doctor:
No sorry . it isn't autoimmune.
This page is currently under construction and will be continuously developed...